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.

When Communication Becomes Difficult

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

Recently my daughter reminded me of one thing that Carlton was always worried about. He was afraid that he would get to the point where he could not communicate verbally. He did love to talk, and he loved to express his opinion. (I smiled as I wrote that!)

As Parkinson’s Disease caused so many changes in his body over the years, he was mostly bothered by not being able to be understood when he spoke. His voice became softer and softer until at the end I had to put my ear up to his mouth to hear him. And he hated to have to repeat himself. But sometimes there was no other way to hear him. We even tried a little microphone that he wore around his neck which helped for a time.

Before we got to that stage, he often told us that if he could no longer communicate orally, we could ask him yes or no questions, and he could signal us his answer. My suggestion was a “thumbs up or down” type of answer. He liked that idea, and we did that for a while when he could remember to do it.

He was even worried that he might not be able to move his hands enough for that, so he thought he might reply by blinking his eyes. His idea was to blink once for “yes” and twice for “no”. That worked somewhat, but it was time-consuming and awkward.

That was the physical act of answering, and we talked about that often. However, we didn’t plan for the mental part of him being able to find the right words to reply. I found that as his cognitive abilities declined, I asked fewer and fewer questions. I also asked questions that just required a “yes” or “no” answer so he didn’t have to hunt through his brain for an answer.

Instead of asking what he wanted to eat for breakfast, I began to just declare what we were having which did not even require a response. Making choices seemed to frustrate him because his mind could not make decisions easily. I ended up doing much of the talking at the end of his life, but he seemed to be comfortable with that.

I recounted for him all the reasons we were thankful to God – for each day we had together, for all the blessings of God’s creation, of the gift of our friends and family, for our faith that gave us a foundation of truth and life, and the list goes on.

As you read through this blog post you probably noticed a shift in communication from duality to singularity. And that is to be expected, even though it is not true in every case. As caregivers we may become the ones initiating and carrying the conversation, so let’s spend our days in thanksgiving for the blessings that have come from God.

Thanks for reading and have a great week ahead. I am praying for you.

So Many Choices

When I began this blog 3.5 years ago, I read that I should set a goal for my writing which would keep me focused and give purpose to this space. My goal is still to encourage and support those who care for a loved one with Parkinson’s Disease or any other chronic or degenerative disease. Since the passing of my husband who had PD, my goal has not changed even though my life has changed dramatically.

Today my mind goes to the many choices we must make daily – sometimes simple ones, sometimes those that require much more thought and consideration. Some choices are “no-brainers”, whereas others are so difficult that we feel crushed under their weight.

Some choices are benign. Their result barely matters, but other choices could be matters of life or death. This is not a new topic, and I have written about it in past blogs when we needed to choose between Hospice care or not, between a feeding tube or not, between a Foley catheter or not. Those are significant decisions and need information, advice, and even family input because of their weight.

But what about the choice of our attitude? What about priorities? What about choices of heart issues? Those are less visible, sometimes less intentional, but equally as impactful. These decisions influence how we feel about each other, how we feel about ourselves, and how we cause our loved ones to feel about themselves.

As our loved one’s condition changes (and with a degenerative disease we do expect constant change whether we notice it every day or not), sometimes our priorities must change to fit our situation. I remember vividly that near the end of Carlton’s life it seemed that every day brought a shift in his mobility and/or ability to participate in normal daily routine. That meant that I was shifting almost daily, and it was exhausting!

Through it all, I tried to keep several priorities ever before me, even to the point of writing them down in a place where I could see them often throughout the day. They were these: keep him safe, keep him clean, and keep him calm.

Some of you are smiling as you read those 3, knowing how difficult each one is with a Parkinson’s patient!

• Safety means not falling. What a huge task! That was a full-time job!
• Clean means bathroom help which needs no explanation to us, right? (Smiling)
• And calm is constantly changing – from paranoia to fear to hallucinations.
  

These were my priorities, but complete success was/is unattainable. Let’s get that straight. But they can still be goals for which we aim, knowing that they are good for us and for our loved ones.

What other goals would you add? Your goals should fit you and your loved one, but they don’t even need to know about them. These are for us as caregivers. They give us focus and purpose.

Today we have talked about goals centered around our loved one, but next week let’s talk about goals for ourselves. Have a great week ahead, and thanks for reading and commenting. I am praying for you.

Are We OK With Apathy?

Much has been written about apathy on the part of patients with a degenerative disease such as Parkinson’s. Sometimes it seems as if they just give up. But if we look at it through the eyes of the patient, we might see things differently.

They know their disease is going to only get worse. It is degenerative. They realize they are going to slowly lose mobility and lose the ability to do the things they have loved to do. That knowledge could cause anyone to “give up.”

They also begin to realize that doing things and going places takes much more energy today than it did just a few months/years ago. Sometimes they might even reason this way, “Is it worth all the work since I tire so easily?”

They might also realize they will need help today doing things they used to do easily alone. I remember the first time Carlton couldn’t even turn a screwdriver to tighten a screw. He had to call me over to do it. Maybe they realize that whatever they WISH to do, once they begin it, they won’t be able to finish it and they will need to call us for help. That must be humiliating to not even be able to handle a screwdriver!

As the disease progresses, they may realize that going places means much more work on the part of us as caregivers. We need to consider whether we will need to take the next dose of medication with us, consider the bathroom facilities, take a change of clothing just in case, and take a cane, walker, or wheelchair.

And have we thought ahead about stairs wherever we are going? Wheelchair access? There are so many things to think about.

Switching to us as caregivers and how we view apathy, I will admit that Carlton went through a period of it, but only near the end of his life. For the first 19 years, he was very driven by writing and researching because it was something he had always wanted to do. But by year 19, it became very difficult to read for any length of time, and he could not make his hands work on the computer, so he could not write much anymore.

At this point he became apathetic, content to sit and watch television or just sleep. So, I had to adjust my thinking and realize that this was a new phase. He was tired, and he was tired of having Parkinson’s where everything he wanted to do was so difficult. I had to be content with him doing whatever he could, even if it was NOTHING!

I will admit that I was blessed with a husband who did not become combative or abusive or angry with Parkinson’s, and I realize that is not true for everyone. On days when I complained to a friend that Carlton was apathetic, my friend reminded me that Carlton didn’t ask to have Parkinson’s. He asked me, “How would you feel if you realized your mobility was being limited every day and it was only going to get worse?”

Thinking about apathy from the perspective of the PD patient might help us realize that apathy is not our enemy. Our attitude toward it might just need to be shifted slightly to view it from our loved one’s perspective.

Let’s release our loved ones to whatever they are feeling and give them the freedom to enjoy each day as much as possible.

Thanks for reading and have a great week ahead.

Ten Things I have Learned from Parkinson’s

It is no secret that there are good days as well as difficult days for us as caregivers. Some days life moves along with very few minor bumps in the road. But then there are those other days when we just want to give up. I have had both, and I’m sure you have also.

The goal of this blog is to encourage and support you as you care for someone with Parkinson’s Disease or some other degenerative or chronic disease.

This morning I found this image in my archive. Please take a moment to read each box. Think about your experience with each one.

Here are my thoughts:

#1 Some of our loved ones are prone to apathy. Let’s try to keep them involved in some hobby or activity that keeps them engaged. This can be a huge challenge for some, but it is worth the effort.

