My husband is a very intelligent and accomplished man with multiple degrees and yet now, thanks to his diagnosis, it sometimes seems like I am talking to a child. His brain processes are slower and without the autonomic supports we all depend on, so all communication needs to be clear, concise and consistent. He struggles with what should be easy tasks and I find myself repeating instructions and using simple terminology as I try to help him figure out what comes next.

I often see this in our exercise classes. We have four different coaches that we work with on alternating days. They are all excellent instructors, but they also all do things just a little differently. There are basic moves we do in every session yet each of them has unique ways of cuing them. It’s great because it challenges my husband to use his brain and his body, but it can be frustrating too. I find myself stepping in, showing him the move that we did just yesterday. Once he makes the connection, he is usually able to figure it out on his own.

I know that none of this confusion is his fault, it has to do with pathways within his brain that can change from day to day. Thank goodness he still has the capacity to develop new neural networks that can sometime make it easier for him. And, I am working on being patient and communicating at a basic, yet still respectful level, as we navigate the reality of life with PD.

My husband has a philosophy, a way of dealing with his diagnosis that inspires me. He always looks at what he can still do rather than looking at what PD has taken from him. I struggle to remain so positive, but his constant presence helps. He knows there are things we have both lost and instead chooses to focus on what we have.

Coming from that approach, I am so thankful for the many things he is still able to do for himself. I am thankful that he is open to trying new things and also that he is able to ask for help when he needs it. I am thankful for his medical team who have helped us navigate this disease for the past decade. I am especially thankful for treatments such as Deep Brain Stimulation that have helped us reset some of his most challenging symptoms. I am thankful for his exercise team, especially the fact that I have been able to tag along, because I am more fit now than I have been in many years. And, I am very thankful for all the people who have come into our lives because of the support groups we attend. They are friends I hope to have for life.

I struggle sometimes when I think about the things we would be doing differently had PD not come into our lives. I understand that I must allow myself time to grieve those losses, but one look at my husband always makes me feel better. He is still here and we are still fighting this illness together. For that I am truly and wholeheartedly thankful.

Creative thought is essential when facing a new challenge and may even help you find a better way to overcome an old one. If I step outside of a situation and try to observe it with an objective viewpoint, I can often see that I am making things more, not less, complicated than they need to be. I also often find that I am taking care of my husband’s needs with no consideration for myself in the moment.

I am planning for the holidays, wondering what they could look like if I put my needs first. For one thing, I would not spend the day cooking and would instead be able to sit and enjoy family time together. We might go out for a walk in the neighborhood so they could experience a bit of our lives and the things we enjoy doing. It wouldn’t matter if the house was a bit messy so I wouldn’t spend a week prior cleaning carpets and washing windows. I could bake some family favorites to share but it would be on my schedule and my favorites would definitely be included.

Expanding that even further, how would all of our days look if I put my own needs first? It would be nice if I weren’t so tied up with chores around our home, perhaps next year we finally hire that yard service. That may not seem like a creative approach but it is definitely outside of the box for me as I’ve been mowing lawns since I was 10 years old. I’m not sure what else would change because, after several years of trial and error, we have developed a routine that works for both of us. I use my husbands “on times” during the day to do things for myself. I get out of the house a couple of afternoons each week while he is resting to volunteer at a local museum. If I need an additional break, we talk about it and find a way to make it happen. Most importantly, I have accepted the reality that meeting his needs meets my needs on a primal level and that is core to my owning the role of CarePartner.

There are things that my husband can do and things that are just outside his ability zone. For example, he used to cook and enjoyed preparing dinners for us. When his tremors became too intense for it to be safe, he decided to give it up.  He does still prepare his own breakfast, but that only involves a toaster or a microwave and I am always close if he needs assistance. What if, instead of giving up completely, we had done an activity analysis to see which parts of preparing a meal he could still do and where he needed support?

