It’s 12:30 am and the kitchen is calling, “Come join me. Your husband’s safely asleep, it’s just you and me. I’ve got some lovely almond milk you can enjoy alongside a piece of toast or fruit. Come on out, it’s time for just you.” Okay, my kitchen may not actually speak to me, but the peace of the night certainly does.

I used to be bothered by what I thought was insomnia before I realized that it is an opportunity. There is a time in the middle of the night when I can let go of everything. The house is all mine, I can enjoy it without worry or stress. I may have a light snack, read a few chapters in a book or sometimes I write. Whatever I do, it is all about me. I am not up every night, maybe once or twice a week, but it is enough.

To a non-CarePartner this may not make much sense. During the daylight hours, when my husband is awake, I am on constant alert. I live in a state of “what if” staying close and listening to make sure all is well. In the midnight hours, I can relax knowing that he is safe in bed which gives me a sense of freedom. These times are my midnight moments, times I have learned to treasure rather than fight. A bit of unexpected “me time” that I share with only my cat. I’ll take it.

I learned a lot about being a CarePartner from our dog. He was a great companion and loved unconditionally. He was always present in the moment and ready to share in whatever we were doing be it a walk or a nap. When times were rough, he was close by with a lick or belly rub. He reminded me of the importance of playing every day and gave me a reason to get out and walk. His energy was infectious, and he shared it willingly. When he finally wore himself out, he stopped and rested. His life was simple, his needs basic and innate. If only I could live more like that.

As he aged, he taught me more lessons about accepting limitations and loss. Our walks were first to go when he developed arthritis in his back and hips. He no longer met us at the door as his hearing and sight were impacted. Play times were gone and he spent most of his days sleeping. When he started to lose control of bodily functions, we realized it was time for us to say goodbye, his final lesson for us. Losing him was difficult as we move through grief into acceptance and gratitude for the joy he brought into our lives. 

It may seem inappropriate to talk about our dog when writing about Parkinson’s Disease; I am not comparing, simply recognizing the contributions he made to my journey. We won’t be getting another dog now, we have a cat and our lives are busy enough without adding another pet. I am very grateful we had our time with him and for the lessons he taught me. He will be missed.  

I had the opportunity to participate in an event called Caregiver Christmas for the second year in a row. This is a drive through program presented by a local non-profit honoring and thanking family and paid caregivers for the work we do. It is the only event I know of that recognizes me, not because of my husband’s disability, but because of my work as his CarePartner. It is a very heartwarming and emotional experience.

My tendency is to underplay the work I do whether it is helping him with his shoes and socks, coaching him while he exercises or accompanying him to his appointments. I have assumed all of the housework and am the primary connection with all of our community supports. When I actually stop to look at the things I am doing it may not seem like much because it has evolved slowly, but there is always something more to be done. I keep our lives running smoothly and that is essential.

On top of the care I provide for my husband, I also try to sustain others in my Parkinson’s community through my blog and my engagement in local support groups. I work within our greater community volunteering in a local museum, another role I tend to undervalue. I was named their “Volunteer of the Year” and didn’t attend the meeting to receive the award because I couldn’t believe I had earned it. Much of this work is done under the auspices of self-care yet I need to acknowledge that it carries value nonetheless.

I am very grateful to the people who coordinate the Caregiver Christmas event because it makes me stop and reflect on what they are saying. I was about halfway through the event when their words finally sunk in and I started to cry. I am important and what I do matters, not because of my husband’s diagnosis but because of my response to it. Maybe someday I’ll fully understand that it is okay for me to accept the gratitude of others because what I do has value and I deserve it.

I did it again. My husband has a video appointment with his doctor this morning and, while helping him get ready for it, I was bossy and grumpy. The doctor’s office texted a link for the meeting to his phone. He asked me to contact them because we don’t want to do the meeting on his phone. I asked him, politely, whether he had checked email on his computer in case they sent it to both devices. We found the link and accompanying instructions in his spam folder. This is where things got a little heated.

I was frustrated by the slowness of his computer and grumped at him as if it were his fault. Then I criticized his system of email, he doesn’t use the on-line server but instead had to download the message to his outlook account. I struggled with how long it all was taking. By the time the email was open, I was itching to take over and do it myself. Thankfully, instead of taking over I took a moment and was able to help get him ready for the appointment without any further crankiness on my part.