#2 A positive spirit every morning was helpful for us. Instead of watching the news in the morning, which can be very negative, I tried playing some favorite peppy music to get us going on a positive note. (pun intended here)

#3 How many times have we had to change our plans due to a bathroom accident just as we were headed out the door? We have also had to change course when hubby just didn’t want to go to something I had planned. Has that happened at your house? Most plans can be altered at the last minute if that is best for our loved one.

#4 The Serenity Prayer comes to mind with this one. Think about it! Pray it.

#5 True confession – I did not always respond in a loving and patient way with Carlton. Only a perfect person could do that, and neither of us is perfect. So, when our reaction is less than stellar, we can apologize and attempt to do better next time.

#6 With degenerative diseases, often the progression is cane to walker to wheelchair to bed. We just keep adapting. It is how we roll, so let’s roll with grace! (another pun?)

#7 Carlton is the best example of this. The last day words he spoke with meaning will stay with me for the rest of my life. He was famous for one-liner jokes. And his last word was “donut” in response to a joke. He smiled as he said it. Let’s help our loved one keep their great personality even to the end. These make great memories. As an aside, I realize that many lose the cognitive ability to reason and think clearly due to dementia. This is not preventable. We just adapt. Right?

#8 To those in the early stages of PD, this one is so true. Keep moving. The longer you move, the longer you will be ABLE to move. Don’t stop yet!

#9 Even when you can only move a little, , , , MOVE A LITTLE!

#10 It is important to keep our minds active as long as we can. Let’s do all we can to keep curiosity and creativity active.

If I had created this image, I would have changed #10 to read, “Don’t be afraid to ask for help when you need it.” Please reach out when you need help.

Thanks for reading and commenting. I am praying for God to give you.

Do We Need a DNR?

Disclaimer – I am not a medical professional, nor do I pretend to know the answers to all of life’s questions. I am, however, someone who has faced these decisions while caring for my husband who had Parkinson’s Disease for 20+ years.

The topic today is especially medical, so I want to be clear that I am sharing with you how we tackled this question. Each of you must decide how to answer it for your family and your loved ones.

The article that prompted this discussion was on Dailycaring.com, and I have linked it here. They do a great job of defining terms that are sometimes confusing, so please take time to peruse the article.

Our experience with this question began about 5 years before Carlton passed, which is when we visited our attorney to be sure our paperwork was up-to-date. We had created wills about 10 years prior, but as his cognitive condition was worsening, we wanted to be sure everything was in order.

As we went over the paperwork, our attorney told us we needed to make a decision on whether or not to have a DNR. At that time, Carlton chose to NOT have a DNR. He was a little confused with the wording of the document, but he was not ready to say “do not resuscitate.”

Three years went by, and we entered Hospice care in our home. One of the first things they asked was if he had a DNR, so we gave them the paperwork. After a year as his health continued to decline, the Hospice staff began talking to me about end-of-life issues. They wanted to be sure we had our final plans made, so they asked about the DNR.

They noticed that Carlton had declined a DNR. That means that he gives medical staff permission to do CPR on him, should he need it. So, our nurse, whom he liked and trusted, talked with him about what CPR would mean for him. At this point, his weight had changed from his normal 200 pounds to around 140 due to the decline in his health. His ribs were showing! She explained that CPR would likely break most of his ribs, and that would be very painful. He would have to be given pain medication for an extended period until they healed, if they healed.

He was very confused and refused to change anything, even after she explained that. I felt that he needed a DNR at this stage because he was so weak and thin, and I knew that breaking his ribs would only prolong his life for a short time while at the same time cause him to be in pain. So, I called his niece who is an attorney, and she came to the house to help me talk with him. His brother came as well, and we tearfully explained to him one more time that his quality of life was more important to us than the number of days he lived. We did not want him to be in pain, which would be the result of CPR on his body. Those were difficult discussions to have, but through those tears we expressed our love for him, and looking back, that time was precious.

He finally gave consent for a DNR, and we, his family, were relieved.

I cannot tell you what to do about this, but I can tell you that I learned several things about DNRs and CPR during this process.

• First, our opinion about a DNR changed as the disease progressed.
• Second, CPR doesn’t always happen as it is portrayed on television. They don’t talk about the ribs that are cracked or broken.
• Third, talking about these things may be uncomfortable, but it is necessary, and it may need to happen more than once in a lifetime. Tears may be shed, but when love is shown, it is productive.

Thanks for reading and commenting, and I pray that God will give you wisdom as you and your family have these discussions.

The Fine Line

As caregivers, we know that we walk a fine line most of the time. We are constantly making decisions between 2 things, some of which are consequential, and others that are trivial. And at times it is exhausting!

We must decide:

•           How much to assist our loved one. Should we let them dress themselves, even though it will take 10 times as long as when we help? And even then, we may have to re-button their shirt, or put up with their pants being on backwards.
•           Whether or not to get their drink for them. Should we let them get it because they can, even though it will take 10 times as long, and if they spill it while pouring (which they will likely do) we will have to clean it up? And what about when they set the cup down on the table, but when they don’t get it fully on the table, and it spills and we have to clean it up?
•           How much to contradict them at the doctor’s office when the doctor says, “Have you fallen much lately?” and our loved one replies, “No, not really.” But we know they are falling 2-3 times a day, or 2-3 times a week. Do we tell the doctor the whole truth?
•           If we should just make most of the decisions about our household, or discuss everything with them as we used to do. As the cognition of our loved one declines, so does their ability to reason and make decisions. Their tendency to worry may also increase, so withholding some of the difficulties of life will reduce their distress and anxiety about family and world situations.

And these are just a few of the scenarios that come up daily as a caregiver. The good news is that there is no right or wrong in our choices. We each must do what we feel is the best course of action for our loved one, for our family, and most of all, for our sanity. Sometimes we must decide on the spot, instantaneously. But when we have the luxury of time to think it through, we can always ask a friend for advice. Fellow caregivers make great sounding boards. Sometimes just talking through a situation out loud gives us clarity.

We walk a fine line in so many areas, and we must constantly make decisions for ourselves and our loved one. This is one reason why taking time for ourselves is so important. Simply spending a few minutes in meditation, in prayer, in stillness, in the quiet, might help clear our minds as we make important decisions.  It might give us a better perspective on the situation and make clear our next move.

Thanks for reading and commenting, and thanks to those who commented on the proposed book title last week. More on that soon.

God bless you all and have a great week ahead.

Let It Go!

From childhood we have learned that some things are absolutely important to do every day. Right? Like brushing your teeth every night before bed. Like making your bed when you get up. Like going to the dentist every 6 months for a cleaning. Like eating healthy food.

And none of us would want to trivialize any of those good habits. They have been ingrained in us for our entire lives! Let’s give thanks for those who taught us those healthy daily habits.

However

There may come a time in our lives when these are less important. We may find that happiness, contentment, enjoyment, and even just calmness are more important. Here is what I mean.

Many Parkinson’s patients experience a cognitive decline as the disease progresses, and as their ability to reason decreases, their tendency to desire healthy living may also decrease. Obviously, this includes those without Parkinson’s who exhibit signs of dementia or Alzheimer’s Disease as well.

