Parkinson’s Disease is so different for each person who has the diagnosis and that often means that we, as their CarePartners, will be asked to face unique challenges. It used to surprise me when something new popped up, but over the years I have developed a strategy that helps me deal with those unexpected events. It always starts with me stepping back to take a breath and see what is really happening. Then, I utilize a three-part strategy to look for an answer that works for us.

The first thing I do is define and acknowledge the challenge. Who owns this challenge, is it mine or my husband’s? In other words, should I step back at this point and leave him be, or step up and try to find a resolution? If it’s mine I move on to the next piece, seeking a reasonable solution. I may discuss the issue with my husband, maybe not, it really depends on the situation and whether I feel his input would be necessary. There will be trial and error as I strive to find answers that we can both live with, and that’s okay. Once I settle on a solution, the final act is to implement it and move on. I need to make peace with whatever decision I make because there will be another challenge tomorrow and this one needs to be done.

It’s not always easy for me to stop and think clearly when things are going haywire. I am a fixer; I like to jump right in and take care of things immediately when they happen. I have learned that this can make the situation worse. Taking the time to lay out a strategy, and remembering to use it has made facing the daily challenges much better. I wouldn’t expect my strategy to work for everyone because, as I mentioned before, every CarePartner faces unique difficulties based on what their Person with Parkinson’s faces. I would, however, suggest that everyone needs to consider creating their own strategy because acting with intention is always better than reacting with panic when things go wrong.

Being a CarePartner is difficult, but the good news is that we don’t have to take on this task alone, there are just too many resources out there to support us. National foundations that provide support for your Person with Parkinson’s also have information for Partners. Even more important to me are the regional and local supports that are available. There is nothing so wonderful as sitting across the table from someone who really understands what I am facing every day as a CarePartner because they live with someone with Parkinson’s Disease too. In this journey, connections matter.

I won’t try to name the many different resources available; I just encourage everyone to look for help. It was years of struggling before I finally got smart enough to look. Then, a quick internet search for me and I found national organizations as well as state resources. Contacting our closest state resource gave me local names to call. Within a few hours I was talking to someone in our community and making plans to attend our first PD support group meeting. I couldn’t make it through my days without my network of support. I often find myself thinking about them and remembering tips we have exchanged.

In case you are still unsure where to start, here are a few websites that I find particularly helpful- Parkinson’s Foundation, www.parkinson.org; Davis Phinney Foundation, www.davisphinneyfoundation.org ; and the Michael J. Fox Foundation, www.michaeljfox.org. All of them have information for families and Davis Phinney’s wife Connie actually leads a monthly virtual support group that I enjoy. Again, the best support comes from those who are also living the life and I find it in my local network. Know the resources and use them, they can make your life as a CarePartner much easier as we all share the journey together.

We have made some changes to our home in the past few years, things that will allow us to age safely here. While many of the changes were made with my husband’s needs in mind, I am pleasantly surprised to say that I enjoy them just as much, if not more than he does. And I was able to do many of them myself which gave me a great sense of accomplishment, something that I don’t always feel in my role of CarePartner.

I no longer think of them as home modifications but rather home modernizations, things that make life easier for both of us. One of the first things I did was to remove the ugly old door knobs and replace them with attractive lever handles. It is so much easier for me to get in the house with those armloads of groceries these days. Another update involved installing grab bars in the bathroom. Even though I can still shower and get off the toilet without assistance, I often find myself reaching for the grab bars. Why not use them if they are there?

Speaking of bathrooms, one other modification that I can claim credit for is our bidet toilet seat. Personal hygiene can become a real challenge for us as we age. I saw a working bidet when I was shopping for a taller toilet and was intrigued. It took me a while to convince my husband that we should give it a try, however now that we have it, we both use it regularly. We needed an electrician to install an electrical plug by the toilet and then I was able to attach the seat myself. We call it our “French toilet”, (bidets were first used in France in the 1600’s), and it works like a champ for those tough situations.

Home modernization can be scary and expensive, but so is moving into senior housing. We love our home and want to stay here. By diverting funds that we had set aside for travel, we are making our home more livable, and it is working for us. Doing much of it ourselves gives us control over what it looks like and it looks pretty good, if I do say so myself.

