Do I Look Normal?

The idea for today’s post came from this article from Brain and Life. It is written in first person which gives us insight into how our loved one might be thinking.

I remember the first time I was embarrassed for my husband in public. It was in the first 5 years since his diagnosis of Parkinson’s Disease, and we were at a public restaurant. Dyskinesia set in, and he was moving uncontrollably while seated across from me. He leaned toward me and asked, “Do I look normal?”

He looked like some of the footage we see of Michael J. Fox when he is experiencing dyskinesia which makes it look like he cannot sit still. This can happen with a burst of carbidopa/levodopa, which is the leading drug to control the symptoms of Parkinson’s. (That is a simplified explanation. More on that another day.)

But back to hubby’s question. For many years he could mostly mask the symptoms of Parkinson’s, but they did begin to cause necessary changes in his life. When he was still working post diagnosis, he shuffled his feet as he walked from office to office at work. He had to concentrate to control that so he did not call attention to himself.

As the disease progressed, he realized that he had trouble carrying things while walking at work. If he wanted to carry a drink, he had to be sure it had a lid, and filling it only half full was safer than totally filled. Eventually he had to leave his drink behind, but he could manage a pad of paper.

There were some things we would normally do with one hand that he had to do with 2. That made the shaking less noticeable.  He wanted to appear as normal as possible, keeping his symptoms hidden, even though his coworkers knew he had Parkinson’s, so he kept adapting.

When the affects of the disease made work too difficult, he retired on disability, ready to enjoy his time at home. And he did enjoy many good years researching and writing at home. In that period of his life, he could forget about having a disease and just enjoy his freedom to create. He didn’t have to hide anything or mask his symptoms.

This was true for the first 19 years of his life with PD. Then I remember the day he said to me, “Well, I guess I can’t hide the fact that I have PD anymore, can I?”

I wanted to reply with, “You are delusional if you think you have been hiding it all along!” But, of course, I didn’t.

Instead, I smiled and said, “Have you been trying to fool people all these years?”

When I think of normal in the context of chronic and degenerative disease, I believe that whatever life looks like today, is today’s normal. Life is always changing, so tomorrow may be a new normal, and that is okay. We just adapt. That’s who we are. Caregivers. Adapters.

Thanks for reading, and have a great week ahead.

I am more than a Caregiver

We are CAREGIVERS! Here are some truths about us.

Truth –   As caregivers we must learn everything we can about the condition or disease that our loved one has. That knowledge will help both us and them in the long run.

Truth –   We are constantly adapting our home and our lifestyle to meet the changing needs of our loved one as their condition deteriorates and progresses. That is what we do to make our lives easier on this journey.

Truth –   Sometimes our lives seem to be totally immersed and surrounded by that particular disease or condition? My life seemed to be consumed with Parkinson’s Disease as I cared for my husband. If you feel that way today, please know that I understand and have been right there!

These truths are the result of our strong desire to care for our loved one in the best way possible going forward. And they are good. They are positive. We are caregivers who CARE for our loved one.

But there is more to us than caregiving.

Truth – We do have other people that we care about. We have other family members and friends whom we should not neglect. They will be with us to encourage us along the journey of this disease and after our loved one has passed. We must stay connected to other people while caregiving for our loved one.

Truth – We do have other interests like hobbies, causes, or even occupations. While we may not have as much time to devote to them now while caregiving, one day we will have more time and will want to get back to those things that bring us joy. So, we cannot give up on things we love to do, even if we have limited time now. One day we will have more time to devote to them.

Truth – We are more than caregivers. We are people with talents and interests and gifts that have yet been untapped. So, when the days are long and it seems we are only here to clean up messes and repeat ourselves for the 3^rd time in a day, we must remember that each season of life is temporary. “This too will pass.”

There is another season to come when we will have time to get back to things we had to set aside. Or perhaps we will have time to take up something new that we have always dreamed of doing.

My goal is to encourage and support those who care for someone with a chronic or degenerative disease like Parkinson’s Disease. And today I say to you that you are more than just a caregiver. You are a unique person, created by God to have many interests and gifts. Some may have to be set aside for a time so you can devote your energy and focus on caregiving, but do not give up your dreams and loves. Just keep them minimally for now. The time is coming when you can resume those activities and pick up a few more!