With this cognitive decline comes a lack of ability to reason or choose wisely. Sadly, this means that caregivers like us begin to move into a role that resembles a parent, and many times we are accused of nagging.

We have now entered the stage of the disease where we must decide which habits we can just “let go.” About 6 months before Carlton passed away, he was under Hospice care, not walking on his own, barely standing to be transferred, very weak and down about 60 pounds from his normal weight. But he said to me one morning, “When is my next dentist appointment? It’s about time for a cleaning, isn’t it?”

Well, yes it was past time. But I had canceled the appointment because he was so weak. He could never have held open his mouth long enough to have his teeth clean, and the effort it would take just to get him there would not have been worth the benefit. (I did not convey any of that to him, however.)

I made up a story, telling him the appointment was several months ahead due to rescheduling. It was easier to NOT tell him that we were just going to let that healthy habit go. But I made that decision unilaterally.

Other caregivers have expressed to me that they have done similarly with actual trips that had been planned. But near the time of departure, they had realized that the time for that type of thing had passed. Staying home was not only easier but best for everyone involved.

At one point during our 18-month Hospice time, our sweet nurse told me to let Carlton have anything he wanted to eat and drink. I had been constantly telling him to not drink sweet tea, but instead drink water. She told me that prodding him to eat or drink one thing or another wasn’t going to add days to his life. And it was annoying him. This reminds me of something Carlton used to say often.

My point today is that there are some things we must let go of in favor of peace, calm, and contentment. Like going to the dentist for a check-up when he/she is in late-stage Parkinson’s. That is not necessary. Like making yourselves go on an extended trip when you know it will be more work than pleasure.

When it is time for us to make these decisions, let’s pray for wisdom, let’s seek advice from other caregivers and family, and let’s be decisive, never looking back. “Let it go!”

Blessings on you and your family today. Thank you for reading and commenting!

P.S. Book update – I have signed the contract with the publisher, and I’m waiting for the first round of edits to begin. This is so exciting! What do you think of this title- “Parkinson’s Caregivers – Yes, there is HOPE!”

DON’T Say THIS to a Caregiver!

It is no secret that sometimes our friends, even our closest friends, just don’t know what to say to make us feel better.  The truth is that there aren’t many things one can say to make caregiving easier. There are no platitudes, no cliches, no magic words, no secret coded phrases that will make it easier to care for our loved ones.

So, sometimes our friends say things that they HOPE will help. They really have good intentions most of the time. But sometimes we say things that aren’t practical or helpful, without realizing it. Here is a short list of what NOT to say to a caregiver and why.

“The days will go by so quickly.” No, they don’t, and the nights are even longer.

“He/She will be so thankful for all you do for them. They will thank you over and over again.” This is not necessarily true, especially if there is loss of cognition. In fact, when your loved one DOES thank you, write it down and mark that day because it may not happen again! Be thankful for all positive comments from them.

“We’ll be right here with you to help you,” says our friend. That is a nice sentiment, and they probably mean well, but when it comes to the most personal care we give, we end up doing it alone 99% of the time. While we would ask a CNA to help with personal clean-up, we wouldn’t ask that of a social friend. And the CNA will not be there during most times when things get messy.

“You should rest/sleep every time they do, just like when you have a young baby.” That also sounds good, but there are 2 problems with that. First, while our loved one sleeps, sometimes all we can think about is how much there is to do around the house. Second, just when we finally nod off to nap, we hear them call our name. They need us or they want something. It is so hard to relax when we know it will likely be short-lived.

“Be sure to get out with your loved one often. It will help both of you!” That sounds good, but do our non-caregiver friends know how much work it takes to get them ready and into the car with all the extra things they need to take? Yes, we want to take them places, but it is a LOT of work. Yes, it is probably worth it most of the time, but I repeat – it is a LOT of work.

Now that you know what NOT to say, you’d probably like some replacements. What do we want to hear? Here are a few:

• “You’re doing a great job. Is there anything I can do to help?”
• “Can I just come by for a quick visit with you and your spouse? I promise to stay just a few minutes.”
• “I’m stopping by our favorite coffee shop. What can I bring for you and your spouse?”
• “Don’t give up. I cannot even imagine how hard it is, but you’re doing well. I’m so proud of you.”

We just need encouragement, not suggestions or solutions. Just support!

Thanks for reading, commenting, encouraging, and being a good friend.

What is Quality of Life?

Last week I advocated for quality of life versus quantity of years of life, but I never really defined that term – Quality of Life (QoL). And it could mean different things to different people, right?

It is important to note that there is no “correct” definition, which also implies that there is no “incorrect” definition. As we made end-of-life decisions for Carlton at our house, we kept several things in mind, which I have mentioned often. Our goals were to keep him comfortable, clean, and as content and calm as possible. (He would smile at the alliteration!)

But it also meant keeping ME from having to do more work and from having to learn new medical procedures and devices whenever possible. For instance, we decided on a Foley catheter during the final 18 months of his life to keep him from falling as he got up to hurry to the bathroom. That was something new for me to learn how to care for, and at first it was difficult to figure out. (YouTube videos were a big help!) But it kept him from falling so often and perhaps injuring himself.

We decided against a feeding tube for several reasons. He loved to eat food, even pureed food, and our mealtime together and with family was pleasurable for him. And I just hated the thought of having to learn to care for a new medical issue.  That was a difficult decision, but I am convinced that we made the correct choice for us. There are those who truly NEED the feeding tube, and they are thankful it is an option.

Perhaps a key to the definition of QoL is also retaining as many of the pleasurable activities of life for as long as possible. These can be as simple as listening to music, watching birds, enjoying a good meal, watching movies, feeling the softness of a favorite blanket or pillow, petting a dog or cat (live or stuffed), and being in the presence of loved ones.

So, as our loved one’s condition deteriorates, let’s do everything in our power to preserve their quality of life by surrounding them with enjoyable experiences. We may find that these things lift our spirits as well.

Quality of Life

In the 3.5 years of writing this blog, I have never specifically written on “quality of life” or QoL, until now. According to Google.com, quality of life means “the standard of health, comfort, and happiness experienced by an individual or group.” For Carlton and I, during his time with Parkinson’s Disease, our goal was to keep him as safe, comfortable, and content as possible. While reading a medical journal this week, I found this sentence that jumped off the page at me.

Parkinson’s disease (PD) is a progressive neurodegenerative disorder causing motor and nonmotor symptoms (NMS) that result in disability, loss of patient autonomy, and caregiver burden.

https://www.hindawi.com/journals/pd/2021/8871549/

No truer words were ever written about Parkinson’s Disease, in my opinion. The article attempts to prove that while the stage of PD is important to assess QoL, one must also add in the non-motor symptoms as factors. It can be assumed that QoL will decrease as one progresses in the stages of PD, but QoL will degenerate even more as additional non-motor symptoms become evident.

Non-motor symptoms cause most of the burden on the caregiver, and this article states that very truth. “Not only motor symptoms but also NMS increase in their severity and burden over time, increasing patients’ disability, with additional worsening of their QoL, as well as caregivers’ burden.”

