There are things that my husband asks me to do that I just hate. It may be that it is something difficult or it may be that I just don’t feel qualified doing it, yet I find myself going ahead anyway. What I recently figured out, with the help of a good therapist, is that when I go ahead and do those things I hate, it can make me resentful. Unfortunately, that resentment expresses itself towards my husband, not the disease that has brought us to this point. That is not fair to him or to me.

I don’t intentionally resent him; it happens without any conscious awareness on my part and can build up over time. The question my therapist asked was, if there are things I hate to do for myself, why on earth would I be doing them for someone else? Why wouldn’t I be looking for alternatives? And there usually are alternatives whether it is trying a different approach, using a different tool or actually hiring someone to do the more complicated things.

There will always be difficult things that I have to do for him and for those things I will need to adjust my attitude. If I take a moment to think about all the things he has done for me, all the things he has brought to my life, even all the things he would be doing for me if the situation were reversed, I can have a more thoughtful and positive approach. As someone recently pointed out, some things I do because I love him, not because I love the task. Love outdoes resentment every time.

My husband does so well that I really didn’t think of “off periods” as a problem. He struggles with stiffness and shuffling in the mornings, but doesn’t everyone? Then, I was speaking with someone at a recent conference, and they explained that those morning struggles are a classic example of being “off” his medications. They suggested we look at a newer intervention called “rescue meds” which deliver a small dose of Carbidopa-levodopa by inhalation. The medication gets into his bloodstream and brain faster so he is better able to move within a few minutes. I never really considered that my husband might need to be rescued before he even starts his day.

I came home from the conference excited about a possible solution to what I thought was an issue for us and shared it with my husband. He admitted that he is stiff in the mornings, then pointed out that something that takes even 10 minutes to work won’t make a difference. He told me that the reason he gets up early to take his meds and then returns to bed is so that they will have time to take effect before he finally gets up. He was appreciative of the information about the rescue drug and that I cared enough to be looking into it, but he doesn’t feel he needs it at this time.

The real issue for us was my assumption that because something bothered me, it was also a problem for him. I was reminded that, while we are sharing in this journey, he will be the one taking the lead when it comes to treating his disease until he can’t anymore. I can gather information and share it, but he gets to make the decisions as long as he is able, and I want that to be a very long time.

My role of CarePartner for someone with Parkinson’s Disease has much in common with my friend whose husband has cancer or my cousin who is caring for her elderly mom. While there are great resources that speak specifically to the needs of caring for someone with PD, there are even more resources available when I research my role of family caregiver. People have been providing care for loved ones forever, I need to be open to tapping into that wealth of knowledge for help in my journey.

When I look at the traditional PD sites such as Parkinson’s Foundation or APDA, the American Parkinson’s Disease Association, I am putting his needs ahead of mine. If I instead visit sites that are specific to my role in this journey, such as the Family Caregiver Alliance or even the National Institute on Aging, I find relevant information written to make my life as a CarePartner easier. And, of course, there is a ton of great information provided by AARP in their Family Caregiving Guides.

I don’t want to downplay the importance of having disease specific information, but much of what I do goes beyond PD. Self-care, coping skills, even resources for basic needs are all bigger than his diagnosis and it is important that I not limit myself when searching for the support I need. One of the most impactful activities I have ever participated in was a holiday celebration of all caregivers, something I would have missed out on had I not looked beyond the obvious. My needs as a CarePartner are not PD specific, I need to remember that fact when looking for solutions for me.

It happened just last week. I had lunch with a friend from my CarePartner network on Monday, there was a virtual support group and an appointment with my therapist on Tuesday, our breakfast group on Friday and a half-day CarePartner summit on Saturday. That’s a lot of support for one week and, while there may be times when I would need that much support, it really felt like too much. Just as Parkinson’s Disease can take over our lives, I wonder if CP support doesn’t do that sometimes?

I am learning that it is important for me to be choosy about the activities I participate in. My self-care and support needs vary depending on the day, my mood, even my energy level. There are times when I feel like I am doing great and all I need for myself is a brief walk outside or a few uninterrupted minutes with a good book. Then there are those times when I really need to talk to someone, to hear another person say they understand and that I am going to make it through no matter how hard it gets. There are times when solitude gives me peace and times when I really need the comfort of being in a compassionate and caring group of partners. Above it all, I need to know that both of these options are available to me during my journey.

I need to be conscientious and intentional about my self-care and the support activities I participate in. I need to remember that my being there helps not only me, but my fellow CarePartners too. I need to fully engage because if I am just going through the motions, I am cheating myself of the benefits. And, I need to be mindful because not everything is going to be helpful and I just don’t have enough time for those things that are not. As a friend once told me, “If it doesn’t make me smile, it’s gone.” Granted she was talking about the plants in her garden, but isn’t this a great measure to use for the things I do in my search for serenity?

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.