I’ve spoken about this before but it’s definitely worth mentioning again, I need to take breaks in my role of Primary Carer. It’s not that I stop caring, it’s that I let someone else take over the hands-on stuff for a while. That used to mean leaving in order to completely let go, but then I didn’t get to the things I wanted to do around the house. So, I have decided recently that rather than stop being here physically, I simply need to stop being here mentally, which allows me to tackle my “want to do” list in our home.

Obviously, I time these mental escapes when there is someone else here to watch over my husband. I tell both of them where I will be. It may be that I am going outside to putter in the yard, or in the garage to tackle a project, or sometimes it’s just in the backroom to get things done. I ask them not to interrupt unless it’s an emergency. If I’m outside, it’s easy to forget about what might be going on inside. If I’m inside, I can close the door and put in earbuds or turn on music. Either way, I can distance myself from what is happening in the rest of the house.

Our in-home caregiver comes twice a week which gives me opportunities to practice this regularly. I know other CarePartners who have friends or neighbors come in and watch their loved one while they work on other tasks. And it doesn’t have to involve tasks, I used one afternoon to take a nap in the back room. This is also when I get a chance to write, both this blog and other creative projects. I create boundaries around my safe time and space and stick to them. Thanks to these breaks, I am able to provide better care for my husband and am reminded of who I can be outside our world of Parkinson’s.

One thing I didn’t realize in those early days was that just because something works for now, doesn’t mean it’s going to work next year, next month, heck even next week. When my husband was first diagnosed, he was still very capable of caring for himself and participating in activities. He belonged to a local gym that he visited twice a week. We were both still working and, after work, he would take our dogs out for walks everyday. My husband was able to help with meal planning and often helped me in the kitchen just as I did with outside tasks. It was very much a 50-50 partnership.

As his symptoms started to progress, there were some things that needed to change in our routines.  When he couldn’t take himself to the gym anymore, we started exercising together. Neighborhood walks became a shared adventure and have now become a rare occurrence as his illness progresses. We are still able to do meal planning and grocery shopping together most of the time, but none of these things look like they did in those early days. Being in the shower together was once an intimate experience, it is now simply a necessary part of every day.

Parkinson’s is a thief. It steals the life from my husband a little bit at a time. It also steals my life and our shared activities. The one thing it can’t steal is my love for this man. I can adapt, I can adjust to the new realities of our lives together, and I can be here for him. I completely share in his journey with PD regardless of the changes and challenges we face because I love him and because I know he’d do it for me if our roles were reversed.

I always try to do what’s best for my husband and yet still I often feel like it just isn’t enough. That’s when I let guilt begin to play in my  head. I feel guilty that I got grumpy with him yesterday, I feel guilty when I can’t understand what he is trying to say to me, I feel guilty that I didn’t stop him from falling last week. I think the reality beneath it all is I feel guilty that he has this disease and I don’t. Then I stop, take a breath, and remind myself that I am always acting with best intentions. It is going to look different based on the day and how we both are feeling, but I can’t do any more than that and shouldn’t feel guilty about any of it.

I know my husband sees me trying to be a good CarePartner and understands that sometimes I am just not able to do the right things at the right time. He knows my heart is in the right place and accepts any missteps as learning opportunities without placing fault or blame. He is patient, loving, kind, and lets it go, setting a great example for me.

Self-compassion is one of the most valuable tools in my toolkit. I am good at not blaming my husband for the challenges he faces but it is more difficult for me to accept my own challenges. I have never been in this role of primary CarePartner before, yet I expect to have all the answers and to do everything well. I can’t. I am only human and will make mistakes along the way. As long as I learn from them and keep on trying, then it’s a valuable experience for both of us.

A recent 10 year study of general practice patients in the UK indicates that a new diagnosis of anxiety may be an early predictor of Parkinson’s Disease. The researchers looked at almost 1,000,000 different files and found that those people over 50 who were newly diagnosed with anxiety were twice as likely to also be diagnosed with PD within a 5 year period. Which makes me wonder whether those early symptoms all of our loved one’s show might be the cause of the anxiety?

In my husband’s case, we knew something was going wrong for several years prior to his official PD diagnosis, but his primary care doctor kept calling it “just a tremor”. He didn’t become anxious but was curious as to why this supposed tremor kept getting worse and was impacting more of his body. The same thing happened with my father 40 years ago. At that time his PCP simply said, “I should have seen this sooner.” Will this new information help general physicians understand the potential for PD better and recognize what they are looking at when it first presents itself?

