The first step for me was recognizing that changes were happening and that they could impact us both. I had to find ways to communicate respectfully with my husband about my areas of concern that would impact his independence such as driving. We had to look differently at his daily activities and chores he was doing around the house to decide which were safe and where we should find someone else (often me) to take over. We had to accept new realities in our relationship with each other and with the world around us.

Change is inevitable, but we have learned that we can slow it all down. He takes his medications and has had DBS surgery, both necessary and positive actions, yet the most effective thing we have done to counteract the change was exercise. We began working out together and, on days when I am tired or lazy, he inspires me to keep on going. I can’t believe his dedication and determination as he works daily to stretch, cajole and encourage stiff muscles and increase his range of motion.

I have seen many changes in our 10-year journey since Parkinson’s became the third wheel in our marriage. Some changes were due to natural aging, some due to his diagnosis of PD, issues he has had with his shoulder may be a little of both. At any rate, I will continue to honor and accept where he is each day so I can best support him as life moves on for us both.

It is snowing today, it snowed yesterday and will probably be snowing tomorrow. We are snowed in during a pandemic lockdown. If that isn’t an unexpected challenge, I don’t know what is! My patience is beginning to wear thin.

I wrote those words earlier this week and, while the snow is mostly gone now, the storm caused disruption in our lives and it is hard to get back on track. Thanks to the snow, appointments had to be rescheduled, exercise classes were missed, even our daily walks were impacted because you can only do so much when trapped in your house. I am thankful that we weren’t hit as hard as many people in our community, we never lost power and had plenty of food and water. And, the snowy wonderland outside the windows was beautiful to look at, just not for 3 days straight.

Things are slowly returning to normal and I am realizing how much I depend on our routines. I always blamed my husband’s Parkinson’s diagnosis for our tight schedule that seemed to limit what we could and couldn’t do. Now I understand that his schedule is a framework that creates a positive roadmap for both of us as we navigate the daily challenges of both retirement and PD.

I didn’t sleep well last night and yes, I am tired today. The first thing I need to do is tell my husband so he understands if I don’t respond quite as quickly when he calls. The second thing I need to do is consider whether I nap with him this afternoon to catch up a bit on that sleep I lost. The third thing I need to do is let it go.

Just because I am tired doesn’t mean that anything changes in our daily lives. If my husband has an appointment, we must still go. If he has an exercise class, he has to participate. I still need to make sure that there is food on the table for both of us. Activities of daily living need to continue.

Recognizing those responsibilities that can’t be put off, I can now look to see what I might be able to change. Does the laundry have to be done today? Do I have to cook or could we do take out instead? Can we take a short walk with the dog rather than the mile we usually do? How can I make it through this day without exhausting myself so I am ready for sleep tonight and a better day tomorrow?

My husband proofs these postings for me and after reading this he asked “what if I am the one who didn’t sleep?”. I wanted to say “you take an extra nap” but instead just smiled.

Life with my husband is intense some days. I find myself getting so deep into caring for his illness that I forget to care for him. When he fell recently, I spent the rest of the day following him and watching to make sure it didn’t happen again. I stepped too deeply in the caregiver role that day and forgot that he is my husband, not my patient. I realized that it was time to lighten up and be playful again.

When it feels like PD is taking over our lives, we try our best to find something to do that we did before. Early in our marriage, we instituted a weekly game night. The TV went off and the games came out. We planned it for Wednesday, midway through our work week, and it was a great way to have fun and stay connected. The games may change over the years, but we can still enjoy this and it reconnects us to earlier days.

We also like to go for walks together, with or without the dog. Long drives in the country are nice, my husband used to take his camera along but now we rely on our phones. We enjoy sharing a favorite meal at home or watching a fun movie together. The key is to put aside his diagnosis and find the fun again. I think we all have those days when, if we weren’t laughing we’d be crying, and isn’t a laugh between lovers better after all?

My husband tells me he feels unsteady on his feet but what does that really mean? He talks about how his toes curl in his shoes or how his feet sometimes don’t want to move when or where he tells them. His voice gets soft and he accuses me of not listening well enough. His shoulder is stiff or achy without reason and none of my suggestions seem to help. It appears that Parkinson’s Disease knows his body better than I ever can.

It is difficult to watch him fighting every day. I want to help, but this illness is wily and beyond my abilities. I get frustrated because something he did easily yesterday takes 3 times as long today. Communicating has become challenging as I cannot hear or understand some of his words. I get angry because it feels that I am losing touch with the man I fell in love with. Then, he looks at me and smiles, and there he is.

So, we continue the fight against our shared opponent, PD. I listen and try to help, but know that he is doing the very best he can regardless of the struggles. I will not be angry at him for the challenges he faces, instead will direct the anger towards the real culprit, Parkinson’s Disease. I will continue to love and be here for him, because then I am doing the very best I can as his CarePartner.