Have a great week ahead, and thanks for reading and commenting!

Who Me? Ask for Help?

Many of us pride ourselves in being self-sufficient. We can do this. We are strong, independent caregivers, and we have been doing fine until today.

But sometimes we do need help. Sometimes we just cannot do it all by ourselves. In some situations, we feel as if we are in over our heads, and we find that we must humble ourselves to ask for assistance.

We will have to admit we are not all-powerful. We may even have to allow someone to do things in a different way than WE would do them. That might involve giving up a little bit of control, which is difficult for some of us to do.  But those of us who enjoy a challenge could even think of this as just that – a challenge to see if we can allow someone else to help!

The other side of the coin is that there are people out there who are trying to help us, who would love to help us. Several have already offered saying, “Hey, just let me know if I can help in any way!” They really mean that, so perhaps it is time to take them up on their offer and allow them to fulfill their need to give to us.

As a caregiver for 23 years, I asked for help often. Friends picked up things from the store for me, some brought us dinner, some just stopped by to visit for a few minutes (which gave me someone else to talk to), and some stopped by and dropped off flowers just because.

Now I am on the other side since my husband has passed, and I am eager to help, to be on the giving side instead of the taking side. Thinking I have written about this before, I looked through previous blog posts and found one from August, 2019, which you can access from the list on the right. In that blog I gave suggestions for things people could do to help. My favorite is this: chat with me about something besides Parkinson’s.

When you are immersed in a disease and its effects 24/7, it is nice to have a conversation about something totally different. It helps to get our minds off the topic that consumes our every thought as caregivers, and it gives us a diversion to a wider and hopefully more positive perspective on life.

It is even fun to talk about future plans and to dream of things to come. Dreaming elevates our thoughts from the everyday nitty gritty to something more beautiful and hopeful.

My challenge to you this week is to ask for help from a friend, perhaps someone who has offered. If you don’t have a specific need, just ask them to stop by to visit. While they are there, talk about something other than illness, and don’t forget to do some dreaming of things you’d like to do in the future. How about a trip? Maybe to Italy or Greece?

Thanks for reading, and I hope you are encouraged and

inspired to take up my challenge this week.

The Pressure of Decisions

My only goal is to encourage and support caregivers, especially those who care for loved ones with chronic or degenerative diseases like Parkinson’s Disease. My credentials are that this was my life for 23 years.

I am not a doctor, nor do I play one on television. And I would not presume to diagnose anyone’s condition. But I will presume to understand what you are going through as a caregiver, having been there. Today I’d like to reiterate some advice I was given by a nurse friend. Perhaps this applies to you.

Caregiving means making a multitude of decisions, both great and small. We were blessed with 2 nurses who helped us think through and talk through several life-altering decisions, and they had some great advice for us.

Find out what terms really mean and what they entail.

If we have no formal medical training, sometimes the medical world seems like an overwhelming place, especially when professionals throw big words at us that we barely understand. So, it helps to write these terms down so we can ask a friendlier professional what they really mean.

When a doctor wants to begin a long-term procedure that will alter our lives, we owe it to ourselves to do some investigation. To look it up online. To do our research. In my opinion, it helps to get 2 or 3 different people’s take on something that could change our entire lifestyle.

Do not feel pressured to make snap decisions.

Whoever is asking us to decide may WISH we would make it right that minute, but to reduce regret or second-guessing ourselves, we have the right and privilege to take time to think through the decision. Sometimes we only need a few minutes to process the information. Sometimes we need to bounce our thinking off a friend or other professional. If this decision needs to be made today, that may be our best course of action – calling a trusted friend and talking it through.

However, if the decision can be made next week or even next month, getting a second professional opinion may be in order. So, seeing a second doctor might be the best course of action.

Whatever the situation, feeling pressure to make a snap decision is always so stressful. It can cause us to panic and make an emotional decision that may not always be best.  