Without getting lost in the weeds of the medical jargon, let’s talk about non-motor symptoms more specifically. Here is a list from my book:

• Sleeping too much or too little
• Difficulty Swallowing while Eating
• Changes in Smells (similar to COVID-19)
• Soft Speech
• Double Vision, Dry Eyes
• Dental Health, Dry mouth
• Constipation/Diarrhea
• Choking
• Anxiety – panic – depression
• Dysgraphia – tiny handwriting
• Both high and low blood pressure
• Apathy
• Stiffness
• Skin problems (extremely dry skin or extremely oily skin)
• General overall pain
• Sweating
• Drooling
• Sexual problems

Notice that none of these are connected to shaking, or mobility problems, which are the motor symptoms. But as we have experienced, each of these can cause extreme discomfort, inconvenience, and hence loss of Quality of Life.

Factors of Quality of Life

It was strangely comforting to read that physicians are realizing this fact, researching it, and writing about it. Throughout the article, they mention that as non-motor symptoms increase, so does the burden on the caregiver, and therefore on society. It is comforting to note that as caregivers, our burden, our task, and our role in caring for our loved ones, become greater as their non-motor symptoms increase and/or worsen.

There are 18 NMS in the list above. How many of these has your loved one experienced, either in the past or present? Not all patients experience all of them, and each experiences them at a different severity, depending on many factors. But if you have time, please leave a comment with the number your loved one has experienced, just for our unscientific poll.

So, take heart, caregiver friend. The medical community is beginning to realize our good work, and they are working on cures for all parts of PD every day. Have a great weekend, and I am praying for you all.

The Dreams on the Back Burner

As a caregiver, your time right now is not your own. I remember that time. I would sit down to do something I really enjoyed, get into it barely, and then hubby would call my name. He needed to go to the bathroom. My time for ME was over.

I would take a quiet moment to work on a puzzle, spend 5 or 6 minutes reacquainting myself with the picture, put in a few pieces, and then he would call my name again. This time he needed his drink refreshed. I had to stop doing what I loved in order to help him.

My time was not my own. Many of the desires and passions and pleasures we enjoy have been put on hold, no matter who we are caring for and no matter what their infirmity might be. We have put them on the BACK BURNER of our lives, for now.

But

This is not forever. This period of our lives will pass.

So, what do we do now? There are ways to keep those passions alive. There are ways to remember those things we love to do, but cannot do right now. We can make a plan. We can make a list. We can even create a “wish board” with pictures and symbols of all the things we want to do when we have time one day.

In my current situation, I have been privileged to move several things off the back burner of my life and onto the front burner! That includes my book about caregiving.

News Flash – – – I sent it to the publisher yesterday! The first draft is finished, and now the difficult part begins with the edits. More on that as I have news.

But here is my word to you today. Don’t give up on your dreams. Don’t stop doing the things that bring you joy, even if you can only do them a few minutes at a time. Don’t give up on wishing and hoping for the day you can spend hours at a time doing those things that feed your soul. Your day is coming. Don’t lose hope.

Thanks for reading, for commenting, and for all the difficult work you are doing now.

I am praying for you.

What? Another New Symptom?

What do we do when a new symptom or difficulty appears? There were so many that I stopped counting: dry eyes, drooling, double vision, lack of facial expression, softer speech, smaller handwriting, and the list goes on and on. Today I’d like to choose one and tell you how we handled it from the day it first appeared, and that is FAINTING.

It happened like this. Suddenly in year #16 of Parkinson’s, Carlton complained of being dizzy as he stood up from a seated position. It didn’t happen all the time, but it was occurring with increasing frequency. Soon after he mentioned it to me, he actually fainted after standing. Thankfully he was only out for a second or two, and he didn’t faint every time he stood, but he fainted enough times to cause concern for both of us.

We assumed it had something to do with blood pressure, but this was totally unexpected because he was being treated for HIGH blood pressure, not LOW blood pressure. After logging the dizziness and fainting for a few days, we decided to call his primary care doctor. That was step #1. She wanted to see us right away.

The first change she made was to take him off the medication that was lowering his BP, since that did not seem to be a problem any longer. Then she looked at all other medications that she had prescribed for him, and none of those seemed to be the cause, but she changed one medication just to be sure.

Her next suggestion was to monitor and log his BP at home over the next few weeks and give him as much salt as he would eat. We were already signed up for in-home healthcare, and when we shared this information with both the occupational and physical therapists, they had 2 other suggestions.

• They told him to stand still for several seconds after he stood, and before walking.
• They also suggested that as he stood, he might move his toes and bend his knees slightly to get the blood flowing.

Those suggestions seemed to help somewhat. However, he was usually standing to hurry to the bathroom, so waiting before walking was not practical. One of the most disturbing parts of this was that from a practical standpoint, this tendency to faint meant that someone had to be there with him as he stood each time. That was not always possible, but we tried to accommodate him.

Our last step was to visit his neurologist. He told us that due to better drugs for Parkinson’s, patients are living longer, and he was seeing this tendency to become dizzy in his long-standing patients. He said this was likely “orthostatic hypotension” which could be caused by Parkinson’s itself or a side-effect of taking C/L for a long time. From that time on, his neurologist always took his blood pressure while he was lying down, then while sitting up, then after standing. He also added the drug Midodrine. It took a few changes to get the dosage correct, but it did keep the orthostatic hypotension in check until the very end of his life.

This is just one example of new symptoms cropping up, logging the symptoms, sharing the information with our doctors, and then finding the best medication to control the problem.

I hope whatever new symptom you see next, you will be encouraged to follow this investigative procedure to control the situation. This story and more are found in my new book, so I hope you will read it and share it. It is almost finished, and I hope to send it off to the publisher for edits this next week!

Thanks for reading and commenting. I’m praying for you and your loved one this week.

It’s Official! I am an AUTHOR!

Some of you are thinking right now, “Why would a retired mathematics teacher want to write a book?” And your question is valid!

Others of you are thinking, “She is finished with caregiving. Why doesn’t she just forget about Parkinson’s and move on?” And your question is valid!

The answer to both questions is the same, and it is simple. I remember how it felt to care for my husband, and YOU are there right now. So, I am writing to give you hope. To help you through this stressful and challenging time. I am writing this book for the same reason I write this blog – to support and encourage you who care for a loved one with Parkinson’s Disease.

I follow several groups on FaceBook connected to Parkinson’s Disease, and many stories I read there are heartbreaking. Here are a few:

“My husband was diagnosed with Parkinson’s Disease last week. I don’t know what to do next! HELP!”

Or

“I can’t do this anymore. I can’t watch my wife become less and less of a person with Parkinson’s Disease. I’m DONE!”

Or

“What do I do about my father with Parkinson’s? He has had 3 traffic accidents in the last month, but he won’t give up driving? I am so tired of fighting with him over this.”

Or

“My mother has Parkinson’s Disease, and I can’t care for her anymore. I sit here crying as I write this because we had to put her in a nursing home today.”

The stories are endless. The heartbreak is endless.  Caregivers need to know that they are not alone. They need to feel the support and encouragement from someone who has been there and come through on the other side. That’s why I am writing. For you and for them.

The working title for my book is “Hope for the Caregiver”, and it is nearly finished. My goal is to have it ready to send to the publisher in the next 2 weeks, so I am working hard to accomplish that.

