I participated in a webinar on caregiving and mental wellness yesterday and one of the stories the presenter shared really struck a note with me. She had worked with a gentleman whose wife of more than 40 years was diagnosed with Parkinson’s Disease. The husband took on the role of primary caregiver. At the point he met with a therapist, he was completely burned out. He had not looked for outside help because he believed it was his duty as her husband to provide for her. If he asked for help, he would be failing in his obligations. With the therapist’s help, he was eventually able to see that he couldn’t possibly do it all himself but it took some time and a lot of work.

Caregiving indicates a one way street which is why I prefer the term CarePartnering. We are travelling this road together and in many ways are caring for each other. My husband is able to understand and accept that my health matters too, which I am very thankful for. He actually said to me last night, “if we wear you out, how will we get anything done?” This shared concern for each other helps me stay grounded and allows me to continue providing the care he needs out of love, not a sense of duty.

If I have an obligation to him, it is to make sure he is getting the best care he possibly can whether that is from me or the other people working with him. I don’t need to do it all alone, I just need to make sure it happens. There are things I do that I would rather not, but I do them with a heart full of love not as a duty. That allows me to keep on smiling through the tough tasks I get to do and step back when it really is better to let someone else take the lead. Caregiving is a job I never would have chosen to do. CarePartnering has become my way of life and I always do it with love. It makes a big difference.  

I have been writing about my journey for several years now and I wanted to step back and revisit something I probably don’t say often enough. These words reflect my life as a CarePartner and tell my story, and may not be relevant in yours. And that’s okay. The challenges I face are going to be different from yours simply because the trajectory of my husband’s disease is different from that of your loved one. Please know that answers that work in my home are only shared as suggestions and I fully recognize that just because they are helpful to me, they may not be for you.

I often repeat the saying that “when you’ve met one person with Parkinson’s, you’ve met one person with Parkinson’s” that reminds us everyone’s journey with the illness is unique based on their situation, physiology, and so many other factors. I think we also need to say “when you’ve seen one CarePartner in action, you’ve seen one CarePartner”. There are some universal challenges, things like loss and exhaustion, but our responses to the day to day work we do are as varied as the symptoms our loved one’s display.

I really appreciate having the opportunity to share my story here and hope that some of you can find it useful. At the very least, I hope it reminds you that we are all in this together and we can support each other without walking exactly the same pathway. I don’t have all the answers, I don’t even know all the questions. Then, just when I think I’m getting a handle on things, Parkinson’s presents us with a new challenge. Perhaps it’s something you face on your journey and you might have suggestions for me? Maybe through all of us sharing our stories we will be able to figure this disease out someday. Wouldn’t that be nice?

My life has gotten a bit busy and complicated lately. My husband is working through challenges with vertigo and lower back pain which has meant a lot of extra appointments. We have contractors working on our laundry room to make it more accommodating. My son is having problems with my teenage grandson and today he reached out to say he is having to put down his dog. Then, there’s the heat. It is the middle of summer so that should be expected but it always means additional stress on all of us.

When I try to face all of these challenges at once, I quickly get overwhelmed. I am working to compartmentalize or put each of these separate components of my life into their own boxes with my husband’s box, of course, being biggest. I can take them out and deal with them as needed. Choosing to take care of different issues allows me to utilize different skills and gives me a sense of some control over most of the situations. Even if I am the only one who can see the boxes, it helps me keep my sanity when I can think “not now, I’ll deal with you in a minute.”

I saw a great quote on my computer yesterday from someone named Jeremy Clarkson. It read “Multi-tasking is the ability to screw everything up simultaneously.” This is so true for me and especially applies when dealing with difficult situations. I need all my focus to properly care for my husband, respond to my son, and deal with the contractors. Using boxes to sort the different challenges gives me that necessary focus and allows me to be here for all of them when they need me. Now I just need to create a box for myself!

I have written about this in the past, the need to have boundaries so that I am not trying to take on too much. I mentioned boundaries with my husband, boundaries with my family and friends, and even boundaries with myself. It sounds like such a good idea, but how do I put them in place and how on earth do I maintain them when things start going haywire?