I talk a lot about exercise because it has become an essential part of our lives. We exercise together nearly every day and that is not what I expected retirement to look like. I saw us travelling, relaxing, enjoying life, not taking up boxing, but here we are. I blame his Parkinson’s Disease for this; however, I should really be thankful because not only are his Rock Steady Boxing classes slowing the progression of his illness, they are also helping me live a healthier life.

The thing about it is that I wonder what I will do when he can’t box anymore? I am there as his coach or boxing buddy and, when he doesn’t feel like boxing, I don’t get the exercise either. Perhaps I am borrowing worries from tomorrow but wouldn’t it be great if I had an exercise program that addressed my particular needs as an aging woman rather than his as an older man with Parkinson’s Disease?

Whatever I am doing, I know that I need to continue. It may very well be that I need to find an exercise program for me beyond what we are doing for him. Maybe he could come along as my coach one day a week? Then, when he doesn’t want to exercise, I can still participate. My ability to care for him is dependent on my physical well-being, perhaps it’s time I found a program that prioritizes it.

I came across a quote this morning attributed to Lao Tzu, Chinese Philosopher, that reads “Being deeply loved by someone gives you strength, while deeply loving someone gives you courage.” Reading that brought my parents to mind. Their journey with Parkinson’s was very different from the one my husband and I are travelling, and my mother definitely had to be strong and courageous to face the challenges they encountered.

My father developed PD psychosis early in his diagnosis. Before his illness he was a very loving and attentive husband. He was the guy who would bring mom a bouquet of wildflowers or buy her perfume even if she never wore it. Once PD hit that all changed. There would be times when he was there with us and as loving as ever, but then there were also the times when he didn’t know who she was. There were times when he was easy to be with and times when he was upset and accusatory, PD confusion convinced him she was having affairs with other men.

Her journey as a CarePartner was much more difficult than mine has been. I regret not understanding more of what she was going through at the time, perhaps I could have been more helpful. What I do know is that the love they shared gave her the strength to continue. Her love for him gave her the courage she needed when it became time to let others care for him and then, when the time came, to say goodbye. I can only hope I am as strong and courageous as she was, I know I have the love.

I have been thinking that I would like some quiet time at home, time by myself. The only way that could happen is if my husband were to go out somewhere else. He doesn’t drive, he can’t walk great distances, he doesn’t belong to any groups other than our PD support stuff. He is not comfortable with small talk and doesn’t drink much coffee so going out with a friend is really not a solution. Plus, he has no real desire to go out simply to give me some alone time. He is okay with socializing through his daily exercise classes on Zoom. It works for him; I need to figure out how to make it work for me.

When I decide to create a plan for self-care, I must take my husband’s personality, capabilities, and desires into consideration. In the above scenario, I was struggling to find someone who could take him out so I could have the house to myself. I finally realized that it is not fair to force him to go out simply because I think I need alone time, that’s not self-care, that’s just self-ish.

My self-care needs to support his wellbeing and not become a negative event for either of us. If I take a realistic look at where we are compared to where I think I want to be it may bring a different awareness. How much of what I do is based in actual need and how much is based on my skewed vision of what I think he needs? Adopting a clearer perspective allows me to work with him to create a shared plan that respects both of our needs equally. A plan, of course, that is open to compromise and modifications because his Parkinson’s Disease always has a plan of its own. 

I wrote recently about a fall I took and how my husband, in his desire to help, wound up falling on top of me. Neither of us sustained severe injuries, thank goodness, but it reminded me that we really need to talk about what to do if I have an accident or if I am sick. He needs to know what to do in the moment as well as what to do longer term to care for himself. I could have easily broken my hip when I fell, what should he have done differently in that situation?

The first conversation we had, after the fall and once we were in a safe location, was that he really should have let me be. If I had been seriously injured it would have taken a professional to get me out of the hole. Otherwise, I needed to have the opportunity to assess the damages and then act for myself. I know how difficult it would be for him to just stand and watch my struggles because I had to learn to leave him alone when he falls. His not acting until I knew the extent of the damages would have been the best action he could take.