None of us has all the answers, but we do have a God in Heaven who does, and prayer should always be the first part of our decision-making process. In answering our prayer, sometimes God sends human people to help us understand these situations.

My prayer for you today, my friend, is that when we feel overwhelmed or confused by medical situations, we will pray for God’s guidance and peace. We will also reach out to trusted friends or professionals for advice.   

God bless you this week with wisdom and peace.

Five Minute Friday – QUIET

Some Fridays I respond to a prompt for Christian writers on the http://www.fiveminutefriday.com website. Here is my response for today’s topic – QUIET.

My husband passed into Heaven 5 weeks ago, and when I meet friends, the first thing they ask is “How are you doing?”

I usually say something innocuous, and sometimes that is the end of the conversation. But sometimes they ask, “What is the biggest change for you?” To that I answer, “THE QUIET.”

A Quiet Place

It isn’t that my husband talked often or loudly, but it is the quiet that fills the house unless I make it otherwise.

At first it was uncomfortable and almost eerie, but not so much anymore. Actually, I quite like it. It gives me space to think without noise distracting me. It gives me much more time to pray and much more reason to pray. No one else is listening to me right now – only God. I smiled as I typed that, because I know I only have to pick up my phone and call someone to have them hear me, but God doesn’t need the phone. He is right here with me. And He is listening.

Many years ago I read a poem that begins, “I needed the quiet, so God put me aside.” I thought of that this morning, so I researched and found the entire poem. Even though the poem was written by someone who was sidelined due to injury, the idea is still there. Here it is. May God bless you today in the quiet of your day.

 I needed the quiet so he drew me aside
     Into the shadows where we could confide,
     Away from the bustle where all the day long
     I hurried and worried when active and strong.
     I needed the quiet tho at first I rebelled,
     But gently, so gently my cross he upheld,
     And whispered so sweetly of spiritual things,
     Tho weakened in body, my spirit took wings
     To heights never heard of when active and bright,
     He loved me so greatly he drew me away.
     I needed the quiet, no prison my bed,
     But a beautiful valley of blessings instead —
     A place to grow richer in Jesus to hide
     I needed the quiet so he drew me aside.

                                    – Alice H. Mortenson

When We Need Help

There may come a time when we cannot give all the care needed for our loved one. As their condition degenerates, sometimes we need professional help. At first it can be scary to invite someone into our home which has become our sanctuary, but there are things we can do to stay safe and make our home welcoming.

Our first experiences with extra help came after two short hospital stays. Both times the hospital social worker ordered home health care to follow us for 6-8 weeks upon my husband’s release.

The hospital ordered a physical therapist, an occupational therapist, a nurse, and a social worker. This is what we found:

• The social worker had great community connections and was a great resource for us, but we only saw her once or twice.
• The nurse was excellent and kept in constant touch with our primary care doctor. She went the extra mile several times to deliver blood to the lab and call our doctor to report high blood pressure. She gave us great peace of mind coming from a recent hospital visit.  
• The therapists came 2-3 times a week, and we became quite comfortable with them in our home. They each had a particular routine, and we enjoyed their upbeat personalities and friendly conversation.  

Here are a few things we did to help make everyone more comfortable.

Considering the 3 entrances to our home, we chose to have our care visitors use the entrance with the most direct route to where hubby would be. That was the back door for us, and it turned out to be the most convenient and logical.

When each new care worker came to our home, and sometimes even thereafter, I stayed with them in the room with my husband. I wanted to see what they were doing and how they treated him. That may sound awkward, but I tried to make it casual and normal. Sometimes I would just sit in a chair in the room working on a puzzle or project, and other times I would converse with them about what they were doing. I wanted to be sure he received good care, and I wanted them to know that I cared!

Each healthcare worker brought some kind of tote bag or case to carry their “tools of the trade.” So, I placed a table or chair near my husband for their bag. That gave them a surface to use to unpack their tools.

Especially during the pandemic each visitor had to wash their hands, so we kept the front bathroom for guests, and we used mainly the back bathroom. That meant I could direct them to that bathroom to wash their hands upon arrival, and I mentioned that this was for guests like them! Several told me how much they appreciated a clean bathroom to use before they left.

