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.

There is an online resource called “Parkinson’s News Today” that hosts forums for People with Parkinson’s as well as for those of us who love them. They recently posed the question in their forum for Caregivers “what is your greatest challenge?” and were surprised when most responded that watching their Person with Parkinson’s decline as symptoms progress was the worst thing ever. I wasn’t surprised at all, I live it every day.

When my husband was first diagnosed with Parkinson’s Disease, I was heartbroken. I had seen my father go through this and wasn’t ready to face it again. As my husband’s symptoms progressed, I saw that our journey was going to be different. Things moved more slowly but the tremors and stiffness eventually took away his ability to work, his ability to drive, even challenged his ability to dress and feed himself. Life became hard for both of us. His philosophy has always been to look at what he can do, not what he can’t. Unfortunately, I am not as good at seeing the glass half full, I see the challenges and grieve for our loss.

We have been given somewhat of a reprieve thanks to Deep Brain Stimulation. It took 10 years for him to decide to give it a try and it has been life changing. Once again, I see things that I had been missing, most notably his smiles. Yes, we are still facing challenges, but they are more manageable and I am starting to feel a little more optimistic as we are able to resume some of our activities. Yet I do wonder what life could have been like as I continue to work through the heartache of PD.

The holidays are coming, always a busier time of year at our house. In past seasons, I was often the one who hosted the family. This meant several days of housecleaning and decorating, shopping, cooking, generally prepping for the day and then a week to recuperate before doing it all again. Thankfully my sister would usually host one or the other of the bigger meals as we traded off those duties, but I still felt a certain responsibility to do more to make sure our kids and grandkids needs were taken care of. My husband pitched in where he could, but as his PD symptoms intensified, his help diminished.

Fast forward to this year. We have a daughter who doesn’t believe in celebrating Christmas, a son raising his family vegan, and the holidays have become very complicated. Last year, thanks to the pandemic, we had to celebrate differently and it gave me time to look at what really mattered. We didn’t all come together for a meal and yet we still found ways to connect. Maybe those traditions are just that, traditions that don’t necessarily meet our needs anymore?

So, for this holiday season I am going to look at starting new traditions that begin with meeting my own needs first. I will stop and take breaks when I am tired and not squish too many things into too little time. It may sound selfish, but by taking better care of me, I am more able to provide for those around me. Second in line will be my husband and then I will see how we can fit the kids into the mix. I am sure that with a little thought we can find opportunities to celebrate that allow everyone, especially me, to enjoy less stressful holidays and wouldn’t that be the best gift ever?

We actually got to try this out earlier this week. I wasn’t thinking when I went in for two shots, a Covid booster and a shingles vaccine, on the same day. I am not sure which one, or maybe a combination of both, hit me but I was sick for 3 days. Not go to bed sick, but definitely unable to do much of anything sick as I struggled to care for myself, let alone my husband.

He was so sweet as he stepped up and tried to help me. The first thing he did when he realized I was under the weather, was to insist that I not try to do anything. Then he stopped asking for help and started just doing things. He managed our day to eliminate some of the challenges and it worked. I was also able to pull some leftovers out of our freezer, making meal prep easier and quicker as I worked to recover. (You can never be overly prepared for emergencies. I always keep a few days’ worth of leftovers in my freezer.)

Trading roles was a brief reminder of what life must feel like for him everyday. I wanted to be up doing my usual routines, I didn’t want to feel helpless and dependent, but there it was. Having no choice in the matter, it was good to know that there was someone close by to help me figure things out and reminded me of the importance of being kind and loving when providing care. After all, that’s what I will want in a good CarePartner when it is my turn.