This word has been sitting on my mind lately. What does it mean in a Parkinson’s driven world? What exactly is it that I am looking for clarity about? Do I want to know what’s coming next or simply understand what is happening right now? Is it clarity about how to deal with what my husband is facing or what I am facing as his disease progresses? His meds can sometimes give him something he refers to as a foggy brain, this diagnosis gives me a foggy everything.

If only I had a better handle on what comes next, I could feel more in control and relax into my role of CarePartner. The uncertainty of my husband’s diagnosis keeps me guessing from day to day, even from hour to hour. I make plans for shared activities knowing they depend on how his day is going and may be canceled at any time. Our lives have become very flexible out of necessity. Plans for myself are also somewhat limited because I can never be sure he is going to feel well enough to be left alone so I can I go out even for just a few minutes.

Clarity even comes to the basic question of why us. Why do we have to walk this difficult path? It was not on either of our radars, and certainly not something we would have chosen. Was there something somewhere that would have led to a different outcome? If we could know the why, perhaps it would help us accept the reality. And perhaps that knowledge could keep others from facing these challenges in the future. For now, I simply keep fighting through the fog and hope for a good day. It’s all we can do.

For me that escape comes from writing. I thought today I might share a poem I wrote in honor of Parkinson’s Awareness Month. I hope you like it.

They found a Cure Today

They found a cure today
Parkinson’s Disease is history
My husband’s body won’t tremor anymore
He’ll be free to walk without aids
He won’t need medication six times a day
I can be his full-time wife again
instead of his caregiver
We can forget chronic illness and look for relief
We’ll turn back the clock
As we take trips to exotic places
We have dreamed about for years
Instead of Doctor’s Offices
We will go dancing at wineries
Instead of visiting Physical Therapists
Entertain family and friends
Instead of sitting alone at home
We can rebuild our lives
If only they actually had
The wish sustains me

I am learning more about my husband’s journey with aging and Parkinson’s Disease every day. I didn’t understand some basic challenges my husband was facing until they were called out to us. I didn’t realize that, back when he was showering himself, there were parts of his body he couldn’t reach to properly clean. We were being interviewed by a nurse evaluating his need for assistance when she asked who washed his back and feet. It was an “aha” moment for both of us.

In a more recent encounter with a speech and language pathologist, we were told he had a lump on the back of his tongue. I bought a tongue scraper and started helping him with his oral health twice a week and it seems to have gone away. The foot nurse who trims his toenails complimented my husband on his excellent foot care. He mentioned that many of his patients have fungus growing between their toes and other foot conditions from poor hygiene. I guess we’re doing something right.  

Dry skin is a constant with Parkinson’s and I am able to keep an eye on it when I help him dress. His caregiver trims the hair in his nose and ears and alerts me to any possible problems there. Parkinson’s impacts so many of my husband’s usual capabilities that only by working closely with his care providers are we able to make sure everything gets done. Especially those things he may not think of himself.

My husband and I used to split the chores on a mostly even basis. He carried much of the outdoor or heavier tasks and I picked up many of the indoor chores. We worked together and helped each other often to make sure everything was done. As his disease progressed, things changed and I found myself taking over, leaving him to do less and less as each year passed. I recently realized that perhaps I took on too much because I often exclude him completely from tasks and that isn’t appropriate at all.

We recently took on a home repair project and I started taking control. I heard myself talking about my house and the changes I wanted without considering that my husband should have input. Especially since the repair involved the garage, an area that contains many of his personal items and memories. We chose this house together and have paid for it together. It is our home, not mine, and I need to respect that.

I stepped back and opened a discussion about the work that needed to be done and ways for him to help. We set up a chair and table in the garage where he spent an afternoon sorting his tools. We went together to take a load of things to the hazardous waste site and he has been a part of most conversations I am having with the contractor. As a pleasant and unexpected result he has begun helping me with other chores, folding laundry, putting dishes away, making the bed, things we used to do together. While doing tasks together may take a bit more time, it also strengthens our relationship and reminds us of who we are. Sharing the load always makes it lighter.

PD Awareness month may seem like a fundraising ploy for the many foundations working to find a cure. And if it is, maybe that’s okay. But perhaps it can be more than that. What I have done in past years is write letters to the editor, posted articles on Facebook, and generally attempted to spread the word about what Parkinson’s Disease does so members of the public could better understand the impact it can have on someone. This year I think I’m going to take a more personal approach.

As my husband’s diagnosis progresses we are not out and about with friends like we used to be, we don’t spend as much time with family or take those daily walks in the neighborhood. PD is a very isolating illness, but that doesn’t mean we don’t still need and value those connections with others. PD Awareness Month is a great excuse to let people know that we’re both still here and ready to engage, whatever that might look like now.

I think my goal this year will be to give those we know personally outside the PD network an awareness of where our journey with Parkinson’s has taken us. Also that we are still here, still fighting, and we both still appreciate their concern and love. If they are moved by what they see in us, they can also make a donation to one of those bigger foundations. After all, it’s going to take support from all of us to find a cure.