I am not sure that an earlier diagnosis would have made big a difference for us. It would have been nice to have an answer and perhaps get treatment in place sooner. When my husband finally was referred to a neurologist, the specialist took one look and asked how long he had been diagnosed with Parkinson’s Disease. He was surprised to learn that my husband hadn’t. During the next 20 minutes that changed our lives forever, he was diagnosed, given a prescription for carbidopa levodopa and sent on his way.

My loving husband still doesn’t present with anxiety, I tend to be the more anxious of the two of us. After reading about these findings, I just hope that my anxiety is tied to his diagnosis of PD and not an upcoming one of my own.

This study can be found online at Risk of Parkinson’s disease in people aged ≥50 years with new-onset anxiety: a retrospective cohort study in UK primary care.

I see my husband struggling to do something and I immediately think there has to be a better way. My brain starts working to find a modification before I even realize that he has already moved on from the task. He figured it out on his own without my intervention so I should let it be, but often I can’t. Once my “fixer” mentality sets in, I am focused on a mission. When I find what I consider to be the perfect resolution, I get frustrated when my husband doesn’t seem excited about it and often won’t use it. What’s wrong with him? Why doesn’t he appreciate my help with this?

There is something wrong, but it’s not with him. The problem is, even though I am trying to be the best CarePartner ever, sometimes I am disrespecting his ability to find his own answers. I jump in to fix issues that aren’t problems for him. I let my own perception of the situation take control and then wonder why he doesn’t want to accept my solution. Once again, I’m fixing things that aren’t broke.

In those moments when I feel start to feel unheard and unappreciated, it’s time to step back and really look at what I am doing. Am I not being heard or am I not listening to him? Has my husband asked for help with this particular problem or am I assuming he needs my help? Is this really a challenge he wants me to fix or can he manage without my intervention? Who’s cares more about fixing this issue, my husband or me? Finally, is this really a good use of my time and energy or should I just step out of his way and let him be? I know the correct answers to all of those questions, I just need to resign myself to them.

One of the first entries I ever wrote in this blog was about exercising. It started with “We both need to take care of our physical needs, and that means exercise and healthy eating, so that we are always battle ready.” I didn’t realize at the time just how true those words would prove to be.

My husband needed to exercise to slow the progression of his disease. I now know that my need to exercise was not to maintain, but to build musculature so I would be able to manage the many new duties I am asked to do. Besides the extra tasks around the house, I need strength to lift, load and place the equipment we use every day. It was easy when all he needed for mobility was a cane, now it’s a walker and will someday be a transfer or wheelchair. Hefting those things in and out of the car isn’t an easy task but is made better because I have been working out with light weights and resistance bands. That doesn’t even take into account the other accommodations I handle regularly like bedrails, transfer poles and shower chairs.

I like to think of my role as his exercise coach, but the reality is that I need it perhaps more than he does these days. It takes strength, stamina, and fortitude to make it through without injuring myself. I may complain about working out, yet I know that I need it. I find I usually have the capacity and the ability necessary to meet any challenge thanks to all the effort I have been putting out over the past few years.

I heard a lot early on in this journey about creating a team and building your support network including family and friends. The reality is that our children are all working and have very busy lives, they can offer support and occasional help but don’t have time to come in on a regular basis. Most of my friends are also my age and facing similar challenges in their lives, they don’t have the time or the energy either. Thank goodness there are people who are willing to do this difficult work as paid caregivers and thank goodness we have our insurance that covers it!

We have been working with a local agency for about a year now and are on our second caregiver. The first one was adequate, she would come in and be with my husband, which allowed me to get out and take care of business or just go out and take a break from time to time. It was such a relief to know that I could leave the house for a few hours and he would be safe. As time went on however, I realized that we needed more than she was capable of giving. We now have a different caregiver and he is wonderful. Beyond being here with my husband, they have conversations, take walks in the neighborhood, and he does more household chores than I ever expected. This young man has fast become a vital member of our team. I cannot say it enough, if you have insurance coverage, don’t be afraid to use it. If you don’t, look at alternative options and take advantage of them. Those regular breaks, even for just a few hours, make me a better CarePartner and help preserve my mental and physical health.

My husband is a smart man. When we met and married, he knew that the day might come when one of us would need more care than the other was able to provide. He insisted that we sign up for long term care insurance when it was just becoming a thing, and it has proven to be a very good decision. I always felt we were betting against ourselves and our abilities to care for one another, he had a better understanding of the possibilities of aging and disease. Thanks to his wisdom, we’re both able to get the help we need now, I cannot thank him enough for that.