That was Then, This is NOW!

My goal is still to support and encourage those who care for a loved one with Parkinson’s Disease or any other degenerative condition.

Reprinted from 11/17/2018

We have just begun our 20^th year with Parkinson’s Disease. It’s easy for me to think about how my husband was back then, compared to how he is now.

If I made a list of all the differences, you would grow weary of reading it because it would be long. Those memories bring intense sadness as I think of all the changes in him, both physically and mentally.

My life has also changed. And the list of “then” versus “now” is equally as long. Sometimes my mind really wants to stay in the past, but I realize how fruitless it is to dwell there too long. It is easy to become stuck in the past, but it can create a feeling of discontent and even loss.

Instead, I need to think about the here and now, and how I can lead a fulfilling life while caregiving. I’m not thinking about filling my life with activities, as much as I’m thinking about how to remain vital and alive personally.

Some say Parkinson’s is the BEST possible disease to have because it is slow-moving. We likely have time to accomplish many things in life, and we have time to finish what we’ve started.

Some say Parkinson’s is the WORST possible disease to have because it is slow, and it takes away the vitality of life, little by little.

I believe the truth is found somewhere in the middle. Here is what I mean.

Life is dynamic for all people, ever-changing. So, we need to live today as if it were our last day and do that every day. We are not promised a specific number of days of life on this earth, and not one of us knows the exact day of our death.

Instead of looking back and wishing we were young again, wishing we could do everything we used to be able to do, wishing we didn’t have Parkinson’s Disease, there is a better way.

That better way is to think of today as a gift and to greet everyone we meet as a valuable person who deserves a smile from us and a kind word.

That better way is to be thankful for today because that is the gift in available to us right now.

Yes, I look back and see how it used to be. Yes, I look ahead to the future and wonder if we will be able to do this and that. But the reality is that we have been given this moment, and I would like to use it to tell you this:

You are not alone as a caregiver. There are many of us around who would love to come alongside you on this journey and help you through it, whether virtually or literally. Don’t give up. Don’t despair. We are here to help.

Enjoy your gift of today. Thanks for reading and commenting.

Executive Functions

Today my heart is heavy as I mourn the passing of 2 dear friends, one who had Parkinson’s for many years, and the other who has struggled with many physical problems including chronic pain for many years. While they are with God and free from their previous physical limitations (Hallelujah), we already miss them with great sadness. Rest easy, Terry and Winnie.

Our topic for today is the loss of executive functioning which comes with Parkinson’s Disease. Before my husband was diagnosed with PD, I gave almost no thought to the implications of executive functions. But throughout the disease, I noticed a constant decline in the ability to do many routine tasks associated with this topic.

Executive functioning can be described as ” brain functions that activate, organize, integrate and manage other functions. It enables individuals to account for short- and long-term consequences of their actions and to plan for those results. It also allows individuals to make real-time evaluations of their actions and make necessary adjustments if those actions are not achieving the desired result.” https://chadd.org/about-adhd/executive-function-skills/

We notice right away that the definition refers to brain function, and we know that Parkinson’s is a degenerative brain condition. That tells us that executive functions will be affected as the disease progresses. So, how does this decline manifest itself?

The 11 common executive functioning skills are memory, flexibility, time management, response inhibition, emotional control, sustained attention, organization, planning, prioritizing, task initiation, and metacognition. As we read this list, we can think about our loved ones and the decline of these skills as they are used in everyday life. Here are 2 examples from personal experience.

My husband struggled with doing 2 things at once. He could walk down the hallway of our house, or he could hold something in his hand. But he could not do both at the same time. It wasn’t just a balance issue. It was more of a concentration issue. The same with walking and talking. He could walk, or he could talk, but he couldn’t do both. The same with listening. He could walk, but he could not listen to me at the same time. In the early stages of PD, as I was helping him get dressed in the morning, we could discuss the events of the day. But as the disease progressed, I noticed that while I was dressing him, he couldn’t speak. I had to stop moving, get his attention, and then discuss the events of the day. One thing at a time. Only one.

The other example comes from making decisions. At first, I would ask what he wanted for lunch, and he would tell me. Eventually, I noticed that when I asked that question, he couldn’t come up with an answer. He replied, “Whatever you have on hand.” That led me to give him a list of choices for lunch. Even then, he couldn’t decide. This was not an occasional thing. This happened many days in a row. After noticing the trend, I gave him only 2 choices. That was better for a while, but the day came when he couldn’t even choose between 2 things. When I noticed that becoming the norm, I just made the choice for him. Thankfully, I already knew the foods he liked, so he ate whatever I fixed without complaint.

In each case, we can see the progression. There is no standard amount of time between steps because every case is different. But as we notice the decline of executive functioning, we adjust our expectations and adapt to the specific situation. It does not benefit us to say, “Can’t you make up your mind?” They can’t. Parkinson’s has robbed them of that executive function. Instead, we take on those tasks for them. This is a normal progression for a degenerative disease.

As caregivers, it means that we are constantly changing our approach and our expectations. That can be exhausting, so we need each other. We need our families, our friends, and our faith. We cannot do this alone.

Thank you for reading and commenting. I am praying for you right now, that God will grant you wisdom, strength, and peace.

REGRETS? Oh, Yes!

All of us have regrets because we are human and imperfect. Looking back, it is normal for us to wish we had done things differently. These feelings, if left unchecked, can lead to depression and even despair. So, what do we do with regrets?

First, if applicable, we can apologize for our actions or inactions. We can ask the offended person for forgiveness, and then we should ask God for forgiveness. While we cannot control how the other person accepts our apology, we know that God promises to forgive and forget! We can also journal about our experience, which is sometimes cleansing. Another avenue to help with healing is to talk with a professional therapist or psychologist who is trained to offer ways to get past these negative feelings. The most important thing is to do SOMETHING to release these regrets.

Second, we can use our regrets to guide us in making positive changes in our attitudes or actions. Those negative memories can inspire us toward improvement with a view toward living with fewer regrets in the future.

We will never be totally free of regret, and we may have to revisit these steps repeatedly because we are human, after all! But the best thing to do with regrets is to “LET THEM GO!” We cannot go back and re-live those offending moments, but we can use those memories to spur us on to better lives.

As caregivers, many of us look back and wish we had done better. That’s normal! But again, we cannot go back. So, we let it go and vow to do better in the future. One final word for caregivers. When we do our best and we still feel some regret, maybe wishing we had done more or been more perfect, we must let go of those feelings because our best is all we can do. Again – our best is all we can do.

Period! End of REGRETS!

Thanks for reading and commenting, and God bless you today. I am praying for YOU!

SIX YEAR ANNIVERSARY!

It has been six years since I began this blog. And this is still true:

My goal is to encourage and support those who care for a loved one with Parkinson’s Disease or any other chronic or degenerative disease.

Even though I have no medical training, and even though I don’t have all the answers, I can still say this:

Thank you for reading (some of you for all 6 years!), thank you for commenting (even those who are my siblings), and I am praying for each of you right now. May God grant you wisdom and peace, and may God cause you to feel His presence with you right now.

BIG Things and LITTLE Things

There have been several times in my life when I have felt completely overwhelmed, and I wanted to shut down and run away. The first was in college toward the end of each semester. There were so many BIG assignments due and tests to prepare for, and there were just as many little details that I had to attend to. How could anyone remember it all?

Another time I felt this way was when Carlton reached the final stage of Parkinson’s Disease. The number of things I had to keep track of and watch for just to care for him was astounding! Some were little things, and some were super important. Overwhelmed, I felt like I couldn’t do it all.

There was getting him up in the morning, changing his clothes and cleaning him up in the bathroom, giving his first dose of medication, fixing his breakfast, feeding him, settling him in his chair with the remote for the television, a drink, and anything else he asked for. You know how it goes, right? Then cleaning up all of those things I just did: his bedding, clothing, dishes, etc. Notice that I didn’t even mention all of the medical things we have to deal with like blood pressure, diabetes, mobility issues, swallowing problems, etc.

Meanwhile, there is daily life at home like paying the bills, keeping the car running, renewing the tag, taking out the trash, fixing everything that breaks, and the list goes on.

I can hear you say, “There are only 24 hours in the day, and I cannot get to everything. How do I do it?”

The issue is not with the big things. We tend to do those first because they are HUGE! Medication and safety are the most important. Cleanliness is part of the safety factor, because ignoring cleanliness can lead to infection and illness. Those things are first priority.

But let’s spend a few minutes on the little things – the little details. No matter your circumstances, caregiver or not, there will always be little details in life, and two quotations came to my mind:

“The Devil is in the Details” means that when something goes wrong, it is probably a little detail that was overlooked that caused the negative result. I make lists to remember the little details that MUST be done. After that, I give myself permission to let insignificant things go if they don’t really matter. That makes me feel better about things I don’t have time for. But we daily make decisions about the priority of things. Again, health and safety are at the top.

“Little things mean a lot” is another quote I have heard often. In this case, there are little things we can do that make life sweeter, and they bring joy to us and to our loved ones. Here are a few I thought of: add a placemat under their dishes at a meal, bring some Spring flowers into your house for a pop of color, play some favorite music quietly in the background during mealtime, change out something they see every day like sofa pillows or photographs. These are little things that might boost our spirits as well as theirs.

No matter our situation, there will always be things of importance that must be done. After that, we have options, and choosing joy and positivity is always the right choice. These things might lift some symptoms of apathy or depression. Sometimes we forget that we can do this!

Spring is a great time to remember to be thankful for all that God has created, and to bring art and color back into our lives. These might be little things, but sometimes they are just the right things to make life brighter.

Thanks for reading and commenting. Have a great week ahead!

What To Do When . . .

Our loved one is combative, , ,

Or argumentative, , ,

Or asks the same question repeatedly, , ,

My goal is to encourage and support those who care for a loved one with Parkinson’s Disease or any other degenerative condition or disease. Caregiving can be lonely, confusing, frustrating, and overwhelming. I have felt all of these emotions at one time or another, and it is likely that you have as well.

Today’s topic is not pleasant, but it is realistic. It does happen, and if it hasn’t happened yet with your loved one, perhaps these tools will come to your mind if and when it does. None of these work every time, but they are different ways to respond when the situation arises. These come from my own experience as well as the article referenced at the bottom.

When your loved one becomes emotional, combative, argumentative, or asks the same question repeatedly, you might:

1. Respond to their emotions, rather than their words. Think about how they are feeling, and try to ease those fears, staying away from the topic if possible. Give a hug, squeeze their hand, and/or respond to how they might be feeling. “I’m sorry you’re so worried. I’ll take care of it for you.” “This can be a scary time, but we’ll get through it together.” “Don’t worry. This will all be over in a few minutes.”
2. Keep your answers brief. Don’t go into a long explanation, and just give them enough information to pacify them. If this is a repetitive question, you will likely have to answer it again in a little while, so, why waste your breath with a long explanation!
3. Distract them with another activity. This is something you might do with a young child, and sometimes it is all that is needed. Sometimes our loved ones become fixated on a problem, and all they need is a little change of scenery or a change of topic.
4. You might need to escape the situation for a few minutes. Maybe it’s time to go check the mail so you can take a little walk. You might even find refuge in the bathroom at times! A few minutes of reprieve can give you time to regain your balance so you don’t lose your cool.
5. Don’t insist on being right, especially about memories. Don’t argue with them about this. You probably won’t win! If they lie to the doctor, however, be sure to set the doctor straight somehow, either by phone, or email. Another alternative is to put your loved one in the car and go back into the doctor’s office to set the record straight by talking with the doctor or one of the staff members. They will understand. I did this once when I was hoping the doctor would recommend Hospice care for my husband. While we were in the examining room, I excused myself claiming to need the restroom. While out of the examining room, I told the nurse my concerns, and she immediately understood. She informed the doctor privately. Remember, there is always a way. We may have to get creative, but it is worth the effort to be sure the doctor knows exactly what is happening.

Even though these suggestions work sometimes, there are other times that we will become agitated and might lose our temper with our loved one. It is normal because we are human. The best course of action if that happens, is to ask for forgiveness and then forgive ourselves. Then let it go. It happens.

Life is not a neat little package that can be wrapped up with a pretty bow. Sometimes it is just messy, so we just do our best. You are doing your best in your situation. What else have you found that works for you in instances such as these? We would love to hear your suggestions.

Thanks for reading and commenting, and have a great final week of February! God bless you all.

article referenced: https://dailycaring.com/4-ways-to-respond-when-someone-with-alzheimers-keeps-repeating-questions/?utm_source=DailyCaring&utm_campaign=ec5a9c2f03-dc_email_2024-02-22&utm_medium=email&utm_term=0_57c250b62e-ec5a9c2f03-123486810

Who’s In Charge Here?

My goal is to encourage and support those who care for a loved one with Parkinson’s Disease or any other degenerative disease. Today’s scenario describes the relationship between the Caregiver and their Loved One, and we will refer to them in those terms.

The big picture for today’s discussion is this: no matter your personal relationship at the time of diagnosis, the end will be that the Loved One will be totally dependent on the Caregiver. Parkinson’s will take its toll on the body and mind of the Loved One in such a way that they will need total care provided by the Caregiver and others. At that time, the Caregiver will be making all the decisions for the two of them.

This is a gradual process as the Loved One becomes less able to perform executive functions and use sound reasoning to make decisions. This affects every area of life and can be described as a slow transfer of power and responsibilities. Here is a sample list of activities that illustrate this:

First – paying bills. At our house, it was Carlton who always took care of paying bills, but gradually I had to take this over. The first step was when he couldn’t write clearly to make out a check. Then he couldn’t remember how to use the bookkeeping computer software. It was a gradual process.