I am trying to get an appointment scheduled for my husband to have the Covid vaccination and it has become a much more difficult prospect than I thought it would be. I signed him up for one list only to learn that he is one of about 20,000 waiting there and the vaccines are being routed through a different process. So, then I went to the new process and again found that I was competing on-line with about 50,000 others for 3000 appointments. It was a very frustrating experience that triggered my anger and colored much of the rest of our day.

The difficulty is that he needs this shot. The challenge for me is that he cannot deal with the scheduling process himself and I must do it. But I have to find a way to get through without the anger and frustration that accompanied my last attempt. I am not sure what that will look like.

There are always going to be things that happen during my day that trigger negative emotional responses. If I am going to stay calm, I need to recognize and avoid as many of these things as possible. Then, by controlling my reactions to those triggers I can’t avoid, I can focus on positive actions that will lead to a good resolution. Sometimes, as in the case I mentioned above, my reaction needs to be to set it aside and try again another time. I will call it done for now and put it away so I can move on.

We cannot know where the disease will take us, but we can take the time to learn about what could happen. One of our first reads following my husband’s diagnosis was Parkinson’s for Dummies followed by the Michael J. Fox book, Always Looking Up. These were valuable resources that told us what we could perhaps expect as things progressed. Michael’s book gave us hope that PD was something we could live with and not the end of our worlds. We have since added multiple guides to PD such as the Davis Phinney Foundation’s Every Victory Counts, a manual for daily living that has given us great information as we move forward.

Books are helpful and give us a general understanding of the disease, but they cannot give us a roadmap of where my husband’s diagnosis will take us, we just have to live through it. So, we find ourselves 10 years in and still without a clue where we will end up. We recently took a detour following his DBS surgery, and are still waiting to see what our new reality will be. We know that his sense of balance has been affected, he fell yesterday for the first time since being diagnosed. While he didn’t hurt himself badly, it is concerning that balance issues may be part of his new normal.

What I do know about Parkinson’s is that I can never know it all. This disease will take us where it takes us and I just need to try to be ready and continue to bounce back whenever it knocks us down.

But what about when it unexpectedly takes a turn for the better?

My husband recently had Deep Brain Stimulation Surgery (DBS) and the surgeon told us that it would be like he had gone back five years in his disease, I didn’t believe him. Fortunately, he was right, it is like we have made a u-turn in our journey or are on a totally separate track now. My husband’s tremors are greatly reduced and he is more mobile that he has been in years. The changes that the surgery brought are amazing.

The challenge I now face is to accept this new normal. I told him the other day that I almost feel displaced, it’s like he doesn’t need me anymore. We are both having to figure out just what he can and cannot do and when he might still need my help. While I am thrilled by his reemerging capacities, I am struggling with adjusting my support and trying to understand where it is going next. Instead of worrying about whether he can do something, I worry about whether he should. Will the changes stay? What comes next?

In the early stages of my husband’s diagnosis his needs were minimal as he was able to do most things on his own. Then, he caught a virus and it hit him hard. He wasn’t able to get out of bed and was so weak he even needed help eating. I didn’t know how to turn him over in bed, let alone safely get him up and down. We didn’t have any tools such as a walker or wheelchair to use even temporarily nor did we have a shower seat so he couldn’t safely bath. The additional work and worry exhausted me as I tried my best but failed miserably.

As his primary support, I need to know how to help him move in ways that will not put me at risk. He is taller and heavier than I am, if I do the wrong thing, I could injure myself or we could both end up in a pile on the floor and then who would care for us? And, as his diseases progresses, there is a good chance that we will be at the point where he needs additional help, will I be ready to provide it?

I was able to find some answers through our local Parkinson’s support organization and through the Area Agency on Aging and Disabilities. Both of these groups provide training for family caregivers on safe techniques for lifting and moving another person. The classes they provide address helping someone in and out of bed as well as getting in and out of a chair or a car. I took the classes knowing that some of the skills would be used now, others might never be needed, but they are in my toolbox and waiting. I won’t be caught unawares again.

See Health Risks for Family Caregivers published by the Arizona Center for Aging.

We hear a lot about how our partners with PD can be affected by mental health issues and, I know that in our case, my husband’s doctors check in with him regularly to make sure he feels okay. My question is, since we are on this stressful and progressive journey together, does anyone care about my mental health? 

Several studies have been done in recent years that tell us what we as CarePartners already knew, as this disease progresses our workload increases and we become more stressed, anxious and depressed. According to Healthline.com, “about 40-70% of general caregivers experience significant stress. Half of these caretakers also meet the official criteria for depression.” This quote refers to general caregivers with training, how can we not feel the stress and loss at even higher levels as we work with our loved ones?

What I have realized is that the doctors are always going to look to my husband first, as they should. Then, I will need to speak up and tell them what I am feeling. For once I will be advocating for husband by advocating for myself so we can both maintain a healthy and positive attitude in this fight against PD.

To learn more about caring for your own mental health visit The Challenge of Being a Parkinson’s Caregiver and How to Manage on the Healthline website.