I have tools I can use when I start to feel impatient. I know that it is better to be calm, use positive questions and suggestions rather than bossy directions, not let frustration form my actions. I started out okay this morning when I asked about checking his email, I then needed to step back and let him deal with things until he asked for more help. He was doing just fine getting things downloaded, it shouldn’t be an issue for me how he does it. Trying to take control of the situation when he was already engaged made it more difficult for both of us. I need to respect that he has a process that works for him and that he still has the capability to manage it. Ultimately, I need to recognize that he has his ways of doing things and I have mine and that both are okay as long as they get the job done, a concept that applies to so much in our journey with PD.

It’s a delicate balance and balance is one of my husband’s challenges. Pun fully intended! He has always been in control of his life and now this disease is forcing him to give up some of that and let someone else, namely me, make the decisions. It’s a role that I find I take on too easily. I freely admit that I like being in charge because then I know what is expected and have some control over outcomes. Unfortunately, where Parkinson’s Disease is involved, neither of us can ever have complete control. 

Figuring out what shared control means can change with the day. If my husband is having a good day, I can step back and let him be. He is perfectly capable of handling most things and will ask if he feels he needs help. Taking over when he doesn’t need it is disrespectful to him and a waste of my time and energy. However, if he is fatigued or stressed, then I need to be ready to step in. My challenge is being able to detect what is happening with him in time before it becomes a crisis.

I was just reminded of how this shared responsibility can work. His phone rang and, before I could get there, he answered it and was talking with his doctor’s office. I resisted the temptation to interrupt and take over the conversation. They confirmed his appointment for tomorrow and, since it is a video appointment, he asked the right questions so we know what to do. I listened in on his conversation so we both have the information and are prepared for tomorrow. Sharing control isn’t always easy but it is best for both of us at this point in our journey.   

My husband and I have the most interesting conversations these days. Words come out of my mouth that make me cringe. I think it would be upsetting if someone followed me around reminding me to “stand up straight” or asking, “did you take your meds?” This doesn’t include our discussions of bodily functions like constipation or all the other gastrointestinal complications of PD. There are times when it can feel like we’re playing tennis rather than communicating. I volley with a comment, he responds and then the ball bounces back and forth with “what did you say?”, “can you speak a little louder?”, “huh?”, before we finally drop the ball entirely and give up.

When I take the time to slow down and listen carefully, we do have meaningful conversations. We both like to read the newspaper and will find things there to discuss. We may read the same books and can talk about the plots or the characters. We talk about challenges we face around the house and brainstorm solutions. But, the key is that I need to be patient and fully engage. His brain still works, but it processes a bit slower. He still speaks, but the networks that control his speech are slower and words can get lost along the way.

There will still be those times when I want to encourage him to have good posture or need to check in to make sure he is following through on self-care, but I do not want to become his nursemaid. And, I want to make sure that those reminders are delivered respectfully and balanced with other topics so that we can continue to connect in ways that don’t involve bodily functions and meds. I fell in love with the man because of his intelligence and wit. Thankfully it’s still there, I just need to allow the time and support for him to share it.

I don’t always put my needs first, as a matter of fact I seldom do. I know the sayings- “caring from me is caring for him”; “I can’t be here for him if I’m not here for me”; “I need to put on my own mask first” (from every flight I have ever been on), and I am working on it. What are the obstacles to self-care for me? Initially I believed I didn’t have the time or couldn’t leave him alone. On some level I think I didn’t really believe I deserved it. After all, with all the appointments we already had, wouldn’t this just add more to my load rather than lighten it? I was so wrong.

I started out small, volunteering a few hours weekly at a local museum. It got me out of the house and gave us both a break from each other. My husband was fine at home alone and I was having new and different experiences. Recently, I added a yoga class to the mix. It is in-person and takes me out of the house for about 2 hours once a week. I make sure that my husband is set, he does a seated exercise class on his own while I am gone. We have been doing this for about a month and it is working out well for both of us.

The key to good self-care was actually committing to it and accepting that it is okay. I am deserving of taking time for myself. I also feel that doing something just for me takes some of the power out of his disease. PD can control our lives, activities outside PD push back against that control. I am setting patterns, expectations that I will continue to take care of me even as his disease progresses. When he is not able to be at home alone, we’ll look for help. Life can go on for both of us regardless of his diagnosis. 

