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.

I wasted so much time over the past couple of months worrying about my husband’s need to have his DBS battery replaced. When would he get the surgery and would it be before the old battery completely died? What happens if he doesn’t? What if there are complications to the surgery? Once he was finally scheduled, I worried about how we could get to the hospital at 5:30 am for a 7:30 procedure and where we would park? Some of the early apprehension may have been understandable, but as the situation carried on for a couple of months my concerns really became ridiculous. I mean letting where to park keep me awake at night, seriously?

The day of surgery arrived and I was still quite stressed but determined to just push on through, which we did. Out of bed at 4, out of the house by 4:45, arriving at the hospital at 5:15. We found a Handicapped Parking spot just waiting for us in front of the main doors. Everything at the hospital went well, especially the surgery, and we were on our way back home by 9:30 am.  

The lesson I am taking from this experience is that I shouldn’t doubt my capacity nor my capabilities as a CarePartner. All those worries were based in fear of the unknown. I was letting my imagination run wild with “what ifs”. Yes, there was a chance that his battery could have died while we were waiting but we would have handled it together. It was a challenge getting up so early and yes I was concerned about parking at the hospital but these are all things that I handled on the day. They did not deserve the amount of time or space I gave them in my thoughts. I need to trust that I am able to meet the challenges each day brings. It’s time to focus on positive activities that help me manage, not negative worries that simply add to the burden and stress. 

Another friend from our Parkinson’s network passed away this week. I am sad for the loss but grateful for having known him and his lovely wife. And, if I know anything about them at all I know that they would not want us to grieve, but to use this as a reminder to live each day as fully as we possibly can. As my husband says, we are all going to die one day whether we have PD or not. Let’s not waste time worrying about what is coming and instead use our time enjoying what we are given today.

Possibly the only positive thing about our journey with Parkinson’s has been finding a community of new friends in this same situation. Reaching out for support gave us the opportunity to engage with an entirely unique group of people we never would have met otherwise. PD doesn’t discriminate by race, gender, ethnicity or political leanings, it’s an equal opportunity affliction. It’s a natural version of diversity in action.

I have spoken before about how grieving is a basic component of my CarePartner journey. Perhaps it’s because I see little losses every day that are moving my husband closer to the inevitable. Or perhaps it’s fear of the unknown, if I do outlive him, what will life look like after? I am reminded that focusing on what may come takes me away from appreciating what I have now. I can hear the many friends we have lost and their CarePartners telling me “Live life in the now. The end always comes too soon.”

It was at a Parkinson’s support group that I first heard this statement regarding the medical challenges people with PD face and it is so true. Once someone is diagnosed with a chronic illness, that should be enough. Take my husband for example, dealing with Parkinson’s should be his one thing, but it never is. Granted this diagnosis doesn’t eliminate the aches and pains that come alongside aging nor does it serve as a barrier to seasonal allergies or viruses. And it increases the risk of injuries from fall so there is always more than one concern as we travel this journey.  

The more health challenges he is facing, the more work it means for me as his CarePartner. There are additional appointments, medications, worries. There are emergency trips to the drug store for supplies and calls or messages to his medical team. Any physical changes in his body usually make his Parkinson’s symptoms worse which can mean that he needs more attention and more support with activities of daily living. When he gets sick on top of his baseline of PD, it always means my workload increases to match whatever new level of care is necessary. When he gets better, it doesn’t always go back down.

They say that people don’t die from PD, they die with PD. We have seen this many times as friends contract covid or pneumonia, injure themselves in a fall, go into the hospital for what should be a treatable illness and the PD complicating factor means they never come home. It truly should be only one health challenge at a time and his should be his diagnosis of Parkinson’s. That’s more than enough for both of us to deal with.