Second – driving. I had a clear advantage with this one. Carlton himself decided to give up driving. It happened when he nearly hit another car because he couldn’t turn the wheel fast enough to get out of its way. Other friends have had several accidents in a row before deciding to give up driving. When safety is a concern, Caregivers must step up and step in and make a firm decision. Not doing this could result in harm to someone and/or a lawsuit which would devastate the finances of the family. We must make the difficult decision with kindness and respect.

Third – answering the phone. Some of our Loved Ones will be happy to give this up, especially when it makes them anxious. When cognitive decline is detected, it will become difficult for them to make quick decisions to answer questions they hear in a phone conversation.

Fourth – solving problems of everyday life. If your Loved One used to be the one you called to kill a roach, to unclog the toilet, or even to tighten a screw in the wall, that will come to an end. Yes, we mourn that fact, but it is reality. That means we have to step up (or call on someone else). Our Loved One may think they can still solve all of our little problems, and they may want to get up and try, but the day will come when getting them up to try is more work than it’s worth, especially because they will not be able to complete the task. Gradually we will have to take over these fix-it chores, and many times we should not even bother our Loved Ones with the details. (Hubby always said I would miss him most every time I saw a roach!)

And finally – decisions about the future. As cognitive ability is declining, we who are Caregivers must make even major decisions without our Loved Ones. It is likely that our Loved One will not need to know some of these things, nor will they care, so it falls to the Caregiver to make the decisions that are best for the future.

We can be thankful that with cognitive decline and the inability to reason logically comes a loss of awareness of current affairs. Many times our Loved Ones become so consumed with themselves and with trying to stay alive, that they cannot think of other things. As my husband’s condition declined, he thought less and less about our finances, which made life easier for me.

The picture I have attempted to paint for you today is of a journey of two people, the Caregiver and the Loved One with Parkinson’s Disease. However they began, as equals or as the Loved One being the leader of the two, that is not how they will end up. In the end, the Caregiver will be the decision maker, and the Loved One will be totally dependent on them.

Think about where you are on this journey. My prayer is that you will not fight the inevitable, but that you will gradually and graciously flow into your position as leader and chief decision-maker in your home.

Thanks for reading and commenting. I am praying for each of you today.

Surprised by Parkinson’s

When my husband was diagnosed with Parkinson’s Disease, we knew very little about it. We had heard that it was the “shaking” disease, but he did not shake. That was the extent of our knowledge of the disease itself. But over the years we learned about the symptoms of the disease and the side effects of the medications most commonly prescribed. Many were common and expected. However, a few that totally surprised me. Here are the top 5:

First, a wide variety of parts of the body can be affected by PD. We asked the same question you likely ask every time a new symptom occurs, “Is this the result of Parkinson’s, or is it something else?” We didn’t always get an answer, but we got one answer in an unlikely way. When Carlton was in an advanced stage, we participated in a study created by The Michael J. Fox Foundation. It was an online questionnaire that arrived via email about every 4 months, and they asked some of the strangest questions. By reading those questions about things like dry mouth, double vision, constipation, apathy, and curled toes, we surmised that we were not the only PD patients experiencing those symptoms. And those are only a small percentage of the topics they covered. Who knew that Parkinson’s affected so many different parts of the body?

Second, not everyone has all the symptoms. This seems like a “given”, and perhaps it should be, but for those newly diagnosed, this is a good thing to remember. Many factors determine which symptoms your loved one will experience, including pre-existing conditions, body type, lifestyle, environment, level of activity, etc. Another thing to remember is that we cannot prevent many of these symptoms. When they occur, it is not because we are doing anything wrong. Again, they are the result of many factors, mostly unseen.

Third, many PD patients behave differently in front of their doctor than they do at home. This is frustrating to the caregiver because we realize the doctor does not have a clear vision of how they really are! I offer no explanation as to why they do this, except to say that it is common.

Fourth, even in the advanced stage, many PD patients talk about “getting up and fixing things,” knowing full well that not only can they not get up on their own, but they cannot wield a hammer or turn a screwdriver. Perhaps they used to, and they want to, but we know they cannot at this point. So, what do we do? Sometimes we can agree with them and say, “Yes, dear.” We also could just not reply. But sometimes they really mean they want US to get up and fix that thing. It is annoying at best!

And lastly, Parkinson’s patients can only think about one thing at a time. For us, this was true even in the early stages, and it showed up in various ways. Carlton could only carry one thing at a time, especially if that one thing was a drink. When he was still working, and he wanted to go to a meeting, he could only carry his notebook – his one thing. Eventually, he could only think about walking, so he couldn’t carry anything! In the advanced stage, this was especially obvious when I was dressing him. That was not the time to go over the schedule for the day or give him any new information. We were dressing. Period. When I said, “Lift your foot for me to put on this sock,” he could not also hear, “Today we’re going to the store.” They have singular focus, and sometimes hyper-focus! As caregivers, we do well to remember these little things. It will make our lives less stressful.

What other symptoms of side effects have you noticed that surprised you? I’m sure every condition or disease has its own set of surprises, and we are comforted in knowing that these are normal. I am thankful for a support group of fellow caregivers who understand. Talking about it really helps!

Thanks for reading and commenting, and I pray that you have a great week ahead.

It’s a Balancing Act!

Let’s make a list of all the responsibilities we balance as caregivers:

1. Our loved one who needs caregiving – daily care, medications, medical appointments, medical equipment
2. Other family members – parents, children, grandchildren, extended family
3. Our home – food, paying bills, repairs, utilities, items of comfort
4. Ourselves – our health, our comfort, our sanity, our career or hobbies
5. Our faith – prayer, meditation, reading, listening to sermons, and communing with others of like faith
6. Our friends – we need them now, and we will need them much more in the future

I have likely forgotten several things that should be added to that list. The combined list is overwhelming, isn’t it? And it has not escaped my notice that you and I are listed LAST on that list. It was not necessarily intentional, but it is significant, don’t you think?

We all understand that the list is too heavy for us to bear alone, and several things will fall through the cracks because of emergencies involving people up the chain! For me, some things were put aside because I actually forgot to attend to them. Even now that I am living alone, I need a reminder to stay in touch with family and friends, and I must be intentional to take good care of myself.

Maybe today is a good day to make a list of things from that list that we need to give attention to this next week. Life is a balancing act between duty and downtime, emergencies and entertainment, and maintenance and prevention. Let’s pick up those balls we have dropped lately and make notes to remind ourselves of balance in the future.

Thanks for reading, and have a great week ahead.

Let’s Get Practical

To encourage and support each other today, let’s get practical with suggestions to help around the house when faced with declining mobility. Here are my 3 quick hints today:

First, if there is a place in the house where our loved one stumbles or freezes often, use a fluorescent-colored tape to mark that spot. A few short pieces of tape might work, or we could try one long piece to mark a path. Try one placement of the tape, and if that doesn’t help, try something different. The tape might “shock” them into being more careful at that spot.

Second, throw rugs are a fall hazard, so it’s time to remove them. They look great and give color and interest to the floors of a house, but to someone having difficulty walking, they are dangerous. It would be wise to remove them sooner, rather than later. Safety is so important, and while we cannot prevent every fall, these are just a few things we can do to limit falls and make life easier for us and our loved ones.

And third, check out this website: www.maxiaids.com. This company sells many different products to make our lives easier. Our favorite product was Bump Dots, which are raised dots that you can stick onto a television remote, the “on” button on the microwave, or any other place you often need to find. We used the bright orange ones, and they were a huge help around the house. However, this company sells many other useful products.

Today we have left the theoretical and zeroed in on the practical, and I hope you found something useful. As always, thank you for reading and commenting. We would love to hear about products YOU are using around the house to make life easier for you and your loved one.

Have a great week ahead!

“J” is for JOURNALING

Yes, dear readers, my word for 2024 is Journaling. Please don’t stop reading yet. I want to introduce you to a new friend of mine who has created some beautiful journals. Mark Segal is a fellow writer who has designed several journals, and I have decided to try them out this year.

During the years that my husband, Carlton, had Parkinson’s Disease, I journaled occasionally. I discovered the value in documenting his condition when we were in the doctor’s office and the question was, “When did this symptom begin?” My journal became my record of his Parkinson’s journey, which was valuable to me and to the medical professionals who were caring for him.

I didn’t write every day. Perhaps I only wrote when there was a change. Here is a short example from what I called “Carlton’s Diary.”

4/23/2017 5:15 AM I heard Carlton get up to go to the bathroom. I never heard him come back to his bedroom, but I heard sounds in the kitchen. I got up and found him eating at the far counter. He confessed to me that he was having hallucinations and that the people told him to eat cookies. Then he admitted that he had been seeing these people for about a month – faceless figures – sometimes 30 or so of them, in our house. On this morning they had physically helped him get out of bed. He had touched them for the first time. They waited in the hallway when he was in the bathroom, then they went with him to the kitchen and suggested he eat cookies. (That was strange because he has been on a self-induced diet for the last week.)

My next significant entry was when we noticed he was fainting almost every time he stood up. His blood pressure plummeted upon standing, which caused him to faint. The result of documenting those beginning episodes was that I could explain to the doctor how long that had been happening and to what extent. That information was important in helping the doctor decide how to treat this new symptom.

Today I am encouraging you to journal about your loved one’s condition, but I am also suggesting that journaling is important for you, just as it is for me. A journal or diary is a place to write down our thoughts, our dreams, our questions, and everything else going through our brains! There are no rules, just lines! The way you want to write is the right way. Mark explains it well on this page of his website.

Here are some things to consider about journaling:

Journal about your loved one

1. Notate any changes in their condition on the day you first notice it/them
2. Document when you begin new medications
3. List changes to their diet such as when they cannot chew easily, when you switch to soft foods, when they begin choking on liquids or solids
4. Make special note of cognitive decline which includes how often they forget facts, forget what you have told them recently, or fail to recognize people and places.
5. Designate a page for questions for the next doctor visit

  Journal about yourself

1. Begin by documenting facts such as when your sleep is interrupted, how much sleep you’re getting, etc.
2. Eventually add in your emotions. Briefly notate how you are feeling about the changes you see in your loved one.
3. Put on paper all the questions you think about, whether or not you have answers, and whether or not you think you SHOULD be asking these questions.
4. Make a list of things you want to do “some day”. This is your Wish List.
5. Write for your children and grandchildren. One day they will want to know you better.

  There are no RULES!

1. No need to feel guilty if you don’t write every day.
2. Remove all expectations on how much you write.
3. No worries about who will read this.

  4. And no pressure. Just write!

I hope you’ll join me in 2024 in journaling. Let’s write about anything and everything, and as we write, let’s remember to be thankful for all that God has given us. As always, thank you for reading, and commenting. I pray God’s blessings on each of you in the New Year.

Hallucinations and Holidays

Recently I have heard several friends ask about how to handle the situation when their loved one has hallucinations, and I promised to address that today. Because this is December 23, we will end the post with a bit about the holidays.

As always, my disclaimer is that I am not a medical professional, so please follow your doctor’s orders in all things. However, my husband, Carlton, did have hallucinations, so I have some experience with the topic. This symptom or side effect of Parkinson’s disease also came up for discussion often in our support group, which is where I learned how to respond to him in this situation.

Often the hallucinations begin in a benign situation such as seeing a cute little dog where there really is no dog. Then our loved one might begin to see people, usually standing on the edges of the “picture”. These are usually not frightening, and they are easily dismissed by reasoning with them or with humor. With Carlton, I believed these were caused by diminishing eyesight and the presence of shadows or unclear vision. I could easily explain them away, and he usually capitulated by saying, “Oh, you’re right. There isn’t really a dog there.”

Those beginning visions did not bother me, and they seemed quite harmless. Alarm bells rang in my head, however, when the hallucinations became more frightening to him. From dogs and people, Carlton graduated to bugs and crawling things on the floor, on the walls, and anywhere there was a change in the color of the wall or surface, especially in the bathroom. He even saw water flowing down the wall and puddling on the floor. The worst hallucinations he had were men standing right outside the window, first with cameras taking our pictures, and then with machine guns. He was truly frightened by that time! (This progression was over several years.)

These are all common to Parkinson’s disease. By saying that, I do not mean that EVERY Parkinson’s patient will see visions, but many will. As caregivers, we should watch for it and not be surprised when it happens. There are a few medications that may help with hallucinations, so be sure to ask your doctor about them. However, they come with some serious side effects.

The next question on our minds is this: how do we respond? what do we do about them? There is no magic formula, but here are a few suggestions.

• Remembering that Parkinson’s is a degenerative brain disease, we know that their ability to reason will lessen as they get worse. So, while you might be able to get them to understand that these dogs they see are not really there (when they are beginning hallucinations), as the visions get worse, their ability to understand that they aren’t real will become less. Try adjusting the lighting in the room to eliminate the shadows. Sometimes that helps.
• When Carlton saw a piece of darkened grout beside the bathtub as a bug, and he wouldn’t be pacified by anything I said to explain that, our daughter got white paint and painted over it so he would think we had killed the bug (finally!). As caregivers, we do what we have to do to change their focus. This is similar to how we would treat a young child – distract and change their focus.
• Now to the scary visions Carlton saw at the end of his life. I chose to approach this from a religious and spiritual aspect. I told him these were really angels and that they were coming to sing to him. I played Christian music to him and sang to him, I quoted Bible verses to him and prayed with him, and that seemed to help. The CNA sent by the Hospice company at that time was also deeply spiritual, and he joined me in this, as did our daughter. That was very helpful.
• Another part of that was just being close to him. I told Carlton that we would not leave him, so there wouldn’t be anyone who could harm him. We stayed very close to him during that time, and that seemed to help.
• It is important to not become angry or impatient with our loved ones when they see things. These “things” are real to them, and sometimes when we tell them they are NOT real, they may become angry. When that happens, we must back up and realize that approach is not working. Sometimes humor works, but the same thing is true. If they become angry at our humor, we need to try another approach.
• Maybe the most important thing for us to remember is that their brain is playing tricks on them, and the more frequently that happens, the more we realize they are in cognitive decline. We can no longer reason with them as we used to. More on that another time.