I was discussing this with my therapist at our last appointment and she gave me a wonderful tool, a list of 16 actual statements that I can use verbatim when I need to set or enforce a boundary. It starts with “I can’t do that, but I can help you find someone who can” and finishes with a simple “no”. Even if I don’t use the exact phrases, just having them available to review is empowering. When I’m struggling to hold strong, envisioning “I can’t take on additional responsibilities right now” or “I wish I could, but I can’t” is a great reminder that I don’t have to always say “yes”, even to my loved one.

I keep some things posted above my computer and this little list is going to be added. I think it’s going to come in very handy when I am faced with a choice and know what I need to say but don’t have the words. It may seem scripted, but maybe it’s a script I need for those difficult moments.    

I am dealing with a head cold this week, stuffy, runny nose, watery eyes, sinus pressure and pain. At first I thought it was allergies but I don’t normally have that problem. As my symptoms increased, I tested for Covid and it was negative. I tested again a day later just to be sure and got the same results. Nope, I just have a plain old summer cold, and somehow those always seem to be the worst.

I googled “best home cures for a summer cold” and found that I need hydration, rest and over the counter meds. I can do the hydration and the meds, as long as they don’t interfere with caring for my husband, the resting part may be a bit more difficult. Which brings me back to the question that is always in the back of my mind, if I’m incapacitated, who cares for my husband? Heck, who cares for me? The other thought that always surfaces is that it’s a good thing he is the one with the chronic illness because he’s a much better patient than I am. No matter how bad he is feeling, he is strong, resilient and keeps a positive attitude. I, on the other hand, have been whiny, cranky and complaining all week about not feeling good. I don’t know how he puts up with me.

The answer appears to be that we both always do the best we can. Thankfully, meals are covered because I have leftover food in the freezer that I can easily heat up. I am tackling household chores at a slower pace and letting some things go. My husband recognizes that I am feeling under the weather and is understanding if I am not as attentive or even tempered as usual. Finally, I lower my expectations to meet my abilities and we keep on going, what other choice do we have? And I need to remember, this head cold won’t last forever, it just feels like it in this moment.

I always thought that the reason I need to go to medical appointments with my husband was to share my perspective with his doctors. I wanted to make sure they were getting a full picture of his symptoms. I realized recently that it also is a way for me to keep up with where he is on his journey because they know the right questions to ask and he often tells them things he hasn’t mentioned to me. I think he doesn’t always tell me everything about what is going on with him because he doesn’t want to add to my worries. It is not at all unusual for me to learn something new during visits with his medical team.

It used to upset me. How on earth could I help him with challenges that I didn’t know about? I realized that maybe he didn’t want or need me to fix those things, instead he wanted to try to take care of them himself. I have a tendency to jump in with both feet and start making suggestions, looking for interventions that might help. I sometimes forget that this is his battle to fight, not mine. I must remember that he needs to be the one to determine when and where he needs assistance, not me. His first step might be talking to a medical professional and I need to be okay with that.

So, I make sure that I go to all his appointments even if it is simply to listen in on their conversations. I provide input when asked and when it is relevant, but not without first discussing it with my husband. I want to be respectful of the fact that this is his journey, his life, and sometimes that means shutting my mouth and opening my ears. I might just learn something that would help us both with our struggles.             

There are things I just can’t do. Then, there are things I can do but shouldn’t. Then, there are things I can do and just don’t have time for. Finally, there are things I can do, should do, and make a priority so they get done. More and more this last category involves finding people to help with the things in the other 3 categories. Since organizing things is one of my strengths, that works out well. I am good at finding jobs for other people to do, as my husband will tell you because he used to be the one who got to do them all.

This comes to mind today because I have a crew coming to clean and treat our roof for moss. They’ll be checking the gutter guards and cleaning those too. This all used to be within my husband’s control, which is surprising since he is afraid of heights. Yet he did it because it needed to be done and because I asked. When it fell to me, I tried cleaning gutters once and decided to make some changes. Hence the crew coming today.

When my husband was first diagnosed, we shared the work involved in caring for our home. Since then, most of that has fallen to me. I know that one person cannot easily or safely do the work of two which is why I have to be realistic about how many additional chores can be added to my list. If I am trying to do it all, none of it gets done well. If I am distracted by other tasks when I should be focused on my husband, I am not able to give him the care he deserves. It’s a delicate balance, but I know I would rather err on the side of working with him than doing home maintenance. Maybe it’s not such a difficult choice after all?