I am borrowing this concept of doing an activity analysis from the world of Occupational Therapists. They regularly analyze tasks to help their clients figure out how to manage life’s challenges and live independently. Their analysis takes a deep look at the what needs to be done, breaking it down into smaller chunks and evaluating brain and body functions needed for success. Obviously, we would not need to dig so deep to figure out what it would take for my husband to cook a meal. We just need to identify the basic steps so we can figure out where he might need to modify the process and where he might need help.

Why am I looking into this now? As my husband’s illness progresses, his capabilities are going to decline. A technique like this will allow us to analyze exactly where his difficulties are and modify activities so that he can do them for himself. We can start by deciding together on something he wants to accomplish, then writing out a simple list of the steps it takes to complete it. Looking at each step honestly helps us see if it is something he can do or if it needs adaptation to meet his skill set. We can look at where I might need to step in and help, but only as a last resort. My goal is to allow him more independence and lighten my load by giving back some activities and expanding his capacity. (and maybe get a good dinner out of him again sometimes!)

For me burnout is those times when I am already overwhelmed first thing in the morning. I wake up knowing that I have a ton of things happening and don’t want to get out of bed to face them. Then, when I do get up, I am cranky with my husband, robotic in my chores, angry at the world. I walk around all day with a sense of dread of what else is going to be asked of me and I end up back in bed ruminating on everything that went wrong. It’s a difficult cycle to break.

In researching burn out, I stumbled across an interesting assessment tool called the Zarit Burden interview. As I read through it, I was reminded that burnout can sneak up on me and the importance of always being aware of the load I place on myself. I completed the assessment today and found that I am in the lower category, not feeling burdened too much at this time, but I know that could change quickly based on my husband’s condition.

I am going to keep this link available to revisit as things change. I know, it will be one more thing to do but I think it will be a worthwhile endeavor if it helps me recognize when I am trying to take on too much. Seeing burnout before it happens can remind me to slow down and take care of me. Because unless I am taking care of me, I am not taking proper care of my husband.

If you are interested in assessing your level of stress visit Caregiver_Burden_Assessment.pdf (agingcare.com).

It is easy to let your needs go when taking care of someone else. You are either too busy or too tired to think about what you need, let alone to do it. However, by not meeting your personal needs, you are not going to be able to be there completely for your Person with Parkinson’s. There is a good chance that you will find yourself blaming them for whatever it is you are missing out on rather than looking at ways to make sure you can both find satisfaction.

There are many activities that I do for and with my husband and a couple that I do just for myself. We have developed a pretty good routine that allows space for both of us. I have my mornings to write while he is showering and dressing but I am close should he need me. We exercise together most days and that has been really good for both of us. I get away a few hours every week to volunteer at a local museum, something that meets my needs but also brings a different dimension to our relationship when I bring stories home to share.

I don’t think that we ever actually sat down and prioritized our daily activities, our schedule has evolved as my husband’s symptoms allowed. There are days when I need to be closer to him, days when he needs to be left alone. I tell him when I need time to be by myself, maybe to go outside to work or take a walk. We plan outside activities together, things like lunch with friends or coffee dates. We discuss changes to make sure that all is well and we are prepared for potential issues. Most importantly, we recognize and respect that each of us have needs and want to make sure that we are both satisfied at the end of each day.

One of the first things we were told about PD was that it was not a terminal illness. I think that was supposed to make us feel better but I’m not sure it did. Instead of a disease that shortens my husband’s lifespan, he has something that is chronic, debilitating, unpredictable and progressive and that will be with us for the rest of our time together. And now, a research study published in October states that the mortality rate from PD has risen 63% in the past 20 years. I am struggling to understand how a disease that isn’t fatal has a mortality rate? What do I do with this new information?

My father‘s cause of death was listed as pneumonia. He was only 73 years old and should have been able to survive had he not also been fighting Parkinson’s Disease. His cognitive symptoms made it difficult for him to understand and follow medical directions, his physical symptoms impacted his body’s ability to fight back against the inflammation in his lungs. Did he really die of pneumonia or should it have been attributed to his PD?