If you have other questions about hallucinations, please reach out to me privately via email or text, and I will be happy to help. Again, there is no standard formula. We try one thing, and we celebrate when it works. But we also know that it might not help the next time.

In closing, were you wondering about My One Word for 2024? Each year I choose a word on which to focus during the next year. Tune in again next Saturday for my word for 2024. I have chosen it already! Here’s a hint – it begins with “J”.

Thank you for reading, thank you for commenting, and thank you for your encouragement. It is a pleasure to write and to speak to many of you in person often. During this next week, I will be praying for you and your loved one. God be with you!

Cognitive Decline, Dementia, and Alzheimer’s

Disclaimer: I am not a medical professional, nor do I claim to know more than any physician.

Purpose: My only goal is to support and encourage those who care for a loved one with a chronic or degenerative disease such as Parkinson’s Disease.

This past week I was impressed with an article concerning how we respond to our loved ones with cognitive decline, dementia, or Alzheimer’s Disease. The article is lengthy with some great nuggets that apply to us as caregivers. The title is “5 Things to Know for Better Healthcare in Dementia”, and here are a few thoughts I have after reading it.

First, with cognitive decline, new physical problems can amplify and accelerate it. Things like constipation, having a UTI, any type of infection, or a new side effect from a medication, can cause an increase in confusion. That means that as we see new physical symptoms in our loved ones, we may also notice an increase in forgetfulness, hallucinations, or delirium. Another trigger for this decline would be a trip to the emergency room for any problem and/or a hospital stay. As I have mentioned before, hospitals and anesthesia are to be avoided whenever possible for someone with cognitive decline.

Second, besides the neurologist who diagnosed Parkinson’s Disease, most of our loved ones have other types of doctors and/or specialists. Once we identify cognitive decline or dementia or Alzheimer’s in our loved one, all other physicians must have a record of this diagnosis. Knowing this information will give the doctor a complete understanding of our loved one’s total condition as they evaluate the current treatment and prescribe a new medication. Keeping them in the dark about this diagnosis is similar to tying their hands, and it could even be harmful to our loved ones in the long run. We can accomplish this through a simple phone call, email, portal message, or a physical document sent by snail mail.

Third, if we see even the slightest amount of cognitive decline, it is time for 2 unrelated, but specific things. And in my opinion, these are non-negotiable, even to the point of fabricating reasons for doing this if we must. Here they are:

• It is no longer safe for our loved ones to attend doctor’s appointments alone. They will not be able to give the complete picture of a situation to the doctor, nor will they be able to remember everything the doctor tells them about their condition, even if it is just a toenail fungus!
• Also, it is time to plan for the future. This may seem to be “too early”, but how long should we wait? Let’s not wait until the cognitive decline is so pronounced that they cannot even think straight. Now is the time to talk about whether they want to be buried or cremated, funeral or memorial service, church or funeral home, and all those other little details that they might want to talk about. Now is the time.

Fourth, the article doesn’t specifically talk about hallucinations, but I know that many of us deal with that specific problem daily. I’d like to talk about that in next week’s post, complete with quotes from several of you who are experiencing that right now. Stay tuned!

Thank you for reading and for commenting. Have a great week ahead.

Reach Out and Touch

Since day one of this blog, my goal has been to support and encourage those who care for a loved one with Parkinson’s Disease or some other chronic or degenerative disease. My prayer is that I will somehow accomplish that each time I write.

What do you need right now? Some advice? Encouragement? An opportunity to vent without judgment? Some days we need one of those things, and some days another. And yes, there are those instances when our lives change so quickly that we need all 3 in one day. It is a blessing to have friends and family we can call when we need to vent, to be encouraged, or to just feel loved.

However, it is the caregiving community that is best at giving advice and sharing things that have worked for our loved ones. For that reason, specific support groups are invaluable, and my prayer is that each of you can find one that fits your situation. If you cannot find an organized group, perhaps you can form your own, even if you must start small.

My husband entered the final phase of his life during COVID, when our activities were limited. But due to modern technology, we had Zoom and texting and email and even phone calls to stay connected with those in our support system. We needed human contact more than ever before. And when your loved one enters that final phase, you will need advice, encouragement, and even to vent often.

We also need a break from caregiving from time to time. Let’s remind each other that time away from caregiving refreshes us and renews our energy to help us stay the course. We do not know how long we will be caring for our loved one, so we must care for our own physical and mental health for the marathon that caregiving can be.

But I am learning, now that I am living alone, that I still need to reach out. I still need a support system in place for times when I need advice, encouragement, and just to vent. Perhaps these human needs are with us all our lives, but are more acute in different seasons of life. So, in whatever season you find yourself, know that you do not need to “do life” alone. Keep connected to friends and family so that you will not feel alone. We all need each other, no matter our circumstances.

Getting back to the 3 things you might need today:

• if you need to vent, feel free to email me. I would be happy to be your sounding board.
• if you need encouragement, feel free to email me. I promise to be your cheerleader.
• if you need advice, feel free to email me. I will share with you what I know.

God put us on this earth to help each other, so please reach out to me, to another friend, or to a family member whenever you need to. We were not meant to travel this way alone. It helps to know there are others who have had similar experiences and have lived to tell about it!

Have a great week and thanks for reading. I look forward to hearing from you!

ALL IN ONE WEEK

Each week I change the background of my computer screen, and the quote for this week is here:

Some days melt into weeks when it seems like nothing has changed. During those times the difference in the physical or cognitive condition of our loved one may not have changed appreciably. That happens with degenerative diseases. But then, seemingly all at once, we might recognize tiny shifts in their ability to move or speak or hold onto a conversation. When we sense those, it is good to make a habit of writing them in our medical journal. We might need to recall when we first noticed them.

Thinking back over this past week, what symptoms are worse today? Perhaps this is a good time to jot those down. If something is becoming more difficult, it is worth recording. Time can get away from us as we grow weary with caregiving, so we cannot trust our memories.

Maybe we can also recall the high points of this past week. What things occurred that brought joy to our loved ones and/or ourselves? Did we experience a “God Wink” that seemed to be God reaching down to connect with us? Was it a smile or a simple “thank you” that warmed our hearts?

It is easy to get caught up in the negative parts of the real world and the difficulties of caregiving, but God does send us glimpses of His love and His character. We just have to be watching! I am thankful for each of you, and I pray God’s blessing on you today.

I had occasion to share my book with someone this past week, and I hope it gives them hope in their circumstance. If you hear of someone with Parkinson’s Disease, please point them to my website or to find my book on Amazon or Barnes & Noble.

Thanks for reading, and have a great week ahead!

http://www.hopeforparkinsons.net

Thanksgiving 2023

I am learning that when life becomes difficult, when I feel alone or sad, when I grieve the loss of anything or anyone, the best way to dispel those negative feelings is to rehearse the million things for which I am thankful.

There may not be room for me to list them all here, but today I will share a few.

• Life in general – I can enjoy nature, people and the beauty around me.
• Freedom – I can choose what to do with my time.
• Fall – the leaves are beautiful and full of color like art!
• Memories – while they sometimes bring tears, I try to turn toward the ones that bring joy.
• Family and friends – they are invaluable.
• Hope- in the midst of change, I hope I can make a positive difference in someone’s life.

Even though life might be challenging when we are caregivers, or when limited to one arm due to a broken elbow, we can still be grateful for God’s blessings every day. My challenge to you is to take a moment to list a few of the things you are thankful for right now, and give God thanks for them.

I am thankful for you, and I would love to hear something for which you are thankful today. Have a great week ahead, and I am praying for each of you.

When There Are No Words

My dear friend, Clarence, is with his sweet wife in her last hours on this earth. The distance between us keeps me from being with them in person, and I am not sure I would find words to say if I was there.

Another friend and loyal reader of this blog, Paul, is preparing to move his dear wife to a facility where they can take special care of her. That will happen in a few days, and again, distance prevents me from being there for you, Paul. You are an amazing caregiver, and this illustrates that fact.

May the God of peace who quiets the storms, give you ( Clarence and Paul and all others who need it) inner peace and calm during these difficult times.

Parkinson’s + Hospitals = PROBLEMS!

Before jumping into our topic for today, there are 2 things to remember:

First, I am not a medical professional, and I have no training in that area. I speak purely from experience and research.

Second, my goal is to support and encourage caregivers, not to lecture or frighten.

Many people have discovered that their loved one’s mental and physical conditions significantly decline with each hospital experience, even just a visit to the emergency room. This seems to be true for those with any neurological disease or condition. If we remember that these are degenerative brain diseases or conditions, some of the causes are understandable.

This is especially true for those in the advanced stages and/or those who are already showing diminishing cognition. We experienced this twice in the final third of Carlton’s life, and you can read the particulars about each event in my book. Check out my website for more information.

Let’s examine some reasons for this problem. First, if your loved one is a fall risk, the hospital staff cannot take a chance on them falling while in their care, so they may put an alarm on the bed. That absolutely terrified my husband when it went off, which caused him to fall, and since he was trying to get to the bathroom, that caused a mess! At home, when he needed to get up, I could be right there. But the hospital staff could not drop what they were doing to come help him whenever he needed them.

That meant that I had to also stay in the hospital with him to turn off the alarm and help him each time nature called.

There was also a problem with the staff understanding his soft speech and his understanding of those staff members who had speech patterns or accents he was not used to hearing. This was very frustrating to him, and he felt as if they thought he was unable to speak or communicate. In his mind, he was being marginalized and dismissed.

The last reason for confusion and difficulty was with medication. For those with experience with PD, we understand that our PD drugs are taken on a strict time schedule for maximum effectiveness, starting with our first one of the day. Most other meds are taken at certain times of day, such as morning, noon, or bedtime. But that is NOT true of Parkinson’s. Ours are timed by hours. The leading PD drug, Carbidopa/Levodopa (C/L) is taken every 3 hours or every 5 hours for maximum effectiveness. But hospital staff in general cannot or will not do that. That means our loved one is totally off schedule which leads to confusion, immobility, and frustration.

The last time Carlton was in the hospital I kept some C/L in my purse and gave it to him when it was the correct time. I believe that helped because it was one thing that had not changed.

These reasons I have stated help us understand how our loved one can become frustrated in the hospital. But there is one more reason. The unfamiliarity of the hospital seems to become amplified by the hour. They don’t know where their “stuff” is, they don’t know who these strange people are, and they don’t understand why they are there. We must remember that if there is already declining cognition, everything is new and unusual to them. Also, we know what happens when our loved ones get agitated. They begin to shake more, they panic, and they can become unreasonable. This uses up the already reduced dopamine in their brain quickly, leaving them sometimes in hysteria.

Some of this may dissipate when you take them home, but do not be surprised if they never get back to the place they were mentally, no matter how long the hospital stay.

For these reasons, it would be wise to use a hospital only if absolutely necessary for PD patients, especially those showing cognitive decline. When you do use a hospital, I suggest that a family member or friend be with the patient 24/7.

I pray for each of you, that God will give you wisdom as you make daily decisions concerning the care of your loved ones. Thank you for reading and commenting. Have a great week ahead.

When the Shoe is on the Other Foot

Or

When the teacher becomes the student, or

When the doctor becomes the patient.

These situations force us to see life from a different perspective. Life from the other side.

After all my years as a caregiver, today I find myself as one who is helpless in many ways, and it is an uncomfortable position. Almost 2 weeks ago I fell and broke my elbow, as well as scraping up several other parts of my body. Now I am in a cast and in pain, and in many instances, I must ask for help. Typing is tedious with one working hand, and life in general is just more difficult.

If you have read this blog for several years, you will recall that I have a dear friend who gave me this sage advice while caring for Carlton, “Think of how he must feel. He is trapped in a body that is limiting his movements, and he did not ask for any of this.” Now I am getting a taste of what he meant.

I am quickly learning to be thankful for what I can do, to be thankful for friends and family who are helping me, and to not take anything for granted.

Thank you for reading, and I hope you are thankful today as well.

Step by Step

An updated Re-Post

One of the first symptoms of Parkinson’s Disease might be a change in the way our loved one walks. Their steps might become shorter, they may lean forward more noticeably, they might fall more often, and it might look as if they are shuffling their feet as they walk.

“Shuffling” is the word used to describe when a person doesn’t pick up their feet between steps. As a caregiver, our immediate reaction is to say, “Pick up your feet!” Our loved ones might do that for a step or two, but then they will go back to shuffling. It is difficult for them to do 2 things at once – thinking about walking AND picking up their feet. Aside from being annoying, this does lead to falls, which we all want to avoid!

One of our physical therapists instructed my husband to pretend he was stepping over a log. That did seem to help for a while.

Another suggested counting and/or singing as he walked. We tried that several different ways. When HE tried to sing or count, it didn’t last long because he couldn’t do that and walk at the same time. At times I would count or sing, and that worked for short bursts of time, but soon he didn’t hear me. He was concentrating on walking. It is true that people with Parkinson’s can only do one thing at a time.