I learned last night that another friend has moved away to be closer to family and that their Person with Parkinson’s is not living with them but in a care facility. I remember when my father’s disease had progressed beyond our capabilities and my mother had to make that difficult decision. I look at my husband and pray that we never reach that point.

It is difficult to be part of a group where, as my husband puts it, “People keep dropping off the cliff.” It sounds somewhat cold but that is the reality. Our friends who share this disease with us are progressing at different rates and in different ways. Their partners are being forced into making decisions none of us ever wanted. It can be a depressing situation especially knowing that we could also be there one day.

Then, I think about our friends who are doing well. We see people daily in our exercise group who are still “managing to cope,” my husband’s words again. I would say that they are actually doing better than coping, many are thriving in spite of the challenges of PD. They are here, fighting the fight and encouraging each other to keep on. Even those we have lost showed great courage while living their lives with Parkinson’s. There is much good going on within our PD network.

We will be faced with many hardships on our journey with Parkinson’s and may very well lose more friends along the way. I can’t let the difficulties and losses define us; I need to continue to live with a positive outlook. Our journey is unique, and we cannot know where it will end. I need to accept and enjoy what we have with the knowledge that wherever this road leads, we will always be travelling it together.

I participated in a virtual workshop almost a year ago given by our local Parkinson’s support organization, Parkinson’s Resources of Oregon and SW Washington (“PRO”), where they provided a tool entitled “Care and Backup Support Plan.” It is a document that allows me to fill-in blanks and create a plan in the event someone else has to step in and care for my husband. It covers everything from basic medical information to self-care to who is in his support network. There is a section to enter information about local organizations or facilities we have already vetted should he need care beyond our home. It is a great document and will be wonderful once I take the time to fill it all out. Which brings me to my point. It is still in my computer, half-done, and will do no one any good there. Any tool is only useful when you actually utilize it. 

He also has an Aware in Care kit, provided by the Parkinson’s Foundation, designed to take with him when he goes to the hospital or urgent care. It is another fantastic tool that has a lot of basic information about PD. It also has cards we can fill out that tell medical staff about his diagnosis and gives them breakdown of the meds and supplements he takes. He has had 2 surgeries and at least 1 trip to the emergency room since we got the kit and it hasn’t left the shelf in our living room once.

There are many other organizations who provide support documents to make our lives, and the lives of the ones we love, easier. I would love to have them and use them but, where do I find the time to actually fill them out? Then, the next challenge is keeping them current. Medications change, doctors change, needs change and the information we share must keep up with it all. Any tool only becomes helpful when you actually use it and when it is accurate.

I am working on ways to find the time to complete our Care and Backup Support Plan. I am also moving the Aware in Care kit to our car instead of our bookshelf. Perhaps we will never need them, but if we do at least they will be there ready to do their job.   

The word courage originates from the Latin word for heart “cor”. It is defined by Dictionary.com as “the quality of mind or spirit that enables a person to face difficulty, danger, pain, etc., without fear.”  We, I, must have a strong heart and spirit to face this debilitating disease that is changing my life. I must have the courage to live through each day knowing that it will eventually take my husband from me. But the real reason I am able to keep going on is the courage my husband shows. He is the true hero of this story.  

I am reminded of a quote from Mary Anne Radmacher, “Sometimes courage is the quiet voice at the end of the day saying, I will try again tomorrow.” Every morning my husband wakes up and struggles just to get out of bed. His legs are stiff and uncooperative, but they don’t stop him from rising and going outside for the newspaper before making his own breakfast. The fatigue, balance issues, mental fogginess thanks to his diagnosis don’t keep him from exercising on a regular basis. Nothing slows him down in his battle against PD. My situation, being his CarePartner, pales in comparison to the challenges he encounters. I am losing him slowly, but he is losing so much more. Yet he keeps on trying.  

I have been thinking a lot recently about my strengths and realize the greatest strength I have comes from my husband, from having his love. He inspires me, he empowers me, he puts up with me when things are not going well for either of us. He gives me reason to keep trying, to keep fighting. If he can continue with everything he is facing, then surely so can I.