Beyond that, I need to make sure that he is aware of my back-up plan for when things go wrong. We need to discuss who he might call in the event something happens to me. He needs to know that I have several meals in the freezer in case I am not able to cook for a few days. I need to keep our monthly wall calendar up to date so if someone comes in to help, they can see our appointment schedule. I need to post information about where to find his medical information and outlining his daily needs somewhere accessible so whoever comes into help knows what is expected. We need to keep this information updated and revisit it regularly so we are ready when the unexpected occurs because, after all, I might have broken my hip in that fall. 

My ability to help my husband isn’t always limited by what I can do, but what I should do. It would be easy for me to do more for him, but would it be best for either of us? He recently had some dental work done and I found myself stepping up the level of support I was providing while he was recovering. Now that he is better, it is time for me to step back and let him take over again. I need to encourage and allow him to do as much as he can now to preserve his skillset because it is likely there will be a time when he isn’t able to do as much.

There are going to be things that he can’t manage and I have to decide whether I have the capacity and the ability to do them for him. Neither of us want my days to be simply about providing care for him because we understand that could seriously impact our relationship as a couple. When we get nearer to that point, I will look outside for additional help. If we hire someone with the proper training to help both of us along the way it will free me up to be his wife and partner in this journey, not his caregiver and nurse.

I know my tendency is to do it all myself. I am a fixer, I am a carer (is that a word?), I am an overachiever. I am going to have to be realistic about what he should be doing for himself, what I can do for him, and what is best done by a professional. My task is to make sure that my husband receives the best care by discussing his needs with him, setting limits on what I do, and then following through to make sure everything else is covered.

“I statements” are great tools for communication helping both parties in a conversation articulate and clarify their individual positions. It basically forces each person to take a moment and explain their thoughts on a personal level. “I feel ____ when you ________.” This is especially helpful during disputes, and I realized recently that I can use this same principle on an individual basis when having internal conflict or facing challenges.

“I statements” are defined as “a powerful tool to help you express your feelings to someone else without assigning blame or making them feel defensive” on the website Socialself.com. They go on to say it is a way to “show that you’re taking full responsibility for your feelings.” When I am feeling frustrated or challenged in my own life, wouldn’t it be great if I could take a moment and use this same framework to clarify what is bothering me and define everything I am feeling? If I can let go of blame and turn off my own defense mechanisms, I can own my feelings in the moment. Once I understand what is bothering me and how I am feeling, I have a starting point to figure out how to fix it.

I have a lot of difficult feelings thanks to my husband’s diagnosis of Parkinson’s Disease. “I statements” encourage me to stop, figure out what is actually happening, and then articulate my thoughts even if just to myself. “I am sad when my husband’s PD doesn’t allow him to go on walks around the neighborhood with me anymore.” I clearly define and own the loss, I place the blame on his disease where it belongs, and I better understand my feelings so I can work towards finding a resolution.

To see more about “I statements” visit I-Statements: How & When to Use Them (With Examples) (socialself.com).

Self-care is one of the most challenging components of being a CarePartner. I often find myself getting so wrapped up in caring for my husband that I lose track of my own needs. Things happen out of convenience rather than choice. My personal needs end up at the bottom of a very long list and never seem to work their way up. I stopped to take a look at some of the things I was doing and wondered is this really the best I can do? Check out the following list of questions I asked myself and see what you think.

• When I get my haircut at the same place and the same time as my husband because it’s convenient, is that really self-care?
• If most of the new clothes in my closet aren’t things I purchased from a store, but are t-shirts from annual fundraisers for the local Parkinson’s organization, is that really self-care?
• Dining out at specific restaurants simply because they are easily accessible, have comfortable seating and serve foods I know my husband can manage, is that really self-care?
• Choosing not to do things I enjoy because he can’t go with me, is that really self-care?

There are other things that I could add to this list, but should I? I would argue that all of these things are indeed self-care or at the very least self-preservation. Parkinson’s Disease has brought change to both of our lives and with that change comes compromise. My task will be figuring out how to balance that compromise so that we both can get what we want. Good self-care for me may mean that I am conscious of what I am doing, aware when I am putting my needs at the bottom of the list. Then I can intentionally shuffle that list occasionally so we are both getting our needs met. I think I’ll start by finding my own hairdresser.