I would suggest trying these, as they are valuable tools, but don’t expect them to work flawlessly or consistently. They are just aids, not really solutions to the problem.

When visiting his doctor, the neurologist always took my husband out into the hall, asked him to walk up to the end and back, and watched his gait and body movement. Usually, once he stepped into the hallway and saw a straight path with no obstacles, he walked perfectly. He admitted to me later that he followed a line on the floor made by the carpet or tile. That was frustrating to me because I never felt that the doctor saw him as he really was.

The problem is that life isn’t made up of only long straight hallways. At home, his pathway was broken up by doorways and turns and short hallways, and he got stuck sometimes on his way to another room. That is often referred to as “freezing.”

To solve this freezing problem and help him navigate at home, we tried using colored tape on the floor in 2 different ways. At first, we used one long piece of tape that followed the hallway down the middle. That worked for a while. The second way we tried was to take short pieces like railroad ties spaced out like steps down the hallway. Each one worked temporarily.

SAMSUNG CSC

SAMSUNG CSC

These problems with walking do cause some difficulty in public. We have had people hold a door open for us, only to have my husband freeze 3 feet from the door. I imagine the door holder thinking, “What is the problem here? Why doesn’t this guy come on! I’m going to be late for my next meeting just from holding this door open for him.” This issue seemed to cause much frustration for all of us, and the more frustrated my husband became, the less likely he was to start walking any time soon!

For that reason, we opted for the wheelchair in many public situations, especially when there might be more walking involved than usual. (Walking in our home takes much fewer steps than walking in a large store.) The use of the wheelchair seemed to eliminate both the distance and the freezing, and that made everyone more at ease.

Sadly, public venues are not always as handicap-friendly as they should be. That is another frustrating topic. Wherever we are on this Parkinson’s journey, we must consider the access to any new location we plan to visit.

Do you have any strategy that works for walking or for getting past freezing in place? What have you tried?

Thanks for reading, and we welcome your comments.

The Other Shoe

My mission is to encourage and support those who care for a loved one with Parkinson’s Disease, or any other chronic or degenerative disease. I pray that today’s post will accomplish that in a small way.

The symptoms associated with Parksinon’s Disease are varied and are many. They appear in random order, which can be confusing to the casual observer. For us, there were 2-3 bothersome issues that drove us to seek a diagnosis from the doctor. None of these were “fixable”, so life became tolerable. And just when we felt comfortable with those conditions, suddenly a new symptom appeared. The other shoe dropped.

If we could not rid ourselves of that symptom, we just had to adapt to it. Again life settled in and became comfortable until a new situation occurred. This new symptom required a trip to a doctor or 2 to find a solution, which may or may not have worked. Life settled down again until _ _ _ _ _

Rinse and repeat. The other shoe dropped again. Does this sound familiar? This is the story of PD as well as other degenerative diseases. It can be an exhausting way to live! The list of annoying symptoms that PD patients can exhibit is long, but it is worth listing a few here. How many have you noticed at your house?

• Shuffling feet, leaning to one side, falling, freezing
• Sleeping too much or too little
• Difficulty swallowing (pills or drink or food)
• Softer voice
• Sensitive to smells and/or taste (maybe metallic)
• Double vision
• Constipation/Diarrhea
• Anxiety
• Either high or low blood pressure
• Small or unreadable handwriting

The good thing is that not all PD patients have all of these symptoms. And don’t panic! They do not appear all at the same time. They will appear slowly at first, and we can be thankful for that. But this is PD, and it is degenerative. There will be good moments and difficult moments, but we do adapt and settle in with each new problem.

You might ask, “How do I cope with all of this?” You are already doing many things to help. By reading this blog and doing research, you are educating yourself to know what to expect. Seek help from a local support group if there is one available. It helps to know you are not alone as a caregiver. Also, seek the advice of your doctor as often as possible.

It is most important to lean in toward your family, your friends, and your faith during this journey. They will be with you in the critical hours, and they will give you the courage to be ready for the next shoe to drop – the next symptom to appear.

It is an honor to be able to correspond with many of you by messenger, email, and phone during this time. Please don’t hesitate to reach out if you need to vent or ask questions. I pray God’s blessing over each of you right now, and I pray for these 2 things for YOU, just as I always prayed for myself while I was caring for Carlton. May God give you strength to care for your loved ones, and may He give you wisdom to know exactly HOW to care for them.

Thank you for reading and commenting. Please email me at cherylcaregiver71@gmail.com.

PRIORITIES

I have noticed that in whatever season of life I find myself, I am struck with this truth: I must choose my priorities for myself for today, for this moment. And you must do the same, whether consciously or unconsciously. Whatever we decide to do IS that priority.

When we are young, those decisions are made for us by parents and school. As we enter adulthood, those choices become ours. We take ownership for deciding what we will do, where we will go, etc. And in taking ownership we are accepting responsibility for our actions and for the result of our behaviors.

As caregivers, we sometimes feel as if those decisions are out of our hands once again. We are called upon to be ready to serve our loved ones per their needs and demands. And we do that, whether willingly or begrudgingly. (Sometimes a little of each!)

We have often talked about the need for time for ourselves as caregivers, and we all know the importance of those little moments or brief hours when we can care for ourselves. But that is not our focus today.

Instead, I am thinking today about who I am. What things are most important to me? What am I passionate about? Some ask the question, “What do I want people to remember about me when I’m gone?” In order to answer those questions, I looked for a document I wrote many years ago as an exercise dictated by the school at which I taught.

We were to write a mission statement consisting of 3 things we wanted to include in our lives. These were to be attitudes we wanted to portray or characteristics we wanted to emulate during our entire lives, not just for one year. Even though I wrote this document 30+ years ago, it is refreshing to go back to it now. I realize 2 things: I have not arrived at perfection in any of these areas, and I don’t expect to in this lifetime, and I still hold these characteristics as being worthy ideals.

What are your priorities today? What characteristics do you strive to emulate? What do you hope comes across to others so that they can see who you really are? The answers to these questions will be 3-5 goals that will guide us for the rest of our lives as we make increasingly difficult decisions.

In my last post, I wrote about Family, Friends, and Faith. These 3 things have greatly influenced my mission statement which is my list of goals for my life. My 3 points stem mainly from my faith because it guides me in every area of my life. I hope that is also true for you. If you want to know more about this, feel free to email me and ask.

As I hit “publish” this morning, I am praying for each of you, that God will be very real to you right now, and that your faith will increase. Thank you for reading and commenting. I truly appreciate each of you.

Three Little Things in September

These three little things are for everyone, including caregivers. Perhaps I am speaking to myself today, just allowing you access to my thoughts. Here we go!

#1 Touch is really important to some people. I notice that when I am shopping for clothes, how the fabric feels to me is equally as important as how it looks. I shop with my hands as much as my eyes. As my husband advanced with Parkinson’s Disease, he grew increasingly sensitive to touch. He wanted to pet the cat more often. He had a favorite blanket that was especially soft, and he complained when I put sheets on his bed that had a low thread count and were quite rough to the touch. Softness and comfort became more important as the disease progressed. Do any of you find that to be true with your loved one?

#2 Sleep is a common topic among caregivers, and many ask me about Carlton and whether he slept more at the end of his life. How about this question – should I wake him/her during the day so they will sleep better at night? Or this one – is it common for a Parkinson’s person to sleep most of the day? In our experience, sleeping went in stages. There were times when hubby would sleep most of the day and most of the night, so I just left him alone. There were other times that seemed more normal when he slept only at night. And then there were times when he had to take something like Melatonin or even stronger meds to help him sleep. But I just left him alone and let him sleep when he could because I read that the body creates more dopamine while sleeping, and Parkinson’s is a disease where the body loses dopamine. His need for sleep varied throughout the years, so, I figured that if he slept, he must need it!

Man sleeping in a recliner.

#3 My last thoughts for today are about emotions. We all have them, and it is important that we recognize these emotions when they occur. From anger to joy to sadness to elation, and everything in between, it is normal to feel them all. I could write a book about this, but today I just want to express that while caregiving I felt a wide range of emotions, sometimes all in a 24-hour period. Sometimes I had to suppress them out of deference to my husband, and that might not have been healthy for me. Sometimes I felt guilty for having a particular emotion, but now I know that is misplaced guilt. So, today I give myself permission to cry if I want, to laugh when I want, to be angry if I feel anger, and to love deeply. I hope you can do that for yourself as well as your loved one who likely feels emotions also.

My final thoughts today concern the 3 F’s in my life: friends, family, and faith. I am increasingly thankful to you, my friends, for your love and encouragement every day. I am thankful to my family who are always ready to help and show their love for me. And I am thankful for my faith in God that keeps me grounded and gives me purpose in life. At the end of the day, those 3 things have seen me through the darkest days. I hope you can say the same.

God bless you this week. Thank you for reading and commenting.

Is He/She Getting Better?

Today I have chosen to write about a difficult topic that might seem depressing at first glance, but I have actually found it to be freeing.

My goal, as always, is to encourage and support those who care for a loved one with Parkinson’s Disease or any other chronic or degenerative disease.

From that statement, we realize that until a cure is found, our loved ones will have this disease or condition until they pass from this life into the next. So, to be perfectly blunt, their disease is incurable. And even as I type that, I pray for a cure for Parkinson’s and the myriad other conditions that we know to be currently incurable.

Knowing they will not be cured is like taking a view from 32,000 feet where we forget about the day-to-day symptoms and inconveniences of each disease, and just focus on the big picture. That is good for us to do once in a while because the minutia of daily living can sometimes cause us to be bogged down in the mud! In all fairness, that is where we live, so we cannot totally overlook these problems. But for a moment, let’s look at the big picture.

There comes a time in caregiving when we reach a tipping point when the decline seems to be accelerating, and we realize that we are no longer maintaining a previously desirable quality of life. With us, it was about 8 months into Carlton’s hospice care. One day the nurse said to me privately, “We are to the point where one more Coke is not going to make any difference. Let him have it! If it makes him happy, that is a good thing. At this stage, it is not going to shorten his life.”

To me, that was our tipping point. I realized that he was not going to get any better and that little things like a coke or an extra piece of cake were not going to shorten or prolong his life. After that, my focus was on doing little things that enhanced his quality of daily life, not his quantity of years or days.

I will admit that the shift in focus was difficult for me. In some ways, I felt like a failure as a caregiver. I had worked so hard for many years to keep him going, but I could not help him get better. He was getting worse. That seems like a strange thing to say because we all know that degenerative means they will get worse. But somehow in my mind, I felt like admitting he was getting worse was equivalent to failure on my part. I had to get past that to be able to make his final days on earth the best I could.

Wherever we are on this journey, just remember that while we cannot make our loved ones WELL, we can give them the best quality of life possible each day. That will keep changing because their physical and mental condition will keep changing, so we have to be flexible and adapt. When we get to the tipping point on our journey, we want to know that we have done our best.

Thank you for reading today. This is a topic that is also covered in my book. If you haven’t ordered a copy, it is available through Amazon and Barnes & Noble, and also on my website. https://www.hopeforparkinsons.net/

I Think You’re Brave

I think you’re brave because you get up in the morning even if your soul is weary and your bones ache for rest.

I think you’re brave because you keep on living even if you don’t know how to anymore.

I think you’re brave because you push away the waves rolling in every day, and you decide to fight.

I know there are days when you feel like giving up, but I know you’re brave because you never do!

• Lana Rafaela   (adapted)

Falling and Fear

As caregivers, we do everything we can to prevent our loved ones from falling. We remove excess clutter from our homes. We pick up those cute little throw rugs that could cause them to trip. We put handrails in the bathrooms. And we remind them to use their cane or walker each time they get up. Those things are drilled into us when our loved one is first diagnosed with Parkinson’s Disease or some other condition that might limit their mobility.

After all – their mobility is extremely important to ensure their independence. RIGHT? We know how to do this!

However

Parkinson’s patients have been known to fall while standing still! Yes, you read that correctly. Sometimes they get off balance and just fall. While that may be inconceivable to us, it does happen, and as PD progresses, it may happen more often. Recently I read an article about falling that was published on the website of a nursing home. It contained several valuable suggestions, but it was incorrect in saying that all falls can be prevented.

Each time our loved one falls, they become more worried that they will fall again. And that is understandable. No one wants to fall because we know that the next fall might cause a broken bone or a hospital stay, and that is not preferable.

We do need to have a plan for how to help our loved ones get up after a fall because they are inevitable with Parkinson’s. So, here are some suggestions:

First, you need a gait belt. At first glance, it looks simple, and it is, but it is also extremely helpful to help someone up off the floor. Check out the video to get instructions for putting the belt on your loved one.

Second, don’t be afraid to call for help if you cannot get your loved one up off the floor. The fire department in your area is prepared for a “Lift and Assist” type of call that is not an emergency. As you call, just declare that this is not an emergency and that you are calling for “Lift and Assist” because your loved one has fallen. When I called, they told me it would take about 20 minutes to arrive, so I just kept my husband comfortable while checking the driveway often. The 4 firemen who came into the house were very kind and gentle, and they stayed a few minutes to be sure my husband was okay at the end.

Third, if your loved one has become fearful of falling, there are some good videos that show how to get up, and you might watch them together. Afterward, you can practice helping them up. That might take away some of the fear.

One last thought about falling. While we were under hospice care, they were very concerned about falls because they expressed to me something I also found in the article above. As we age, our bones become more brittle, and if we break a bone as seniors, the recovery time is much longer and more painful than when we were young. So, let’s do all we can to prevent falls while keeping our loved ones as active as possible for as long as possible.

Thank you for reading and have a great week ahead!