Here is a quick peek at the content:

•           Chapter one – what to do with a diagnosis of a degenerative disease
•           Chapter two – now that you have it, how can you live with it?
•           Chapter three – moving into the advanced stage and coping with it
•           Chapter four – is Hospice right for us?
•           Chapter five – the final stage of life and the immediate aftermath

This book is for every caregiver. It is filled with hope and the assurance that we each need a support group of family, friends, and faith to survive and even thrive during this stressful time.

Yes, I hear your next questions, “When can we see the book? And what can we do to help?”

Even though I cannot answer the “when” question right now, I can think of a few things you can do to help.

In the next few weeks, I will be launching my website about the book, and I will need people to follow me there and on Instagram to help with getting out the word about the book. Watch for a blog post about that soon.

And prayer is the best thing to do as I edit and edit and edit some more! I will update you every time there is new information.

Thanks for your support and encouragement along the way. Can you think of a friend who might need this book? I am praying even now that the book will find its way to those who will find HOPE from reading it.

Have a great week and thank you for reading and commenting.

How to Survive without Really Trying

This past week was an anniversary of sorts for me. It has been one year since my husband passed from this earth into Heaven. For one year I have had to mark “Widow” on all applications or surveys. That really stunned me the first time I had to do that.

When we are in the middle of caregiving, we don’t always think ahead to how it’s going to be when we are NOT caregiving anymore. And that is understandable. We have too much to do to care for our loved ones to be thinking about that!

Well, here is how last year went for me. The funeral was wonderful. It was exactly as Carlton would have wanted it. And for that, I am very thankful. It was nice to have family around for a short time.

When they left and things settled down to just me at home, there were things that were very much the same, and yet there were things that were very different.

The sameness came with all the things I had been doing already because Carlton had been unable to help with anything for the last year. I still had to take out the trash, pay the bills, make decisions, and feed the cat, just as I had done previously. My house was the same, so I didn’t have to get used to a new living situation.

One difference is that it is quiet. Oh, so quiet. There is no one calling to me to come to help them, no one made any noise except me and the cat! I had to get used to that and realize that I could play music (as loudly as I wanted), or leave the television on all day, or not! My choice! That is really nice.

Another difference is that I can come and go as I please. I don’t have to ask if he wants to go with me or say how long I will be gone. I can even change my mind while out if I decide to stay longer. That is a real blessing. It does have a downside, however. No one checks on me unless I call a friend or family member to tell them where I am going.

They say that the first year after a death of a family member is the most difficult. So, you might ask how I made it through all the holidays, including our 49^th wedding anniversary. The answer is simple.

I survived just like you are surviving while caregiving. One day at a time. One moment at a time. One foot after another. One breath after another. You are living life right now by showing good care to your loved one. You are doing the hard work to show love. Keep on doing that, my friend. You will have no regrets. You are doing well.

You are surviving where you are right now. However, the day is coming when your caregiving period is over, and the new days will be brighter. My prayer for you this week is that your load will be lighter, and that God will give you peace in the middle of caregiving.

Thanks for reading and commenting. Next week – news on my book!

MOBILITY SOLUTIONS #2

Fixing Falling

This answer is simple – you can’t. I could just stop there, and you would be disappointed, but you would probably understand. Parkinson’s patients are going to fall. It is inevitable. But we can unpack this topic somewhat, and perhaps we can find some ways to prevent a few of the falls.

As I think back through our Parkinson’s journey, here are some reasons why my husband fell. Sometimes he leaned forward as he walked, getting off-balance, and his center of gravity moved out in front of his body. That caused him to fall forward. In last week’s post we named this “festination.” The only solution I found to that was to slow him down and stop him, allowing him to rock back onto his heels and bring that center of gravity back to horizontal. But he could never do that by himself. It took an outside force – ME!

Another cause of falling might surprise you. Sometimes he was standing still, and he just fell! Has that ever happened to your loved one? Isn’t that a strange thing? My theory is that when that happened to Carlton, it was because he did not shift his weight to one foot before stepping out with the other foot. (I believe this is part of executive functioning – something most of us do without even thinking.) The falling while standing still might be prevented if our loved one would hold onto something, but in our house, it happened most often in front of the refrigerator. Carlton seemed to want to carry something, but he couldn’t do that while walking.

But the biggest cause of falling in our house was when my husband was trying to get to the bathroom quickly. His feet just wouldn’t cooperate, and he fell forward – face first. We were so thankful that he never injured himself on any of those falls, other than the occasional scrape.

However, falling is not advisable! It can lead to broken bones, and a broken bone brings inconvenience and pain for everyone. So, we want to minimize the falling!

This means we might have to introduce devices to help with walking, which is not news to any of you. Some people begin with a tall walking stick. There are fun shapes available which make them seem less “medical”. Canes can even seem more fun when we paint or decorate them, and the ones with animal toppers can be conversation starters!

We can even make walkers interesting and entertaining by decorating them and making them colorful. The ones with seats and storage compartments are very handy when we need to wait in line somewhere.

Two reasons we sometimes opted for a wheelchair were that we could get places faster, and Carlton was not tired from walking when we arrived. When family members were around, they enjoyed helping to push him which was a huge help to me.

The last thing I want to mention is how to get our loved one up after a fall. It is important to have a gait belt if falls occur often in your home. Check out this link to see the kind we had. It worked well. You can also call for help from the fire department. They use the term “Lift and Assist” to help patients who have fallen. You can call 911 or any number you have for non-emergency help. It is usually free, but you may have to wait until they are available to come.

The bottom line is that falling can be dangerous, so we want to avoid falls as much as possible. However, they are inevitable with advanced Parkinson’s patients. We just work to make them as painless and less frequent as possible.

Thanks for reading and have a fall-free week ahead!

MOBILITY SOLUTIONS #1

Fixing Freezing and Festination

Last week we decided our biggest problem for people with Parkinson’s Disease was mobility, specifically freezing, falling, and festination. Today we need solutions!

PROBLEM #1 – Festination

          This is the tendency to walk on the balls of the feet which causes the steps to gradually become shorter. Eventually, our loved one is leaning forward to the extent that they get off-balance and fall.

SOLUTION –

          As this happens, help your loved one come to a complete stop. Regain balance. When ready, say, “Heel, toe, heel, toe,” and tell them to begin walking on “heel” by placing the heel down first. One alternative would be to count, putting the heel down on every odd number. The key is to come to a complete stop first, then begin with the heel.

PROBLEM #2 – Freezing

          This problem seems to be unique to Parkinson’s patients, and it is coming to a stop and not being able to resume walking right away. This sometimes happens suddenly with no apparent cause, but it happens more often when coming to a doorway or a turn in the path. It also occurs when our loved one is trying to hurry.

SOLUTION –

          For my husband, this happened while walking down the hallway in our home. He noticed that it was easier when he was somewhere in public where the carpet had a pattern. He just followed the pattern. Since our carpet was solid, we put duct tape on the floor in a pattern to help him have something to follow. That helped for a time.

          In public when there is no pattern, here are a few coping strategies:

1. Count together. You can even decide which # to move on. “Let’s walk on 5. Now count, “1, 2, 3, 4, 5, walk”. Sometimes this worked for us.
2. Sing a favorite marching type song. That gets their mind off the pressure of walking. But it doesn’t always help them move their feet. If you can get them to march in place, chances are great that you can get them to move forward.
3. Pretend the threshold is a stick or a snake and exaggerate the movement of stepping over it by raising your leg high.
4. Try touching the leg of your loved one and saying, “Pick up this leg first.” That touch sometimes helps make the connection in the brain.
5. Gently pull your loved one to help them lean in one direction, shifting their weight to that leg so they can step with the other leg. That seems to get them off “dead center.”