I wrote recently about a tip I picked up from a Davis Phinney webinar to replace the word guilt in my dialogue with the word regret. Saying that I regret my husband has Parkinson’s Disease and cannot do everything he used to, encourages me to let go of feelings of guilt around the fact that I don’t have the same limitations. It’s been difficult to make the change to my internal dialogues yet I think that it may be helping which makes me wonder, what additional changes could I make?

I think particularly about those words that I hear over and over in my mind. Things like disappointment in myself, frustration, crankiness and random thoughts around my capabilities, meeting personal needs and inadequate self-care. All this negative self-talk is destructive to my well-being. What if I found a way to define my thoughts that was kinder to me and better reflected what I am feeling? As an example, I wonder if instead of worrying about meeting personal needs and self-care, I try being more self-aware in each moment and respond in kind. Having an awareness that certain activities centered on me are necessary as I move through my day, and it’s all okay.

And those other words, getting rid of disappointment could open a chance to look for more realistic expectations. I am already changing capability to capacity because being able to do something doesn’t always mean I should tackle it unless I actually have the time or energy for it. What if I took a minute to redefine the frustration and anger I often feel as bewilderment, why is this happening to us? And that good old crankiness that happens sometimes? Say what it is, I’m usually either hungry or tired, then do something about it.

Determining where those negative feelings about myself are actually coming from can let me short circuit those signals. I am always doing my best in this role of CarePartner and I need to acknowledge that even when I am only talking to myself.

I had what I can only call an “angry” day recently. I don’t know what brought it on and, at the time, didn’t know how to change it. What I did know is that I needed to do my best to keep it to myself and not take it out on my husband. Even if the anger might have somehow been related to something he had or hadn’t done, unless I could define what was causing it, I didn’t need to share it with him. Unfortunately, that is easier said than done. The anger inside was constant and flared into every interaction we had. It didn’t involve cruel words or loud voices, but my answers were curt and my mood remained dark for most of that day. My husband recognized it and steered clear of the stormy waters.

Looking back I can see that my anger was probably caused by lack of sleep. I had two or three restless nights leading up to that incident. It was also one of the hottest days of the summer so I wasn’t able to go outside and take a break. We’ve been dealing with extra medical concerns for my husband which always brings added stress. We’re getting ready to do some work on our house, again added stress. There were a lot of potential causes and it all just piled on and had to go somewhere.

Thankfully I recognized my toxicity and was able to keep my distance for most of the day. I was there when my husband needed assistance, otherwise I let him be. I wrote in my journal, which released a bit of the tension, and spent a lot of time reading, isolating myself and allowing the anger to try to work itself out. By the time we went to bed, things had calmed and I was able to get a good night’s sleep. I woke to a fresh spirit, ready to face the new day with a calmer and happier attitude. Angry days will happen, hopefully not too often, and my best approach appears to be to accept and let them work themselves out. My primary role may be CarePartner, but it’s important to give myself the grace to just be human sometimes too.

When my husband was first diagnosed with Parkinson’s Disease, I started hearing about this team we needed to create to support him. We were told his team should include a medical doctor, a neurologist, a speech and language pathologist, a physical therapist, an occupational therapist and even a social worker. I expected this team of professionals would come together in a room and discuss my husband’s diagnosis with us, I couldn’t have been more wrong. The reality is that he needs to have access to each of these specialists, but expecting them to communicate regularly about his situation isn’t reasonable. His team members are there when he needs them, but not all the time.

This team of professionals has the task of providing care for my husband, they’re not here to support me. I am considered a resource of information regarding his condition or perhaps a helper they can recruit, not an individual facing challenges who might also need consideration or assistance. What I have determined is that if I want to ensure my needs are meant, I must design and create my own team. I have to define who, professional and otherwise, will enable me to keep going in my life as my role of CarePartner becomes more intense.

It took me years to figure this out, but now I feel I have a pretty good team of my own. It includes my primary care doctor, my mental health therapist, a yoga instructor who helps keep me calm and fit, my family who are always here for me, even the people who help with lawn and home maintenance. The most important component is the support network of friends I have found within the Parkinson’s Community. They are here for me whenever I feel like I am struggling and give me the strength to face each day. Just as my husband shouldn’t be facing his journey alone, neither should I. Now, thanks to this amazing team of people, I won’t.