Are All Parkinson’s Patients Narcissists?

That question was sent to me this past week, and it caused me to do some serious thinking. Because we are caregivers of many different illnesses and conditions, let’s change the question to read like this:

Will every patient I am a caregiver to, be a “narcissist”?

To be sure I knew the textbook definition, I looked online. Here is the first one I found:

a person who has an excessive interest in or admiration of themselves. “narcissists think the world revolves around them”

– Oxford Dictionary

If we remove the word “admiration”, the remainder of the definition probably fits most patients of any illness or condition. They do have an excessive interest in themselves, in their condition, and in their care. And they do act as if the world revolves around them. However, that is understandable when you consider the situation. Both caregiver and patient are doing everything in their power to maintain a normal existence, even while having this condition.

Our loved one may act as if they are the most important person in the house because an incurable diagnosis can consume our thoughts night and day. Before long we begin to be hyper-aware of everything pertaining to that disease. This is normal, but it may become an obsession.

Having only a casual knowledge of the definition of narcissism, we might put that label on our loved one as the disease progresses and more symptoms become evident. Their condition stays at the forefront of our mind, and that is natural. However, as caregivers, we walk a fine line between being vigilant in looking for solutions to problematic symptoms and being casual enough about the disease to encourage our loved one to live life to the fullest.

But is this true narcissism? After finding the definition, I dug a little deeper into the actual components of “Narcissistic Personality Disorder.” According to the Cleveland Clinic, “Narcissistic personality disorder is a mental health condition. It affects a person’s sense of self-esteem, identity, and how they treat themselves and others. It’s more than arrogance or selfishness. In the worst cases, people with NPD may struggle with feelings of failure or rejection, putting their own health and well-being at risk.”

Notice the first sentence about this being a mental health condition. Since we are dealing with loved ones who may have cognitive issues, the loss of brain function might be a connection between the behavior of our loved one and narcissism.

The end of the second sentence is also important. Our loved one may treat us as unimportant because they are self-absorbed. (My husband used to panic when I got a cold or didn’t feel well.) They become obsessed with our health, realizing that they need US to be healthy to take care of THEM! They may even strike out at us verbally in a negative way. In my opinion, some of that comes from their true personality, while some of it comes from fear, knowing that they are ill and only getting worse. They know they cannot take care of themselves.

So, how did I answer the original question? I said, “When you are ill with a degenerative disease like Parkinson’s, you know you are only going to get worse. You think about that day and night, and you become hyper-aware of everything you feel. When you feel a new symptom, you might panic. You might obsess with wondering how it is going to be at the end. But in all of this, you think about yourself, and you cease to be concerned about your loved one – your caregiver. That is part of the definition of narcissism, but by itself, it is not true “Narcissistic Personality Disorder.”

What can we do about this as caregivers? First, understand it and accept it. Second, guard our hearts against hurtful things our loved one might say to us. Third, love them to the end. Each of these sounds simple, but we know they are not. However, each of these is important. I experienced each one, and while I was not always successful in accomplishing these goals, it helped me to have them in the front of my mind.

Thanks for reading and commenting, and my prayer for you today is that God will give you the grace to accomplish each of these 3 goals.

Emotions All Over the Place!

During the years that my husband had Parkinson’s Disease, I noticed that he exhibited a range of emotions that grew wider as the disease progressed. At home in a controlled atmosphere, I could usually maintain a level of peace that kept those emotions stable. But when a new person entered the scene, or when we were in a new place, he sometimes became agitated.

My goal in writing this today, as always, is to encourage those of you who care for a loved one with a chronic illness, especially a degenerative disease. Today’s information comes from my daughter, Margie Johnson, who is the middle school principal at the school where I used to teach. Yesterday she spoke to the teachers at her school about how to provide calm in a stressful situation.

Her topic was “De-Escalation”, and as she explained it and gave strategies for accomplishing it, I realized that we who are caregivers need these hints when our loved one becomes agitated. Sometimes they are frustrated as us, their caregivers, but other times these emotions are aimed at a stranger or an unfamiliar situation. But no matter the cause or the scenario, we need to stop the escalation and calm the emotions in the best way possible. At the same time, we recognize the fact that many of our loved ones have cognitive decline which affects their ability to reason. However, in Margie’s talk yesterday she explained that when people are this agitated, they are not thinking reasonably anyway. (This caused me to think these strategies might work with our loved ones!)

There are many occasions when we must share our neurological strength with our loved ones. We can think and reason. We have emotional intelligence, even if our loved ones do not. We also have the ability to rise above the current circumstance, but they may have lost that through the disease. The following suggestions were given by my daughter, Margie, and have come from 2 specific books listed at the bottom of this blog.

1. Ignore the words. It is enough to know they are upset, and sometimes the words they choose in the moment are not really representative of the situation. Instead, seek out the emotion. Listen to what they are NOT saying.
2. Guess at and reflect back the emotions. To do this, use short simple statements such as: “you feel afraid” or “you feel unsupported” or “you feel disrespected” or “you feel frustrated.” These can be in the form of a question, and they let our loved one know that we realize they are upset about something.
3. Raise your emotional awareness and gain control over your attitude and emotions as you detach yourself from their state of mind. As you find empathy for them, ignore their words, especially if they are accusatory or toxic. Be confident and calm, not weak and fearful, and rest in the fact that you care for this person, and you can help them through this.
4. As you communicate with them, let them know that you are there to help. Find a way to connect with them on an emotional level because at this point emotions are all they have!

An event such as this happened to us several years before Carlton passed away. We were in a government office changing a car tag, and he perceived that the employee was being unreasonable. He got very excited, and his dyskinesia became extreme. Both his voice and the employee’s got louder and angrier with each word. Before things got out of hand, I tried to diffuse or de-escalate the situation. He was in a wheelchair which made some of this easier, so I turned the chair toward me and looked into his eyes. I told him that I thought we might be able to come up with a different plan if he and I could go get some lunch and talk about it. He allowed me to push him out of the building toward the car, and eventually, he calmed down. He felt as if he wasn’t being heard, so I assured him I would listen to him.

I hope these suggestions help as you are faced with the need for de-escalation. Thanks for reading, and feel free to share with us what has worked for you in situations like this. Have a great week ahead!

Books referred to in today’s blog: “Seen” by Hutcherson and Williams, and “De-Escalate” by Douglas Noll.

Are You A Psychologist?

Sometimes as caregivers, we wish we had a few more degrees after our name. With MD after our name, we would feel more comfortable when a medical issue came up. I also wanted to be a psychologist because I thought it would help me understand how my husband felt while having Parkinson’s Disease. If I could see how he was thinking, I could understand the motives behind his actions.

Since I have neither of those degrees, I have to use what I have already, and what I can find out through research. One of the hardest things to do is to talk a loved one into doing something they don’t want to do or talk them into giving up something they have been doing for a long time.

Two cases in point – giving up driving and accepting help.

The first – giving up driving (or any other longtime habit). If this has been easy for your loved one, please be thankful, because this is not always the case. If this is difficult for your loved one, here are a few tactics. The first is fear. It is likely that you have tried this already, but it might help to show them the negative results that could happen should they continue. Another method is to ask their doctor to tell them to give up driving. You can call ahead before the next appointment to let the staff know that driving is becoming a problem. Being proactive will let the doctor know that this is an issue. A degree in psychology would help us know the best approach to take here, but if we don’t have one, we have to try anything and everything we know!

Sadly, I have a friend with Parkinson’s who did not give up driving until he had his 3rd accident. Thankfully, no one was hurt except his pride, but I pray that it won’t take 3 accidents for your loved one to concede.

The second – accepting any type of help is difficult for some people. Yesterday I spoke with a young lady who helps to care for her grandparents. They really need help cleaning their house, but they refuse it. Their argument is that they don’t want a stranger in the house. Here are some suggestions I gave her.

Any new person we meet is a stranger at first until we get to know them. So, if we are introducing someone new to our loved one, why not introduce them as a friend first, not an intruder or stranger. It may take meeting them 2 times before they are truly integrated into our home, but in the end, it is worth paying someone to just come for a visit.

After that, I suggested that this young lady stay at her grandparent’s home while the cleaning lady worked. That would ensure that they felt more comfortable having this new friend working in their home. All of these fears are normal, but there are ways we can get around them with careful planning and preparation.

With our arm-chair psychology degree (smiling), with help from friends and neighbors, and with lots of prayer, we can make a difference, especially when lives and health and living well are on the line. Let’s not just settle for the status quo in these situations. Let’s use our resources to make a difference when and if we can.

What are you struggling with in your home? What fears does your loved one have that are holding you both back from living well? Now that you have identified the area that needs work, it’s time to formulate an action plan to make some changes, even if they are only baby steps.

Please let me know how I can help, and until then I will be praying that God will give you wisdom to make the subtle changes in your home. Thanks for reading and commenting.

It’all in how you ask the QUESTION!

Every week as I write, my mission is to encourage and support you who are caregivers of a loved one with a chronic or degenerative disease like Parkinson’s Disease. Caregiving can be lonely, frustrating, and confusing at times, and after doing it for 20+ years, I understand how you feel.

Today I want to talk about a fear that my husband, Carlton had. In his first 18 years with Parkinson’s Disease, we did not see much of a cognitive decline. And in those years he developed a fear that one day he would not be able to talk. I’m not sure where this fear initiated, except that his voice was becoming softer and thinner. We know that this is a side effect of PD that bothers many. During this time he had 3 different swallow tests because that became an issue as well.

About those tests – they were very beneficial, each in a different way. If your doctor recommends having one, don’t hesitate. I’m glad we went through those because the speech therapists who administered them were so helpful.

So, to help calm his fears about not being able to talk, Carlton devised 2 different methods he thought we could use one day if the situation presented itself. He planned that at first, I would ask him only questions that could be answered with “yes” or “no”, and he could squeeze my hand once for yes and twice for no. We even practiced it! It worked well for us.

But, as time went on, he realized that he was becoming weaker, so perhaps he would not be able to use his hands one day. His next idea (and if you knew Carlton, you knew that he had 10 new ideas every minute of every day) was to use blinking his eyes to answer me. I was still supposed to ask “yes” or “no” questions, and he would blink once for yes and twice for no. We even practiced that, mostly when he was laying in bed. I believe his big fear was to be trapped in his body and not be able to make his needs or wishes known.

Here’s how the end of his life played out in that regard. He could talk right up until he went into a coma, but his voice became so soft that I had to put my ear up to his mouth sometimes to tell what he was saying. However, his last audible word, “DONUT”, was quite easily heard. I hope that made you smile.

I want to address one more issue with questioning. Due to cognitive decline, he began to have difficulty making choices to answer my questions. It was typical with us, as it might be with you, for me to ask him what he wanted for lunch (for instance). He began to have trouble thinking of things that he might want. So I changed my questioning to say something like this, “Today we have tuna or PB&J sandwiches. Which would you like?”

That worked for a while with me narrowing things down to 2 choices. But then there came the day when he could not even decide between 2 things. So, since I knew what he liked, not necessarily what he wanted at that time, I just chose for us. That was the end of my questions to him. I decided that if he wanted something specific, he would tell me. But cognitively he could no longer make decisions about anything. Until that day I didn’t realize how many questions I had been asking him. There was a lot of quiet space when I stopped asking for his input! But it was the right choice, and we were both less frustrated.

That process had been gradual, of course, but it was obvious that I was on my own making decisions for us as a couple. Without sounding melodramatic, that was part of the process of letting him go, seeing him move away from me and away from being able to function as an equal partner.

My point in mentioning these things today is that degeneration is a gradual process, and I know you are seeing it at your house. Whatever form it takes, it is natural, and if we embrace it instead of fighting it, life is much more calm. I saw that when I changed my questioning each time, especially when I stopped asking questions altogether.

Today, I am praying for each of you, that you will have the wisdom to know what to do next, and that you will have the strength to make those decisions. Thank you for reading and commenting. I truly appreciate it.

Not Every Day is a WINNER!

Think about this past week. How was it for you? Did every day turn out exactly as you would have liked? Was every day a “winner” in your book? When you went to bed each night, did you always feel satisfied and full of joy?

That would happen in a perfect world, right? But we don’t live in a perfect world!

If I wrote a book about this past week for me, the outline would look like this:

• Monday – almost got scammed on FaceBook Marketplace. (Actually, I did get scammed, but gladly I did not lose any money.)
• Tuesday – huge disappointment when things promised were not delivered, and what I saw was not worth having!
• Wednesday – was promised a gem, but it was actually JUNK!
• Thursday – licked my wounds and nearly gave up.
• Friday – 4 hours of work yielded SUCCESS! And it feels so good.

Your week probably looked very different, but did you have at least one bit of success? One bright spot in your day or in your week? If so, then capitalize on that. Write it down! Mark it on your calendar. And the next time you’re having doubts about why you are a caregiver and why you keep cleaning up messes and why you are so exhausted all the time, you can go back to that writing, go back to your calendar, and remember the times of success.

Looking back over the 23 years of caring for Carlton, my husband who had Parkinson’s Disease, there were many bits of joy mixed in with the difficult times. Now that he has gone to Heaven, I choose to remember those beautiful times as bits of success. Here is one of my favorites:

Our oldest grandson, Nathan, was graduating from UGA. It was a mid-year graduation in early December, and we live 90 minutes from the school, but we really wanted to go. The challenges were: it was cold and raining, we needed to use the wheelchair, we had to leave the house at 7 AM to arrive on time, he had a Foley catheter and we had not left the house with it yet, and parking at the auditorium was at a premium.