There is no QUICK FIX that works every time for either of these issues. Instead, these are coping strategies that work sometimes. But even these need to be adapted and altered to fit each of our situations. Please share in the comments or direct email and tell us what works for you and your loved one. Thank you for reading and commenting, and have a great week ahead.

cherylcaregiver71@gmail.com

Is Falling a Problem?

Or maybe stumbling or shuffling? At our house, all 3 were problems at one time or another. But falling is probably the most dangerous. It is truly a miracle that my husband never broke a bone in all those many falls.

Falling, Falling, Falling

Looking back after Carlton was diagnosed, we remembered something that had been happening for several years. Many times when he stood up, he would stumble to catch his balance. He used to say, “Did you feel the house move just now?” But of course, it hadn’t.

And then there is a problem with freezing, especially when our loved one gets to a doorway. Is that a problem at your house as well?

Did you know that “leaning” is also associated with Parkinson’s? At first, it is funny, then it is just a nuisance, but it can be a hazard when our loved one literally falls over because of it!

Are you seeing a pattern here? What if we were to add a few lesser-known conditions like festination, dyskinesia, and dystonia? What do all these issues have in common?

Together they make up the category of MOBILITY! This is a huge problem for Parkinson’s patients, as you well know. And when something robs us of our mobility, it causes us to be dependent on something or someone else, creating huge problems in life.

But I am preaching to the choir here. You already know this, don’t you? And you have experienced several of these things, no matter how long your loved one has had Parkinson’s or some other condition.

So, what do we do about this? How can we help our loved ones? Is there any hope? (So many questions!)

Well, the best answer in the world is YES, there is hope.

Yes, there are strategies that can help us! Yes, others have paved the way before us and invented devices to help us, and research and development are still happening today to give us even more hope.

Let’s talk about strategies and accommodations to help with mobility next week. While I do my homework to gather resources for you, here is some homework for you:

1. Check out those links on festination, dyskinesia, and dystonia. Does your loved one experience any of them?
2. In the comment section, tell me what other mobility problem you are seeing at your house, and I’ll address that as well.

Thank you so much for reading and commenting. I look forward to sharing “Help and Hope” with you next week.

One-Liners

My husband, Carlton, was the king of one-liners. He would listen to a conversation between 2 people, and it would seem as if he wasn’t really listening. But then, suddenly, he would interject a pithy statement, a one-liner, that really caused everyone to pause and take notice. He was a deep thinker, and his singular statements prodded those around him to also think deeply.

I love reading that kind of statement because that shows that the speaker is tracking the conversation and can formulate the words to cause ME to think past the surface, deeper than the superficial.

Sometimes I take those weighty statements and make them my home screen on my computer for a while, and every time I read it I think of the speaker, or I smile with a memory.

Today I leave you with 3 such statements that have been important to me lately. In the comments, please let me know which one resonates with you (#1, #2, or #3), and if you have a new one for me, please share it!

Thanks for reading and commenting, and have a great week ahead.

Number One

Number Two

Number Three

HOPE after Darkness

Today is Saturday before Easter. If we place ourselves back in time, we realize that Jesus is dead, and the disciples are devastated. What should they do now? Jesus was their hope, their Savior. Yet, He was dead. Some call this day, “Silent Saturday” because God in Heaven was silent.

However, we know from history that Jesus rose from the dead on Easter morning! Hallelujah! When the disciples heard this, they passed the news by greeting each other with “HE IS RISEN!”, and the response came back, “HE IS RISEN INDEED!”

Before my husband passed into Heaven, there were days when I felt I was in a silent period of my life. Here is a partial reprint from 2/2/2019:

Being totally honest here, there are moments in my day when life is dark.  Within one 24-hour period my husband can go from walking across the room without any aid to not being able to lift his fork to eat. Totally independent to totally dependent, with the entire spectrum in between – all in a day.  Many of you have experienced the same phenomena.

Because of this, there are times when I feel that the weight of the household is really on me now. Do you feel that way? We used to be partners in life, and in the pure sense of the word, we still are. But in reality, it is all up to me now. I used to rely on him to physically help with things around the house and to give me moral support and comfort. But Parkinson’s has changed all of that. He just cannot do those things physically, mentally, or emotionally. I believe it takes everything he has to just make it through another day. There is nothing left to contribute to our household or to me.

There are times when the weight of this feels like it will suffocate me like I cannot possibly do it all. In those dark moments, I feel totally alone.

But those moments are few and brief. It seems that just as I feel that the situation is hopeless and I am bearing the weight of the world on my shoulders, God gives me a wink. As I type this, it is early morning, and I look out the window at the sky above the roof to see a beautiful cloud formation with gorgeous colors, and it makes me smile. Then a male cardinal lands on the roof of the patio, just at the edge of my vision. He is beautiful – bright red against a colorful sky. And I realize how blessed I am. God is with me.

My friend, God was with me even during that “Silent Saturday” period of my life, just as God is with us today. So, tomorrow, on Easter morning, let us all thank God for being with us and for His power over death.

Because Jesus lives, we will live also. Death cannot hold us when we place our trust in the God who gives life! Hallelujah, thanks be to God.

RAISE YOUR GAZE

Since tomorrow is Palm Sunday with the beauty of Spring everywhere we look, it is a perfect time to raise our gaze from the common to the sublime. From the bleakness of winter to the hope of Spring, let us gaze at God’s creation coming to life. We drink in this newness of life as hope that brings appreciation and thanks to God.

At this time of year my thoughts go to Psalm 121:1-8 which I learned as a child, here in the English Standard Version,

• I lift up my eyes to the hills. From where does my help come?
• My help comes from the LORD, who made heaven and earth.
• He will not let your foot be moved; he who keeps you will not slumber.
• Behold, he who keeps Israel will neither slumber nor sleep.
• The LORD is your keeper; the LORD is your shade on your right hand.
• The sun shall not strike you by day, nor the moon by night.
• The LORD will keep you from all evil; he will keep your life.
• The LORD will keep your going out and your coming in from this time forth and forevermore.

That Psalm brings me such comfort today, just as it did while caring for my husband. I am especially thankful that God does not sleep, and in the middle of the night when Carlton woke me for the 3^rd time for help, it was comforting to know that God was also awake and that He heard my desperate prayers.  To make this Psalm even more personal, I offer you an altered version today:

• I will lift up my eyes to the heavens from whence come beauty and wonder,
• Because otherwise my mind and heart become bogged down with sickness and despair due to Parkinson’s Disease and the thoughts of an uncertain future.
• As I gaze at God’s creation, my heart begins to soften and my thoughts morph from the weariness of the duties of a caregiver into the joy of a thankful heart
• From thoughts of death to the beauty of life,
• From being consumed with worry to feelings of calm.
• My heart overflows with thanks to Him for friends and family, without whom I would not make it,
• And I thank Him for Hope for tomorrow and Peace for today.

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

I AM ENOUGH

Sometimes while caring for someone with a degenerative disease, we have occasion to doubt ourselves. To think we are the wrong person for the job. To think God must have made a mistake – surely someone else could do better. After all, we are so imperfect.