Which brings me to the real question, is it fair to say that Parkinson’s is not a fatal diagnosis? I think not. It would be interesting to know more about the people whose deaths were included in the study mentioned above. Did they die from PD related falls? Like my dad, was it a respiratory infection they just couldn’t overcome? More needs to be done to look into the correlations so we can protect against them. We need to know why this diagnosis puts my husband at a greater risk of death so we can both be proactive in his care. How can we fight against something we don’t fully understand?

To learn more, see the original report in Trends in Mortality From Parkinson Disease in the United States, 1999–2019 | Neurology, published by the American Academy of Neurology.

I am borrowing the term “helicopter” from parenting classes I used to teach, but it certainly seems appropriate when I think about my behaviors at times. I mentioned recently that I often try to be a buffer between my husband and the world, a great example of my tendency to be overly protective. PD can be isolating; my husband needs opportunities to interact with others and I should not be standing in his way no matter how good my intentions.

We exercise together. I tell myself that I need to be there for safety reasons yet am constantly overstepping as I push him to work harder or correct his moves. I speak with his coach, presumably on his behalf, but really just to assert my presence as his partner. I attend all appointments, and that is necessary, but I also hear myself speaking for him and have to remind myself to shut up and let him talk.

I find that it is a delicate balance between having an awareness of my husband’s challenges and trying to eliminate them. It isn’t helpful when I intervene without considering his primary need for self-sufficiency. My hovering can be another challenge for him to overcome instead of support as he tries to engage in his daily life. There will be times when it’s easier and quicker for me to step in, but is it really the right choice? I don’t have a license for this helicopter, perhaps I should land and let him take control.

It’s a hard but true fact. A 1999 study published in the Journal of American Medicine said that family caregivers were 63% more likely to die at a younger age than their non-caregiving peers. Added to that is the fact that if the person we care for exhibits cognitive decline or dementia, then 50% of us are likely to die before our loved one does. Who cares for them then?

We all know the difficulties, the added stress of trying to do it all, the pain of watching as our loved ones deteriorate and, in some cases, forget who we are or why we are there. It’s an often impossible role we undertake as we try to buffer the world for them and alleviate their challenges. We come into this with the best of intentions but quickly learn just how difficult it can be and how unprepared we are for what their Parkinson’s Disease diagnosis does to us.

Moving forward, I am working to find ways to protect and nurture myself. I see my doctor regularly and follow all her recommendations. I exercise and eat healthy foods. I limit my activities to things I can do safely and try not to take too much on. When a task is beyond my capability or capacity, I seek help. I remember that we are partners in this journey with PD and that my care needs to come first if I want to be here to care for him.

Some personal hygiene challenges, things like clipping toenails, are beyond my husband’s capabilities thanks to his PD diagnosis. At first, I was just ignoring them and waiting for him to ask before stepping in to help. Eventually, it became obvious that this was an area where he just couldn’t ask for assistance so I finally started the conversation. Talking about where he might need additional support was challenging yet it opened new doors of communication between us and has resulted in growth in his abilities and my capacity to provide care. 

Some of my fellow CarePartners look at hiring someone to take care of these issues. I know one couple who have made going out for pedicures a part of their monthly routine. Another person has a visiting nurse who comes in regularly to examine her husband’s feet and trim his nails. Instead, we decided to tackle what we can at home rather than look outside for help. The day we have to hire outside help will come soon enough.

Discussing these problems with my husband can be embarrassing, however, by working together we have overcome much of the initial discomfort. It has been good for us to try to figure out what works in each situation and has also shown us that we can handle delicate matters without destroying our relationship. There are going to be things I am called to do that seem more in the caregiver role, and yet in the end I will always be his Caring Partner as we travel this journey together.