I tried to keep bottles of water in the refrigerator, and when each healthcare worker came, I offered them one. It seemed like a small thing, but at least they always knew where they could get water during their long day.

Sometimes things like offering water, having a clean bathroom, and having a surface to place your tools seem so insignificant, but they make someone’s day easier or brighter along the way. If we can do something easy for us to make someone else’s day easier, why would we not do it?

Let’s not be afraid to welcome healthcare workers into our homes. We all need a little help sometimes!

Five Minute Friday – LIFT

When you visit the website fiveminutefriday.com, you will find short blog posts written by a community of writers who have chosen to respond to a prompt given only on Fridays. It is a unique idea to unify us around a particular topic, yet celebrate our differences. Feel free to visit the website and sample these offerings.

I don’t write every Friday, but today’s topic resonates with me. As a “former” caregiver, there were many times when life was tedious, and there were times when I felt trapped. Stuck in a situation that I knew would end, but when? My husband had Parkinson’s Disease for nearly 23 years. Parkinson’s Disease is a slow degeneration of the brain cells, and there is no way of knowing the speed of it. Some days feel so long, especially when we are the sole caregiver.

Any relief, any help, even for an hour, seems like a huge LIFT! That is the first thing that came to my mind when I read today’s writing prompt.

My mind went back to the past 2 years especially, when life became difficult at our house. My husband was almost totally dependent. I couldn’t leave him alone in the house, and near the end of his life I could not leave him alone in a room, even to shower. So any help was a huge relief. My spirits were lifted when the CNA’s would come each morning to get him up. My mood was lifted each afternoon as the nurse came to take his vital signs and check his overall condition.

And it was not only the Hospice staff who lifted my spirits. Many of you called, sent texts, sent cards, and prayed for us over those last 2 long years. Thank you for LIFTING us up. We never know how much the other person needs us as we reach out.

I can honestly say that even during the months we were isolated due to the pandemic, I rarely felt alone. God surrounded us with family who stayed in touch, friends who came and called, and even strangers who smiled as they delivered packages and told us to have a nice day.

The bottom line is this. Everyone needs a little lifting up sometimes. The person we smile at today may need our smile more than we will ever know. And a smile is free! Let’s lift each other up by doing anything we can to brighten each other’s day.

Happy Friday, everyone!

Parkinson’s Disease By Stages

While we are used to hearing doctors frequently classify a diagnosis of cancer by stages, “you have stage 4 colon cancer”, or something similar, it is not often that we hear Parkinson’s described by stages. However, there are published stages that are loosely defined.

While going through my husband’s medical notes this past week, I found that he had researched the stages of Parkinson’s very soon after he was diagnosed. He wanted to see where he was on the spectrum of the seriousness of the disease. By taking a short test at the end of the article, he realized he was in “Stage One”. I think it gave him some comfort, some hope, and I think it helped him realize that he should not give up. Sometimes patients would rather not know, but for those who are interested, there are many scales available online.

Looking back, my husband had 19 very productive years with Parkinson’s, and for that I am so thankful. I hope even this fact will encourage both patients and caregivers alike by knowing that Parkinson’s is not a death sentence. It just means everyday life becomes inconvenient and each act becomes intentional.

Another thing I found in Carlton’s myriad of papers this week is an article he wrote in 2015. That means he was 15 years into Parkinson’s by this time. It is in 9 small parts, so here is part one.

Nine Wise Sayings That Help Us Cope With Parkinson’s Disease

Everyone can use a word of encouragement from time to time. I wrote this article specifically to encourage others with Parkinson’s disease and offer some real-world suggestions for coping with PD. I’m not yet 70, but I was diagnosed with PD 15 years ago. My case is as ordinary as anyone’s, but I’ve tried to stay ahead of the game by composing music and writing articles like this one. It is my wish that these Nine Wise Sayings will help bring to mind some handy ideas to help PD patients manage their symptoms in the same way they’ve helped me manage mine.