Those difficulties prompted me to ask our oldest granddaughter, Sara, to go with us to help. We could not have done it without her help, and there were other familiy members already on the scene who helped. It was every bit as hard as I imagined because life is like that sometimes. It is just HARD! There is no way to sugarcoat that fact.

However, the smiles on the faces of grandson and grandfather as they greeted each other after the graduation were priceless then, they are beautiful even now, 4 years later. I’m so glad we chose what could best be described as a rocky, uphill path, that yielded the greatest reward.

Your choice to continue to care for your loved one may be uphill, and it may be rocky. It may be exhausting and lonely. But it will yield a beautiful reward. So, my message to you today is this: when your heart is full of joy in times of success, write it down. Document it. When you are overwhelmed and discouraged, pushed near to your breaking point, re-visit those beautiful memories of the past, and know that you are doing good work. You are doing the right thing.

Thank you for reading and commenting. God’s blessing on each of you today.

CAREGIVER TIPS for JULY

Happy Mid-Summer to all of you. My goal today, as always, is to support and encourage caregivers of those who have a chronic or degenerative disease. Caregiving can be lonely, it can be frightening, and it can be overwhelming, so my word to you today is to take life one minute at a time. Don’t worry about tomorrow. Just breathe right now, and you will be fine.

Here are 3 things I wanted to share with you today.

#1 We started this practice early after my husband was diagnosed with Parkinson’s Disease, and at first, it was intended just to help us remember what was planned for each specific day. I bought a small whiteboard and markers, and each morning I wrote the day and date at the top, and then listed the events for that day in order with their times. Sometimes I would have a creative moment and add little pictures on the side, depending on the event or the season. That made him smile because I have no artistic ability!

Eventually, as memory became a problem for hubby, this was a great reminder of what I had already told him earlier in the day. Mine was always a one-day board, but a friend of mine does a 3-day list. Isn’t it nice to have options?

#2 Parkinson’s medications react to time and food. If your loved one is having drastic “off” times, consider giving Carbidopa/Levodopa (C/L) 30 minutes before eating. Keep a log of when you give C/L and when he/she eats. Then adjust those times for the maximum benefit of C/L. It is a dance, and it takes work to reap the best outcome from the medication. Feel free to reach out to me if you have questions about this. Remember that timing does matter with C/L. It should be administered by the clock, not by “three times a day.”

#3 I am so thankful to hear that many of you have found my book to be helpful. My prayer is that the book gives each of you hope in your most difficult times. On the last page of the book you will find these 3 important things:

• my website – http://www.hopeforparkinsons.net
• this blog site – parkinsonscaregivernet.wordpress.com
• and my email address – cherylcaregiver71@gmail.com

I love hearing from you, especially when you tell me what you found to be most helpful in the book. I also welcome your questions, suggestions, and comments. Both Amazon and B&N would welcome feedback to use as reviews if you ordered your copy from them.

Thank you for reading and commenting. Have a great week ahead!

HOARDING

Some of you are shocked at the topic for today. You’re wondering what I could possibly say about this and why it is important now, while we are caregiving.

True confession #1 – I may or may not have watched several episodes of the television program “Hoarding” this week. Yes, it is a bit depressing. Yes, it elevates my heart rate to hear the bickering among family members as they attempt to clean up the house that is filled to the brim with “stuff”. So, perhaps I shouldn’t watch it too often. But it does propel me to clean my own house and discard/give away/throw away excess “stuff.”

Today I am thinking about the fact that material things are not the same as a person, but they do remind us of the person. But we all know that we cannot keep everything all our lives. So, here are a few suggestions:

1. If our loved one wants to give away some of their possessions while they are living, we should encourage that, if it is reasonable. My husband wanted to give his grandchildren specific objects that represented his childhood. These were things he thought they would appreciate or enjoy having. Each one was a piece of his history. He gave away some while he was alive, and I am working to be sure the remainder is distributed.
   • In some cases, we might need to prepare the receiver ahead of time for the gift.
   • And in some cases, we might counsel our loved one to choose someone or something more appropriate. But this is healthy behavior.
2. If this is to be a future activity after our loved one has passed, we can take good notes about which items should go to whom. There is one item my husband mentioned which we cannot find. I wish I had asked him to help me find each item.
3. Pictures take up less space than things. Those who really hoard after the death of a loved one seem to equate the item with the person. One way to prevent that would be to take a picture of the item and save the picture. If it is clothing, taking a picture of our loved one wearing the item will take up less space than saving the clothing.
   • Case in point – I gave hubby some silk pajama pants just a few months before he passed away. They were a wild jungle print, something he would never have bought for himself, so we made a joke about it and celebrated the purchase. I took a picture of him wearing them just days before he passed.
   • After he passed, I gave those pants to a friend with Parkinson’s in honor of my husband. To me, that was a celebration! I did not need to hold onto the thing; I could hold onto the picture. And at the same time, I knew our friend, Terry, would remember Carlton each time he wore the pants.

True confession #2 – I don’t have all the answers. I have kept Carlton’s library mostly intact, from the entire wall of his music books to his pictures and diplomas on the wall. I’m not ready to let them go just yet. And I have been told that there are no rules for “when” one must let things go. Everyone says I will know when it is time. However, I continue to make progress by giving away things that were precious to him, taking care that they go to people who will treasure having an object that represents him. Of his 32 shelves of books, this week I cleared one, and I brought some of MY books into that space. That feels like progress to me.

Maybe we can think of giving things away as sharing a piece of who we are. That changes our perspective from a negative (getting rid of) to a positive (giving a gift). What can we share today? I would love to hear your “sharing” story.

Thanks for reading and for commenting. Have a great week ahead.

It’s All in the Brain!

My goal, as always, is to support and encourage those who care for someone with a chronic or degenerative disease such as Parkinson’s Disease, but not limited to PD.

And if we’re talking about brain diseases or disorders, and about degenerative diseases, we understand that while our loved one may not experience all these symptoms, the number and severity of these symptoms may increase as the disease progresses.

First, there will likely be a decline in the ability to carry out executive functions. “Executive function and self-regulation skills are the mental processes that enable us to plan, focus attention, remember instructions, and juggle multiple tasks successfully. Our brains need this skill set to filter distractions, prioritize tasks, set and achieve goals, and control impulses.” – Harvard University website. The leader of our local Parkinson’s support group often says, “Parkinson’s patients can do only ONE thing at a time. Don’t ask them to do more.” If we remember that, we will not become frustrated when we witness it in our homes.

Second, cognitive decline is expected. This includes forgetting when we have just told them the same thing 3 times in a day. All of us will remain calmer if we just repeat it again. Let’s try to avoid saying, “Don’t you remember I told you . . .?” This decline can occur at any stage of the disease. Another part of this is their inability to make decisions. I used to ask my husband what he wanted for lunch. When he couldn’t think of anything, I started giving him a list of 4-5 choices. When it became too difficult for him to make a decision between those, I narrowed it down to 2. Eventually, I stopped asking because he could not even decide between 2 things. That was the result of cognitive decline.

Third, the ability to reason will decline. This is especially significant when hallucinations become an issue. When my husband first “saw” things that were not there, he laughed about it and realized they were not real. But gradually, as his Parkinson’s progressed, he became less able to explain away the bugs that he saw, the water he saw cascading down the walls and puddling on the floor, and then the men outside with cameras taking pictures of him. This can also apply to their care. When our loved one is being reasonable, they may understand that a certain medical procedure is necessary. But as their ability to reason lessens, they may become combative or argumentative about medications or medical procedures.

Over the course of the disease, it becomes clear that our loved ones have changed so much that they no longer seem to be the same person we once knew. It may seem that their personality has changed, and in many respects – it has.

It is normal to grieve the loss of our partner, our loved one, our spouse, while they are still living. But we know that this change is not calculated on their part. Instead, it is the result of the degeneration of the brain caused by the disease. These changes can lead to a reversal of our roles in our relationship and even a distancing emotionally and psychologically. This is normal, and while it is difficult to witness, it is part of letting them go. It is natural and even helpful as they become more dependent on us and others.

Being a caregiver is not easy in any sense of the word. The days are long, and the nights become longer. We become less of a couple, and more of a patient and nurse. We must take over the decision-making even when it is not our strong suit.

BUT the good thing is that we are not alone, and we are doing the right thing by caring for the one we love. As caregivers we must lean in toward our friends, our family, our support group, and our faith. Each of these plays a vital role in our success and our sanity.

Thanks for reading and commenting. I truly appreciate each of you. Please reach out with questions or concerns, and I will be happy to reply.

Check out my new website!

www.hopeforparkinsons.net

A N N O U N C I N G!

On Seeing Michael J. Fox

Yesterday I watched a segment of the “Kelly and Mark Show” as they interviewed Michael J. Fox. Having seen him on television many times before, I was curious to see how much his Parkinson’s Disease has progressed. (My daughter had mentioned to me recently that she had seen him, so I expected a change from his previous interview.)

It was obvious immediately that he was in the middle of an episode of dyskinesia. “Dyskinesias are involuntary, erratic, writhing movements of the face, arms, legs or trunk. They are often fluid and dance-like, but they may also cause rapid jerking or slow and extended muscle spasms. They are not a symptom of Parkinson’s disease (PD) itself. Rather, they are a complication from some Parkinson’s medications”, from the Parkinson’s Foundation.org.

The primary drug for the control of Parkinson’s is carbidopa/levodopa, and over time it causes this uncontrollable movement, sometimes for short periods of time, and sometimes it is extended to as long as 5 hours. We found that one other thing that influenced the intensity of dyskinesia was the level of anxiety. When my husband was upset or worried, especially if he was going to be around other people, his tendency toward dyskinesia increased. It is possible that Mr. Fox was anxious about this television interview, and that may have intensified his dyskinesia.

During the segment, he never stopped moving. He swayed from side to side, his head turned from side to side, and his arms and legs were constantly in motion. He hardly ever looked directly at the hosts, Kelly and Mark, but that is not surprising because his head was never still.

His speech was very difficult to understand. We found that to be true with my husband as well. As the disease progressed, his ability to form his words became less, which made it difficult to understand him. I was reminded this week by one of the last people who saw Carlton, that I had to interpret everything he said at that visit. Besides the difficulty in forming the words, his speech grew softer and softer, until at the end I had to put my ear up to his mouth to hear him at all. Mr. Fox was easy to hear, but not easy to understand. His words were slurred due to the medication and the effects of the disease.

As he moved, the trunk of his body began to lean to his right. It is typical of advanced-stage Parkinson’s people to lean, similar to the Tower of Pisa. It seems that they always tend toward the same side, and perhaps this is due to a weakening of the muscles on that side. Mr. Fox seemed to be able to straighten himself as he realized he was leaning.

I was surprised to see that he stood at the end with very little (if at all) help from the hosts. He was hunched over, which is not surprising, and he was not stable or steady, but he did stand.

In our experience, my husband was very tired at the end of each episode of dyskinesia. It is logical to expect that he expended so much energy during the extended movement, that he was exhausted when it was over, and he usually slept for long periods of time. The physical energy expended matched the emotional energy it takes to be with people. I expect that Mr. Fox was mentally and physically spent after that interview.

While I began to watch the interview out of curiosity, I continued to watch until the end out of respect for Michael J. Fox and for my husband, Carlton Hughes. My emotions ran the gamut from embarrassment for him, to compassion for him and his family, to thankfulness for all that he and his foundation have accomplished, to pride in him for having the courage to make this public appearance. It was not easy to watch because it brought back so many memories.

This coming Wednesday will mark the second anniversary of Carlton’s passing from this life into the next, and yet it seems like just yesterday in many ways. As I type this blog today, my emotions run the spectrum, but they land on thankfulness. I will expand on that next week as I make an exciting announcement, so please stay tuned!

But today I am thankful for you, my readers. My prayer is that God will bless you with the strength and wisdom you need for today. Have a great week!

Awkward Situations

We have all been thrust into these, whether of our own doing or someone else’s. And at the time, the prevailing thought is usually, “How do I get out of this gracefully?” I found myself in just this space yesterday, and I was the cause of it. Without being too critical or over-analyzing (which I have been doing since the event), I will just admit that I acted without thinking. But it is done, and the best thing for me to do now is to learn from it.

But we had many of these experiences when I was caring for Carlton, and those were due to the degenerative aspect of Parkinson’s Disease. I realize this doesn’t happen to everyone with a neurological disease, but for him, when he became anxious or angry, his tremors were much worse and uncontrollable, his voice became much louder, and he began to panic. It was as if he was out of control and couldn’t calm down.

The most memorable experience was in a government office when he perceived that the government employee was not listening to him. This was about year 10 in his progression of the disease, so he could still communicate easily, and he was not cognitively impaired. When the lady didn’t answer his question satisfactorily, he repeated it with increased volume. She gave him the same answer again, which frustrated him even more. After repeating the question and getting the same answer a 3rd time, he was very angry and frustrated, and he began to shake violently. His whole body shook!

I was glad I was there to help, but simultaneously I wished I could be anywhere else in the world at that time. It took calmness, diplomacy, redirecting, and patience to “talk him down off the ledge” and get him out of that office. Perhaps I forgot to mention that there were at least 10 people in the same room, watching and listening to the entire exchange. That added to my embarrassment, and it made it even more necessary that I get him out of there.

One saving grace was that he was in a wheelchair (due to the long walk from the parking lot), so I had some control over his location. But I still had to get him to agree to go peacefully. Here’s what I did. I brought my face down on the level with his, turning his chair slightly to face me, and I said something like this, “We aren’t getting anywhere with this conversation, are we? So, why don’t we come back another day when we have all calmed down. This doesn’t have to be resolved today. Okay?”