Our loved one is not getting better. (We knew they wouldn’t, but somehow, we expected them to improve since we are giving such good care!) And there are times when they do seem better. They will have good days interspersed between the bad days. It really doesn’t help that it seems we are on a roller coaster!

When a new symptom appears, we are tempted to cry, “Great! One more thing I get to do. Something new to worry about. Don’t I have enough symptoms on my plate to try to mitigate?” And there will be more symptoms soon, and after that – more symptoms. That’s the way of a degenerative disease.

And just when we think we have reached an even keel with one symptom, it flairs back up again. The most annoying problem for us during Parkinson’s was the constipation/diarrhea rollercoaster. As soon as we overcame constipation, it seemed like Carlton would have one good day, and then diarrhea hit. It was a constant pendulum swing. This was his Achilles Heel, so it seemed.

Others may find falling to be a problem. And once you have removed all obstacles, found good shoes for them to wear, placed the walker or cane close by, they might go a day or 2 with no falls, and then they fall and break a bone, causing more problems for everyone.

As caregivers we doubt ourselves and think, is this my fault? Did I leave him alone too long? Did I leave that box in the way that he tripped over? Did I forget to remind him to use the walker? I must be a bad caregiver.

Self-doubt creeps into our minds, and the questioning begins all over. Instead of listening to those negative voices, it helps to ask ourselves just one simple question: did I do everything in MY power to help him/her?

If the answer is yes, we must push every negative thought away and remember that we are enough. We have done all we could in each situation. We are not perfect, we are not medically trained, and we are not super-human. We did the best we could. We are enough.

Let’s hold our heads up high and be proud of the work we have done to help our loved ones. We have sacrificed our time and our future, and we are giving all we have.

We are enough! God has equipped us with the strength and determination to care for our loved ones, and let’s keep the self-doubt away. Let’s replace those negative thoughts with thankfulness to God for His help in every situation, every day, and every obstacle we face.

Thanks for reading and commenting. Feel free to email me if I can help you in any way.

cherylcaregiver71@gmail.com

LAST DAY for HANDOUTS!

Email me at cherylcaregiver71@gmail.com for the 3 handouts I have been offering this month. The first 2 are handy, printable pages to help keep track of medications and doctor visits. The 3rd is filled with web links to help with mobility, eating, cognition, and more! There are only 24 hours left!

Thanks for reading and emailing!

End of Birthday Month: LET IT GO!

At the end of 3 wonderful years of blogging, I am so thankful for the art of writing. It helped me get through the most difficult of times. Some of you have asked what else I wrote. I kept a journal in which I wrote every time Carlton developed a new symptom. The main goal was to have a record of when the problem began so I could tell the doctor. And I did refer to it often to remind myself how long a certain condition had been going on. There was nothing formal about this, just a running dialogue with myself on the computer. I put it in the same folder as the record of his medications.

Sometimes I wrote when I was angry at having to repeat myself 3 or 4 times in a day. Or when I had to clean up the bathroom floor for the 2^nd time in a day. I also wrote on days and nights when I asked God, “How long?” Parkinson’s can feel like forever, can’t it? But, I mostly wrote to remember. Maybe you have considered writing. If so, I recommend it.

Each time I wrote in frustration, there was a sense of letting it go. Letting go of the anger, the bitterness, the guilt for feeling that way. And letting go is healthy. It’s even in the Bible. Paul said, “Forgetting those things which are behind and reaching forward to those things which are ahead, ¹⁴ I press toward the goal for the prize of the upward call of God in Christ Jesus.” Phil. 3:13 – 14.

Let go and reach forward because it is healthy for each of us to think about the future. One of the best things I did while Carlton was sick was make a list of what I wanted to do someday. First, I made a list of what I would change about our house. I tried to prioritize the list, putting the most pressing thing first, etc. Then I made a casual bucket list of things I wanted to do someday. We all need something to look forward to, something to give us hope for a better future.

To those who wrote asking for last week’s handout, please forgive me. It will be to you this weekend. And to everyone, all handouts are available until March 31^st. So, please email me if you’d like any or all. They are described in the other blog posts from this month.

Thanks for reading and commenting. I’m praying this prayer for you:

Oh No! Another Symptom?

Sometimes it seems that every day with Parkinson’s Disease brings a new symptom – falling, choking, skin problems, bathroom problems, cognitive decline. And the list goes on! Feeling overwhelmed by all of this? I did. Whether we have been on this Parkinson’s journey 25 days or 25 years, it can become all-consuming. When each new symptom appears, we may find ourselves asking the same 3 questions:

First question – Is this new difficulty caused by Parkinson’s? (I asked this every time some new symptom appeared.) The answer is “maybe yes, but maybe no”. But does it really matter in the long run? It is still a problem, and we need to solve it. So, we research, we ask friends for their solutions, and we try to fix it ourselves.

Second question – If we cannot solve or eradicate this symptom, is this our new normal? I expected this to be true every time, and sometimes it might be, but some issues solve themselves or go away with a simple fix. However, if our efforts to get rid of this problem are fruitless, we decide what steps we need to take to live with it. (If you can’t beat it, join it?)

And that leads us to the third question – Does this mean we are in a different stage or level of Parkinson’s? And should we be worried? (I cannot tell you how many times I asked this question.) The answer is 2-pronged. First, our doctor needs to know about each new development, especially after we have tried all known remedies and they haven’t worked. He will know if this new issue is dangerous if allowed to continue and if there are other possible solutions. To the question of stages and levels of the disease, I have found that doctors are hesitant to talk about this. Perhaps it is because PD is obviously a degenerative and progressive disease, so we expect our loved one’s health to decline more rapidly than normal. And no matter the stage, our goal is still to keep them calm and clean and comfortable. That never changes.

This can be quite overwhelming for caregivers with no medical training like most of us. The pressure of handling everything can be daunting, and as our loved one becomes increasingly dependent, the weight of the household falls squarely on our shoulders with greater intensity.

However, there is hope, my friend. This is the best time for us to lean on those around us in our inner circle of family, friends, our support group, and our faith community. If there has ever been a time when we needed them, it is now. They are our best source of encouragement and support.

Besides these people, the internet is a vast source of information and solutions to some of these problems. My gift to you this week is a list of online resources to help with several of the problems that our typical of Parkinson’s. I hope you find them useful. Just email me at cherylcaregiver71@gmail.com for your copy.

As always, thanks for reading and emailing. I’m praying for you.

Medication Time!

Two important things before we begin today’s post:

My goal is to support and encourage those who care for someone with Parkinson’s Disease or some other chronic or degenerative disease.

And

Disclaimer – I am not a medical professional, nor do I play one on television. I have absolutely no medical training and do not desire to give any medical advice.

But I do know something about administering medications after having done this for my husband for 20+ years.  

First, it is of utmost importance that Parkinson’s meds be taken on time. Their effectiveness is timed, and when that runs out, it is almost as if someone turned the switch to “off”. The window of the viability of the popular PD drug, Carbidopa/Levodopa (C/L), is narrow, and it changes as the disease progresses. Every time we notice that our loved one’s meds wear off before time to take the next dose, we need to inform the doctor so they can change the dosage or timing. This may happen often immediately after diagnosis as the doctor gauges your loved one’s response to the C/L. Then it will likely settle for a while when it feels as if you are on a plateau. Suddenly things will change which will indicate a need for a change in dosage. Don’t be alarmed at this.