We have been in a holding pattern for the past month while my husband has undergone minor surgery to replace the battery in his Deep Brain Stimulator. The procedure required an incision on his chest which had to heal before he could resume many of his activities. It has meant a bit more work for me, but not that much, and has actually given us both a break from the Parkinson’s based routine that our lives had become. Now that we are coming out of this all we are trying to figure out what we want our daily lives to look like and what they really need to be so that we can both survive and thrive.

It has been years since we actually did something like this, took a moment to discuss whether the treatment plan he was following was working and realistic. One of the first things I had to tell him was how much I enjoyed the past couple of weeks without having so much PD structure. Let me explain. My husband takes the “exercise is medicine” concept seriously. He has been working out either in person or virtually 6 days a week, usually an hour at a time. Three of those days involved my driving him somewhere and I participated alongside him through zoom classes for two of the other three. After working-out, he needs at least an hour to recover. Considering that all of these classes happen midday it really means that we are not able to do anything else. We have let his PD take control of our lives.

As we continue to look forward, I am asking him to consider the optimum exercise regime and how he can make that happen for himself. I will look honestly at how much I have to give, how much I am truly able to participate, keeping in mind other tasks in my day. Then I am going to hit him with a flexibility ultimatum. We need to be able to take a day off now and then to de-stress and enjoy life. Otherwise, Parkinson’s Disease has won the battle.

My husband’s capabilities have changed over time. Granted we have been on this journey for almost two decades and things would have changed regardless of his diagnosis. There are lessons I learned about nutrition and PD early on that still have relevance but that have become almost impossible to utilize. Swallowing issues, taste issues, chewing and manipulation of food in his mouth, the process of getting food to his mouth, all of these factors play a part in what he wants to eat. And if he doesn’t like the food or can’t manage it, then what’s the point in my making it anyway?

Most often we hear that a Mediterranean diet is the best choice. The recommendation is lots of salads, seafood, chicken, and a little red meat. So I bought the cookbook and started moving our meals in that direction years ago. However, as I mentioned above, my husband progressively struggles to manage eating fresh vegetables and salads need to be chopped so finely it is almost time to get out the blender. He doesn’t like fish, so that is off our table. My choices for meal prep are becoming less about what he should be eating and more about what he can eat safely.

We sit down together once a week and plan our meals before I go shopping. We talk honestly about what works and what doesn’t. I try my best to accommodate his dietary needs, always considering his physical capabilities while providing healthy alternatives. I keep in mind that I am going to be eating too and my preferences get to come into play occasionally. My journey as his CarePartner continues to be a learning opportunity in adaptability. 

My concept of self-preservation, or self-care as some call it, means that I must find time to breathe. Accomplishing that isn’t always easy but I have a few things that work for me including workarounds for difficult tasks and asking for help on things I really shouldn’t be doing myself. I make the time to do things right the first time and own the fact that my health and happiness matter as much as my husband’s. I recognize when I reach my limits and stop whatever it is to take a break. I understand the importance of putting my needs first.

Practical things involve stepping outside, regardless of the weather, and taking a few deep breaths. When facing a new task, I take a moment to consider what might be the best approach rather than just jumping in to get it done. I don’t try to do everything my husband did, we have different physical limits and I don’t want to hurt myself. I accept that there will be things I can’t or don’t want to do and reach out for assistance. When I need a break I take it and if it means a task has to wait for another day, so be it. I make time to do things I want to do and sometimes that is simply sitting down to eat a donut, one of my favorite treats.

Life is too short and too important for me to let Parkinson’s completely take over. As my husband’s symptoms fluctuate, my challenges will too but that doesn’t mean I can’t still find ways to live a full and meaningful life. Some days that fullness may be mostly taken up with caring for him, but I will still find time to take care of me because if I’m not okay, he’s not going to be either.

My husband appears to be in sloth mode today, everything with him is in slow motion, whereas I have things that need to get done. Standing by and watching him struggle with tasks that I can do quicker and easier is driving me crazy. But I know that whenever I start doing something for him, it takes away from his abilities to care for himself. I want to be patient, but some days are simply harder than others.

The “Brady” twins are targeting us today. That’s bradykinesia and bradyphrenia, or slowness of movement and brain functioning. My husband openly states that he can’t do more than one thing at a time and that one thing must be done at a snail’s pace sometimes. Parkinson’s has decided his brain is going to process commands more slowly and the messages move through his body more slowly and finally he must follow each one in detail. I feel for him because it’s definitely not his fault he no longer has autonomic movement making everything he does challenging.

Which brings me back to my dilemma, finding patience on a sloth mode versus long to-do list day. First step, I take a deep breath and re-evaluate the list taking off anything that isn’t a priority. Second step, I must take care of anything that needs to be done with or for my husband. Third step, help him get him settled somewhere and go to work with whatever time and energy I have left. Fourth step, it’s time to celebrate what did get done and take a rest after another successful day in PD land.