It was important that I did not judge him or the government employee, especially in public. And it was important that he realize that we didn’t have to resolve the problem at that moment. I remember thinking, “We have to get out of here as graciously as possible!” Preserving my husband’s dignity was always my goal, whenever possible. (Preserving my sanity was a close second!)

There were several other similar situations, especially as Carlton lost more control of his body and mind. And I never knew beforehand what I was going to say to him to diffuse the situation because I never knew exactly how things would play out. But I prayed often that God would give me wisdom and strength. I needed wisdom for the myriad of decisions each day. I needed the strength to act when it was appropriate and necessary. And God granted me those things every time I needed them.

I was as perfect as you are.

And I cared, just as you do.

These awkward situations may come, but they do not define us. They are part of being human, and for our loved ones they are part of dealing with a disease, whatever it might be.

Let’s make a gracious exit, dust ourselves off, and learn from them what to do to prevent a “next time.”

Have a great week! I’m praying for you.

Resentment Sometimes?

There are moments in a caregiver’s life when we feel powerful, in charge, successful, and satisfied that we CAN take good care of our loved ones. However, there are also moments when we are so weary and worn out that we despise the fact that we have to do this caregiving. Even though I am not a social worker, not a psychologist, and not trained as a counselor, I believe these feelings are normal. In full disclosure, they have been normal for me.

My goal has always been to encourage and support those who care for a loved one with Parkinson’s Disease or any other chronic disease or condition. And at times we have to mention difficult topics like resentment. It is a real thing, and it often hits us when we don’t expect it.

I believe the secret is to not let it “make a nest in our hair.” Don’t let it continue. Don’t feed it. So, to banish it from our minds and hearts, we have to have a plan. I subscribe to “Daily Caring.com” which produces a newsletter that comes to my email inbox, and this week the lead article was:

“5 Ways to reduce caregiver resentment”

In my simplified version of the article, here are some steps we can take to leave resentment behind and replace it with joy and contentment.

• Take a step back and evaluate the situation at home. What is going well?   What things MUST be changed for you to have balance in your life? (Make a list!)
• Explore some options to get help with caregiving, even for a short period of time. Who or what can you do to give yourself the break that you need?
• Take care of your own basic needs like sleep, eating healthy, some form of relaxation/mental stimulation. We must take care of ourselves first so we can care for others.
• Take a break every time there is an opportunity, like when they are asleep, when they are in the dentist chair, when they are occupied with a TV show that will keep their interest. Use that time to do something you enjoy like reading, playing the piano, writing, drawing, cooking, whatever brings you joy. Then congratulate yourself for using that time for YOU!
• Find your own support system of close friends, family, support group, or church or civic group. At least find one person on whom you can call when you are ready to pull out your hair in frustration. We all need to vent from time to time, and we need to do that without fear of judgment from someone. Venting is healthy!

The bottom line is this. Resentment rears its ugly head occasionally, so today we have armed ourselves with 5 suggestions to squelch it. Caring for ourselves is as important as caring for our loved ones, so we cannot neglect our own mental and physical care.

What else do you do to overcome feelings of resentment? Are you caring for yourself first? I am praying for each of you today, that God will be close to you and remind you of His love for you. I also pray that He brings some small bit of joy into your life today to ease your burden.

Thanks for reading and commenting. I truly appreciate each of you.

JUST TWO THINGS:

Here are two things I’m thinking about today:

First

April is Parkinson’s Awareness Month. Every 6 minutes someone is diagnosed with PD. That is hard to imagine, but true. The best news about that is that there are resources to help us understand the disease and figure out how to learn to live with it. One resource is the Parkinson’s Foundation. Check it out online.

The Michael J. Fox Foundation is another valuable resource. They are doing great work in research and development of new medications and new methods of delivering those medications to get them into the bloodstream quickly for faster results. You can sign up to be on the email list for both of these organizations to keep up with the latest developments.

Another resource is on a path toward being printed – MY BOOK! It seems like we have been talking about it for a long time, but it is being printed and will be available in the next few months. I will keep you posted.

Second

My heart is heavy after hearing of the passing of a dear friend this past week. His wife is one of my loyal readers and commenters, so I want to publicly extend my sympathy to his wife and family. Bill did not have Parkinson’s Disease, but his wife reminded me that my blog is for everyone who cares for someone with a chronic degenerative disease, not just Parkinson’s. Caregiving is not confined to one disease. Instead, it is caring for our loved ones no matter what. And I believe they can sense our love and care in our words and our actions, even during the most difficult times.

As we think of the passing of our loved ones, sometimes our emotions run the gambit from one extreme to the other. We are sad to see them leave us, yet we are relieved that they are no longer confined to their diseased body. It is grief wrapped up in peace. It is sadness wrapped up in joy.

It is also sudden, even though it has been coming for years. We expect it, yet it seems to surprise us. Letting go is not easy. Letting them go seems counter-intuitive. They have been our partner, but we have watched them fade away.

To end on a positive note, I choose to remember the best times of life with my husband, Carlton. I relish those many times we sang together, played piano and organ together, and shared private jokes together. Those were the good times, and his memory will forever be etched on my heart and mind.

I also choose to remember the good times with my dear friend, Bill. His sweet spirit and brilliant mind will never be forgotten. Today I pray God’s peace and comfort for his dear wife, Tootie, and their entire family.

When the Shoe is on the OTHER Foot!

For more than 20 years it was my husband, Carlton, who was ill. Parkinson’s Disease progresses slowly at first, and in the initial years after his diagnosis, his symptoms were just a minor inconvenience. But as it progressed, the effects of the disease were more acute, the doctor’s visits were more frequent, and the variety of symptoms increased. It was always Carlton who was the patient. (And I was very comfortable with that!)

But since his passing nearly 2 years ago, he is not here. He is not the patient. All eyes are now on ME! That was never more true than this past week when I found myself in the emergency room of our local hospital, a place where we took Carlton several times!

That location brought back memories of caring for him and memories of the mental trauma he experienced the last 2 times he was at the hospital. Sadly, hospitals can cause extreme distress for Parkinson’s patients, especially those experiencing cognitive decline. A trip to the hospital in that case should be the last resort.

Thankfully, the hospital released me that same night. But I have learned several lessons from that experience:

1. Medication is important, and once you begin taking it, consistency is necessary until your doctor instructs you otherwise. Some prescriptions send your body into a tailspin if you stop them suddenly.
2. It is really nice to have a family member or friend with you at the hospital. (I’m so thankful for my daughter and her willingness to stay with me.) Don’t keep telling them to leave. They probably won’t do that anyway, and having an advocate there with you is comforting.
3. Medical procedures can be frightening. Let’s be patient with our loved ones when they are the focus of the care, just like we hope someone will be with us when it is our turn.
4. I am thankful for medical professionals, especially those who are patient and kind to those in their care.

And I am thankful for you, my readers. Have a great week ahead, and I hope you can stay out of the emergency room!

Three Little Things

The first thing on my mind this morning is sleep.

When I was caring for my husband who had Parkinson’s Disease, it seemed like I never got enough sleep. Either he was calling my name or falling out of bed during the night, which always interrupted my sleep cycle. He had the ability to fall back to sleep easily, but not so for me. As a caregiver, I was always tired. I dreamed of the day when I would be able to sleep all night!

As to my husband, he went through phases of needing 8-10 hours of sleep per day, to 4-5 hours a day, to 12 – 18 hours per day! I worried about him, and as it turned out, my worry was needless. When we visited his neurologist, they would always ask about his sleeping. And when he said he had difficulty falling asleep, they prescribed melatonin or another sleep aid. But they never acted worried or surprised about whatever he said about sleep. So, I learned that it is common in PD patients for their sleep patterns to vary quite often.

Recently I have been using my AppleWatch to track my sleep. It is fascinating to see how many hours I sleep, how much of it is REM sleep, how long I lay awake without sleeping, etc. And I am happy to tell you that since my husband has passed, my sleep has become steady and comfortable and peaceful. Hallelujah!

The second thing on my mind today is medication.

This past week I spoke with a family member of a gentleman who is recently diagnosed with PD. We were talking about his medications, and I thought of several things that are important for the duration of any disease. To me, it was important to learn how to say the name of each drug so I could talk about it intelligently. The timing is also important. For Parkinson’s, the go-to drug is Carbidopa/Levidopa. Almost every PD patient takes it, and it must be taken at specific times prescribed by your doctor because of its absorption into the bloodstream and its short length of effectiveness. It is TIMELY. And for that reason, as it becomes less effective, the doctor will increase the dosage and the frequency when taken throughout the disease. As the years progress, it may become important to have a way to remind the patient or caregiver when it is time to take these medications. We just do whatever it takes to take the pills at the prescribed time.

The last thing I’m thinking about today is embarrassment.

Many Parkinson’s patients are embarrassed to have people realize they have this disease. Sometimes that feeling is because of dyskinesia (involuntary movement), sometimes it is due to freezing or slowness, or other symptoms they feel are obvious. When our loved one is self-conscious, it is a real and valid feeling, so we must be sensitive to that. When we attended the Parkinson’s Support Group in our area, there were times that Carlton just didn’t want to go. He didn’t want to see people who were worse off than himself. He didn’t want to see what he might look like in the future. He also realized that the people who had had the disease longer were soon going to pass away. One day when we did attend, I remember that he said this on the way home, “I think everyone was looking at me and thinking that they hope they don’t ever get this bad!” That was the last meeting Carlton attended. To preserve their dignity, we must be sensitive to their feelings of embarrassment.

Caring for a loved one involves so many thoughts and emotions and adjustments and layers, doesn’t it? My prayer for you today is that God will give you wisdom and strength to care for your loved one, just like God gave those 2 things to me. Have a good week ahead, my friend.

DECISIONS

When my husband was diagnosed with Parkinson’s Disease in May of 2000, we began a journey filled with difficult decisions.

• How much longer should/could he work?
• When should he stop driving?
• When could he no longer stay home alone?
• Did he need a feeding tube?

The list goes on, and for you and your loved ones, there might be many other decisions added to it. Some decisions are easy and seemingly insignificant, and we just make them on the fly. Other decisions are monumental and require research and hours of debate, whether with ourselves or with family members.

Each time we were faced with another decision, we had to weigh the pros and cons, and then make the choice we felt was best for us and our family. It is what we do as caregivers, isn’t it?

This week I received confirmation that a long-time friend has been placed in an assisted living facility with memory care. At first, this seemed to me like a sudden decision, but as I thought back, it has been coming for the last 5 years as we noticed her cognitive decline.

My heart aches for her family because they had to make such a difficult decision. Even though we never had to face that decision in our family, I can imagine the hours of soul-searching someone might experience when making such a decision. And even after the decision is made and acted upon, I know there are times when one doubts if it was the right one.

As a friend and fellow caregiver, this is how I feel about my dear friend and her family.

          I cannot second-guess their decision. I am sure they made the best decision for everyone involved, for my dear friend, and for her children and grandchildren. Going forward, I will support their decision and try to encourage them to keep visiting her and providing her with ways to remember the past when she was active and happy. I will also encourage her family to advocate for her when necessary, as she needs someone to speak for her. My prayer for my friend is that the staff will treat her well and that her time in that facility will be pleasant, at best.

Maybe you and your family are facing a difficult decision concerning your loved one right now. If so, I pray that God will guide you in that decision and that your family will be in agreement as to the final choice. When the decision is made, don’t look back. Instead, look forward, but keep watch over the situation in case you need to make a course correction!

Thank you for caring for your loved one. Sometimes it feels like a thankless job, but the greater reward is coming. Thanks for reading, and have a great week!

Life is like a CHALLENGE!

This morning I’m thinking of this quote from Forrest Gump, “Life is like a box of chocolates. You never know what you’re gonna get.”  And this quote from Carl Sandberg, “Life is like an onion; you peel it off one layer at a time, and sometimes you weep.”

Do either or both of those describe your life right now? If they do, I think that means you are probably a caregiver! We never know what today will bring, and life is one layer at a time. And yes, sometimes we savor the moment because it is sweet and wonderful, just like a great piece of chocolate. Other times we cry because life is difficult while caring for our loved ones.

I get it. I lived it for about 23 years, and now I am on the other side. Even though caregiving is in my past, I am learning similar lessons in my present. And my prayer is that in some way I can encourage you to persevere, to stay the course, to refuse to give up, and to NOT give in to depression and despair.

One way to make it from one day to the next is to see life as a series of challenges. If you are competitive like me, you enjoy winning or succeeding, like at a game. You might think of these challenges as mountains to be climbed, or favorite siblings to beat, or contests to win, or personal goals to achieve. It does not matter what scenario you choose, only that you realize you CAN be successful and “win”.

You are a caregiver and you have the skills needed to be a GOOD caregiver. The main requirement is your desire to care for your loved one. That is the first requirement.

The next requirement is persistence and determination to be successful. One of my favorite online games to play is “Rush Hour.” The version I play involves a parking lot with a bus in the middle, surrounded by cars. I have to maneuver the cars in such a way as to free the bus to exit the lot. Recently I finished level 12 in this game with relative ease, but level 13 seemed to be unsolvable. I worked on it for longer than I care to admit, and I still was unsuccessful.

This was a challenge I could not conquer, so it seemed. So, I left it for 24 hours, and then went back to the game. I was still unsuccessful. I left it again for 24 hours. But this time when I went back to it, I began the game from level one, thinking perhaps there was a simple skill I overlooked in the earlier levels. Hopefully, that skill would help me solve level 13 when I arrived there.