Sometimes we “PDers” become fixated on a task or destination and suddenly “freeze” mid-step. Here is a handy and successful imagery trick I often use to unfreeze. I choose my “X” spot by locating an obvious blemish or feature on the floor, like a curly knot in the hardwood strips or an uneven joint (or seam), even that old wine stain on the carpet that never went away will work. The ideal “X” spot should be—depending on the length of your stride—8 to 12 inches (or whatever is comfortable) ahead of your feet. Now, having chosen my “X” spot as the target for my foot to aim for, I look down and concentrate on the selected spot. Once my foot has acquired a specific target, my brain sends a “Go” message to my leg and it breaks my freeze and enables me to make progress forward or sideways, as the case may be.

I hope today’s post was encouraging to all who are caregivers and to those of our loved ones with Parkinson’s Disease or some other chronic or degenerative disease. That is my goal. That is my prayer.

Have a great week ahead, and God bless each of you.

A Brain Injury

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

When my husband was diagnosed with Parkinson’s Disease in June of 2000, many things that had happened in the previous few years made more sense. He had become extremely fatigued after short activities, which was not his norm. He had suddenly stopped swinging one arm as he walked, not a conscious decision. His steps (gait) had gotten shorter during the last year or so. He stumbled every time he got up from a chair – not fallen, just stumbled or felt as if the house had shifted. Another strange thing was that when upset or challenged, he got very upset and began shaking.

These had been troubling things, but we had not connected them until the diagnosis. Then, thankfully, all of these little things made sense. They were the result of a lack of dopamine in the brain. Parkinson’s caused all of those symptoms with many more to follow.

This week I read an article in which the newly diagnosed patient made a case for considering Parkinson’s as a brain injury. I can totally agree with that, but I would go one step farther and say that it is a small brain injury at first. And then, as one lives longer with PD, more parts of the brain are involved or affected.

It is a degenerative disease, so it is to be expected. We are so thankful that researchers are finding out more about the brain all the time, so there is hope for a cure. The 2 pieces of good news are that it is a slow disease and people are living longer and longer with it.

Over the years, this disease began to affect how Carlton thought about things, how much he could reason, and eventually how much he could understand new concepts and ideas. Thankfully, he had 19 good years in which he could still participate in things that interested him and brought him enjoyment.

There were times when I did not understand his response to situations. I wish I had read this article sooner because it might have helped me understand his reactions better. In the later stages of the disease, I believe he used all his energy to just survive, to just exist, and he had no mental bandwidth to make decisions about other things. The “brain injury” had grown to encompass all his reasoning ability.

I understand that more now, and I hope that helps as you interact with your loved one. Perhaps it causes us to be more patient when we understand the root cause – a brain injury that is growing.

Update – It has been nearly 3 weeks since Carlton passed into Heaven. I am doing well, I think. I am taking things slowly, enjoying this process of beginning a new chapter in my life. More on that next week.

Have a great week ahead, and God bless each of you.

Five Minute Friday – SLOW

Today’s prompt from fiveminutefriday.com was an easy write.

There are 2 slow things that come to my mind.

The first is Parkinson’s Disease. Even though I am writing this blog to encourage you who care for someone with a degenerative disease such as Parkinson’s Disease, I am writing to tell you that the fact that PD is SLOW, can be a blessing.

Many times it feels like a curse, and each day may seem long, and we might cry out to God for deliverance for our loved one and for us, but I am here to tell you that it is also a blessing that it is SLOW.

We have time to make sweet memories. Let’s remember to take advantage of that.

We have time to talk about the end of life and help allay any fears by expressing our faith in God who created us.

We have time to plan by getting our wills, our Advanced Directives, our Powers of Attorney, and all those important papers in order. (Seeking professional help with that gives us peace of mind.)

And we have time to show our love and devotion to our loved one.

The second SLOW thing is the recovery time after the passing of our loved one. I am only ending week 2 since my dear husband passed into Heaven, and I will admit that the recovery is slow.

More on that tomorrow, but I don’t think it’s a bad thing to move slowly even now. Today I’m going to stop and smell the roses – literally. That will be a slow thing, another GOOD SLOW thing.

Have a great SLOW day, and I look forward to tomorrow’s regular blog.