One more thing about timing. This is foreign to many staff members in the hospital. So, if your loved one must go to the hospital, you will need to advocate for this.

Second, it is possible that swallowing will become more difficult as PD progresses. There are several things that can help your loved one take medications easier. Applesauce and yogurt work quite well. We needed to use applesauce for the last 6-8 years of hubby’s life because he had difficulty swallowing. We also purchased a small mortar and pestle so I could grind up any tablets that hubby needed to take. Many tasted bitter when ground into a powder, so pouring the powder into applesauce or yogurt helped the taste and allowed him to swallow them easier. Capsules can be pulled apart and the contents poured into the applesauce as well.

One other reason caregivers switch to applesauce or yogurt is that it moves the task of taking pills from the patient to the caregiver. This might be necessary if your loved one forgets to take their pills or gives any other indication that they might not always be taking their pills on time. It adds another task to our day, but it could be a good solution when your loved one needs that assistance.  If they are resistant, we can always say that this is a new way to take pills, and it takes 2 people to accomplish it.

A small plastic container filled with organic cinnamon applesauce and a spoon inserted into the food on a white tablecloth.

I hope these 2 things helped explain or clarify taking C/L or any other critical medication.

Thank you for reading and commenting. I truly appreciate each of you. Next week is the 3-year anniversary of this blog! There are some exciting things happening here in March, which I’ll share with you soon. Stay tuned!

The Boy, the Mole, the Fox, and the Horse

A few weeks ago, I mentioned a book I discovered, “The Boy, the mole, the fox, and the Horse”, by Charlie Mackesy. I showed you an image from the book, and I told you I had ordered it. It finally arrived, and I wanted to tell you more about it. Several of you mentioned to me that you looked over the free pages on Amazon.com, and some of you ordered it. I hope it brings you as much joy as it has me, already.

Here it is, to refresh your memory, along with a photograph of the author:

The premise of the book is that a small boy begins a journey and picks up the 3 animals on the way. Each character is unique, which is an important point. Each has a different skill set – a wonderful life lesson to learn. And each has wisdom to impart to the others – also true in real life. The lessons are understated in such a way that you cannot help but discover them, which is a sneaky way to give a sermon without actually preaching.

I don’t have a favorite part of the book because each time I read it I notice a new nugget of truth, and I find myself ruminating over that newly discovered jewel. The simplicity of the drawings and story totally enhance the lessons found within.

Here is one of my favorite drawings with a lesson that applies to everyone at various times in their life:

When I was caring for my husband, my struggles were just like yours. They were difficult, and occasionally I wanted to give up. Often I needed to remind myself that everyone struggles with something, not just caregivers. We have a tendency at times to say, “poor me”, whether in our thoughts or aloud. And just about the time I say those words, it seems that God places someone in my path whose situation is much worse than mine. I immediately change my inner thoughts to say, “Thank you, God, for MY struggles. I know how to handle my problems, and I wouldn’t want to have THEIRS!”

Don’t give up, my caregiver friends. This stage of your life is not forever. We have heard the saying, “This too shall pass.” And we know it is true. And each time we struggle with something, we can all remember that our struggles are temporary. So, we do not give in to despair.

Instead, we have hope. We have help. We have friends, family, and God who is with us in whatever struggle we’re facing.

Have a great week ahead, and I am praying for each of you, even if I do not know your name.

Let’s Write a Book

Good morning, friends,

Since we are writing a book about Parkinson’s, we will begin with the diagnosis. Would you like to give some input? I would love to hear about your experiences and your responses to these questions:

1. When you received the diagnosis, what was your first thought?
2. What was your first question either to the doctor, or to your spouse?
3. And what do you wish you knew THEN that you actually do know now?
4. What is one piece of advice you would give to a couple when one has just been diagnosed with Parkinson’s Disease?

Since my blog is going through a design renovation, you may find it difficult to locate the “comment” button. If so, please email the answers to these questions to hughesgctm@yahoo.com.Thanks so much for your help in this.

Here is a little taste of chapter one:

I wish I had gone with him to that doctor’s appointment. I should have gone with him, but we had no idea that the diagnosis would be Parkinson’s Disease. That was not even on our radar. His symptoms were not what we associated with Parkinson’s (PD). He didn’t really shake, and that’s all we really knew about PD.

His symptoms seemed random to us, and we never connected the dots and came up with a picture of PD. This is how it happened.

The first two things he noticed were that when he walked his left arm did not swing per usual and his steps were becoming shorter. He noticed these things because he took public transportation part way to work each day, and from the train station he walked about a fourth of a mile on a sidewalk. He noticed the length of his steps first because the sidewalk was composed of sections of concrete, all the same size. And at first, he walked about 4 steps in each section, but over the course of a few months, he noticed he was now taking almost 7 steps in each section of the sidewalk. We talked about it one night over dinner. A few weeks later he mentioned that his left arm didn’t swing. He could make it swing consciously for a few minutes, but as soon as his focus was on something else, his arm ceased to swing.

The final symptom that sent him to the doctor was an observation I made one day as I was walking behind him. From the back, he looked like someone who had just had a stroke. He was hugging his left arm to his body, and his left leg was dragging slightly. When I walked up beside him, I said, “You’re right. Something is wrong with your left side. You need to go to a doctor!”

But neither one of us connected these symptoms with Parkinson’s Disease. And we were not prepared for the way the doctor delivered the news. He was a general practitioner who had never seen Carlton before. After listening to Carlton describe his symptoms he said, “Sir, I don’t know you, but by your description and looking at your face, I can tell that you have Parkinson’s Disease.”

When we first heard the diagnosis, we were stunned, shocked, and almost horrified. However, we didn’t realize all that it meant. In some respects, we wished we had not gotten a diagnosis, because it did change the way we were thinking. But not knowing would not have helped the situation. Having a name for the condition allowed us to focus on helping my husband. That was a good thing.

Does that remind you of when you and your loved one received the diagnosis of Parkinson’s Disease, or of some other degenerative condition? If you know someone who has been newly diagnosed, please share this with them. We’ve come a long way since then, haven’t we? And we won’t give up now. The same family, friends, and faith in God that have brought us this far, are the ones who will be with us in the days to come.

I have so much more to share with you, my caregiver friends, but I will save some things for next week! Until then know these 2 things – I am praying for you, and God is with you every moment of every day. Have a great week ahead, and thanks for reading and commenting.

-Cheryl

We had a Moment

Paul and “his Cheryl” have a beautiful story, just like each of you!

Adjunct_Wizard

It was early afternoon. It was about an hour after she had taken a dose of meds. She was standing at the kitchen sink. Her dyskinesia was noticeable. Her conversation was anxious.

She was worried about what was going to happen with the occupational therapist … I think. I tried to convince her to sit and rest for a bit until we had to go there.

I went to putz in my office. Alexa was playing Rod Stewart old standards from his Great American Songbook album. Time after Time came on “… so lucky to be loving you” a waltz or foxtrot. I asked her if she wanted to dance. The song was a favorite of ours. I turned it up a bit and coaxed her into the space between the dining and living area. She put her arms up around me and I did the same. We hugged…

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