I DID IT! That was what was needed. But think back to those strategies next time you meet a challenge. Can you leave it for a while to get some distance from it? You might have to do that twice! Can you begin again at the beginning to see if there is an elementary skill you have overlooked?

I cannot begin to know every challenge that is facing you today. But this I know – we each need to dig deep sometimes to find the courage, the resolution, the tenacity, the endurance, and the staying power to see this challenge through to the end.

My prayer for you today is that God will grant you the resolve to do that. To see a challenge and not give up until you have succeeded. Have a great week ahead!

My Word for 2023

Each year I choose a new word on which to focus for the next 365 days. Since I began this habit, I have chosen words like courage, thankfulness, balance, and grace. They have served me well during each specific year as I have needed to remind myself of all those words embody.

This habit began after I read this little book.

The idea is to replace a list of New Year’s Resolutions with just one word on which to center our thoughts and our perspective for the coming year. In essence, we simplify the list into just one word around which we focus our entire year. Because we cannot see the future, we cannot know today exactly how this year will unfold, and we cannot imagine how this new word will impact our next 365 days, but we feel that it will!

So, after careful consideration and prayer, I have chosen ADVENTURE for my word for 2023. I want to plan some adventures, but I also expect to be surprised by what exciting trips and experiences and expeditions are in my future.

I’m not sure where this year will take me, and neither are you. It is a blank slate! And it may not take us anywhere physically, but as the year unfolds, we can expand our horizons emotionally and spiritually and personally in many ways. Those can also be considered adventures!

Another aspect of adventure for me is that I cannot wait for things to happen to me. I have to take the initiative to improve my situation, even if it is only by baby steps. What can I do where I am to be adventurous? To create an experience?

I have some ideas, and I’ll share them with you during this next year. But the truth is that it all begins with me. And at your house, it begins with you.

My prayer for you today is that you will look at 2023 as a new opportunity, a new beginning, a blank slate on which you can draw beautiful pictures. What will you draw?

Christmas Eve Day Musings

Here are a few things I’m thinking about today:

1. No fear! When given the opportunity to try something new, to take a risk, or to step out of our comfort zone, I pray that we will not be afraid. The experience might be awesome! We’ll never know unless we try it, right? To quote a Kroger commercial, “Today’s experiences are tomorrow’s memories.” So true!
2. Going places is not always possible for caregivers and their loved ones, especially when it is 9 degrees outside! Yes, friends, it is 9 degrees this morning in Georgia! That means we have to create our own celebrations and do things differently. (We all remember that we learned how to do this during COVID, so we just adjust and adapt!) We can recall special memories, listen to our favorite holiday music, watch old or new holiday movies, and enjoy comfort foods. All of these things can make any day a special one!
3. Every day is a good day to give thanks for our blessings. What are you thankful for today? I am thankful for alone time when I can do exactly what I want. I’m also thankful for time spent with friends and family, even when it’s just FaceTime or a phone call. I am thankful for holiday sights, sounds, and even smells, reminding me of days gone by. And I’m thankful for forgiveness and second chances. They lead me to #4.
4. Hope. Hope for the future, whatever it holds. We have had many days without sunshine lately, and as gloomy as they have been, we hold on to hope for the days when the sun WILL shine, when tomorrow will bring a chance for a new experience and a new beginning. So, let’s write in our journals on good days, celebrating little successes or blessings, because there will be gloomy days when we can come back to our journal and remind ourselves that there have been good days, knowing that there are many more to come. No situation is hopeless. God is with us, no matter what, and God will see us through to better days.

The message of Christmas is multi-faceted. God sends to us salvation in the form of a baby, the angels sing of “No Fear” and peace, and the whole experience is one of HOPE for the future. We can trust that God will keep His promises to be with us, to comfort us, and to guide us into the future. Thanks be to GOD!

SIMPLICITY

During December when families and calendars and celebrations might get complicated, or when we become overwhelmed, we can go back to the simple things of life. That is where we will find peace and calm for our bodies and our souls. That is where we can experience balance and a re-setting of our inner selves.

SIMPLE REQUESTS often come from our loved ones. Let’s grant them whenever possible.

SIMPLE PRAYERS such as “Thank you, God” and “HELP” are sometimes all we can express. The best news is that God understands, hears, and will answer.

SIMPLE LIFE is filled with enjoying the sights and sounds and smells of the moment. It has nothing to do with how busy we are.

SIMPLE PLEASURES might include those sights, sounds, and smells, and they might recall memories of days gone by, even Christmases past.

SIMPLE TRUTH is this: Our faith, our family, and our friends are the most important things in life. Everything else is either fleeting, or it can wait.

My prayer for you this month is that you will enjoy whatever you love and whomever you love during this season. And through it all, let’s remember “the reason for the season.”

Can We Be Thankful for Problems?

It seems to be an oxymoron to say that problems are a blessing. And perhaps as we are deep in the middle of the difficulty, it doesn’t seem there could be any positive result or even outcome. But in retrospect, we can see that living through those hard times made us stronger and gave us the ability to weather even more serious storms in the future. Many times, the result is that we are presented with opportunities we never would have otherwise.

If all of this seems like philosophizing, let’s move from the theoretical to the practical. Here are 2 scenarios that have recently come to my attention that bear out these truths.

The first is Joni Eareckson Tada. I remember when she was injured in a diving accident that left her quadriplegic in 1967 and how that accident seemed to be a tragedy. Her vibrant life as a 16-year-old was changed forever. This morning I watched a recent interview with her, and her testimony is the same as it was in the 1970’s. She is thankful! She has been privileged to minister to thousands of people due to her disability. She is thankful for the opportunities that have been afforded her that might not have been otherwise as she shares her faith in God, and her sweet thankful spirit is contagious. Her story and resilience gives hope to others who are in similar situations.

The second is more personal. It is the story of my first-born granddaughter and her husband. They were married recently in the middle of seemingly endless adversity. Here is an incomplete list of things that caused problems: money, venue, a bridesmaid, a groomsman, family issues, a hurricane, a sound system that was not working, and more problems with the venue. So many problems! While I would have wished that they had not had to go through so much difficulty to just get married, I know it will make them stronger in the long run. Only God knows what problems they will have to face as a married couple/family, so I believe God is preparing them even now for the future. I am so proud of the 2 of them for their determination and loyalty to family and to each other.

To my other 4 adult grandchildren who may read this, some of you are also facing problems concerning your future, your marriage, and your career choices. Perhaps a lesson to be learned is this: take each problem as a way to exhibit who you are. Your character will come through with each decision and each mountain you must climb. Think about who you are, and act accordingly.

To those of us who are caregivers, we must do the same. Every response, every decision, and every action should reflect our character. Who am I? I want to always be kind, always be fair and just, and always value every person I meet. I also want to reflect who God is. I want to show God’s character to everyone I meet by my actions and attitude. It is good to keep our life goals and life mission in front of us every day. That keeps us centered and grounded, and it keeps us on the right track.

Difficulties will come. Challenges will loom large in front of us. But God, who loves us and who has created us, will be with us and give us the courage to plow ahead, to climb the mountain, to accomplish what needs to be done.

Let’s surround each other with care, with help, and with prayers as each of us navigate the difficult times in our lives. And let’s be thankful!

I am thankful for each of you, and I pray God’s blessing on your today.

From My Journal

Even though it was 2020 when Carlton passed into Heaven, this morning I re-read some of my journal entries from 2018. I wanted to remember how things were, what I was feeling, how HE was feeling, and what was happening at that point in our lives.

I read it because of you. I know you are going through similar things at your house, and I wanted to remember exactly how I felt back then. My message to you today is this: take a few minutes right now to write how things are at your house today. Then the next time you think about it, write a little more. You don’t have to write every day, but write every time you think of it and have 5 minutes.

Here is an excerpt from my journal:

March 7, 2018

Now he is getting pills stuck. From my experience at Emory with the x-ray, I remember that little “shelf” where bits got stuck, and I believe that is where the pills are ending up. It seems to be Rytary and Gocuvri, not the little pills. So, what do we do? Will a feeding tube be next? Will we have to go back to the non-extended release so we can crush or open the capsules? I will call Dr. Kozinn this morning to let him know. Carlton is really worried, and I understand it. Each time a pill hangs up there, it makes him more worried the next time he has to take a pill.

Many of my entries are about his physical condition and changes that I saw along the way. I wanted to remember when I first noticed specific things. This written record came in handy when I had to tell a doctor how long he had had a certain symptom.

Another part of my journal was written after a dear friend died of Parkinson’s, and we went to the funeral. Here is an excerpt:

I don’t always know what to say when he talked about death on the way home in the car. Neither of us has been with someone when they have died, so I don’t really know how to react. I reached out to a pastor friend, Rev. Lee Lallance, today, and he told me that sometimes they don’t want an answer, just to have someone listen. I don’t have any experience here. So, I feel like I’m just flying blind. But neither does Carlton, so I guess we will just do what comes naturally.

Today I am praying that God will spare him having to suffer or linger when it is time. I think Carlton worries about that. I also pray that I will say comforting things to him, not words that agitate him, when he does express himself.

I am also praying for wisdom in making decisions so I will know what to do when the situation needs a decision. I believe God will give me help to keep Carlton’s dignity and help me comfort him in each new phase.

I am so thankful for friends who encourage me and Carlton. They seem to know when they are needed and that makes a huge difference.

Many of you are these very friends and family of which I wrote. Thank you for the many times you reached out to us and made a difference in our lives.

If you haven’t been writing, please begin today. Write how things are at your house. Write what you’re thinking, what you’re praying about, and write your thoughts. After today, every time you think about writing more, do it. You will be glad you did.

Reading back over my journal is not something I do often, but when I do, I am even more thankful that God was with us at that time, and that God has brought us through that time. The Bible says that we need to remember so that we can express our thanks for God’s care and comfort during difficult times. We need to shout it from the roof-tops –

God is faithful.

God will provide.

God is with us, even in the difficult times.

Thanks be to God!

Do Caregivers get Sick?

My goal has always been to support and encourage those who care for a loved one with a chronic or degenerative disease. Today is no different. There is hope, my friend, so please don’t give up!

For the last 3 days, I have had a raging sore throat, a headache, and body aches. I think I have the flu. When I realized that, my mind went back to when Carlton was alive, and while caring for him I remember what happened every time I began to feel sick. His first response was, “You can’t get sick!”

It frightened him to think that I might get sick. That I might get to the point where I could not care for him as much as I needed to. He felt helpless, and he relied on me for EVERYTHING! It was as if he was saying to me, “I will DIE if you get sick!”

While it is true that things change when caregivers get sick, it is important to NOT panic. That might cause our loved ones to panic, and that is not what needs to happen. I really tried to keep any illness to myself when he was alive, but coughing and a change in voice due to a sore throat are hard to mask.

We all get sick from time to time, and the good thing about colds and flu is that they are usually temporary. They will not last forever. So, during the time we are feeling ill, how do we handle our loved one, the one who is used to us being so positive and in charge?

First, we cannot feel guilty about being sick. We didn’t choose it or cause it to happen.

Second, we will need to let some things go. The house might not be as clean as usual during our illness, the dishes might not get washed as quickly, we might not be able to be at their beck and call as quickly, and we may not be able to see to meals at the usual time.

Third, we need to give ourselves time to rest. In the past, we might have worked hard while our loved one napped or slept, but now we might need to nap also. We need rest. And we cannot feel guilty about that. Rest will help us heal more quickly.

As winter arrives and colds and flu become more prevalent, I hope you’ll remember these suggestions, especially #1. We cannot feel guilty about getting sick. It happens. Let’s just ride it out, rest more than usual, and let unimportant things go during that time. This too shall pass. We must take care of ourselves.

One last analogy. In the airplane when they talk about the oxygen mask falling down when the air pressure drops, they always say, “Put the mask on yourself before helping others.” For caregivers, this translates into “We must take care of ourselves before helping our loved one.”

Have a guilt-free week!

This is Really Bad, But , , ,

When life is difficult, it is normal to wish it was not! As a caregiver, life is sometimes really difficult, and it does no good to sugar-coat it. Caregiving is not always pleasant. However, I learned a valuable lesson this week about difficult times, so I’m passing it on to you.

Due to the effects of Hurricane Ian, on Thursday afternoon we had very gusty winds at my house, and a huge tree limb took out my satellite dish. So, I have no television reception, even to this day. How inconvenient! But my brother who lives in Florida had even more wind and rain, and he has no electricity at his house. They are using a generator, and they have no guarantee as to when the power will be restored. Therefore, I am thankful that it is only my television that doesn’t work, and the repairman is coming this morning. Hopefully, he can fix it today.

We have had a few cold mornings lately, and when I tried to turn on the heat in my house this past week, nothing happened. No heat. Nada. I had to resort to turning on the oven and warming up in the kitchen. After calling the HVAC guy, he came out to assess the situation, and he said I need a new blower motor to the tune of nearly $500. On NO! But the good news is that it really isn’t cold yet here in Georgia, so I really don’t NEED the heater yet. That means I’m not shivering while waiting for the blower motor which will hopefully come next week.

Life always has its little twists and turns. There are always new inconveniences, but in the midst of those difficulties, there are always things we can be thankful for. There are always little blessings in the middle of trials. Maybe there is a new person we meet who is especially kind to us. Maybe we see flowers along the path that make us smile. Sometimes we have to really LOOK HARD for those blessings, but I expect they are there all the time.

So, today, when life is inconvenient, when you are feeling that caregiving is so hard, look for some little blessing that God may have already planted along your path to make you smile.

My prayer for you today, my friend, is that God will encourage you in this difficult task.

Thanks for reading.