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.

We hosted a family get-together yesterday. Normally I let these events stress me out, but this time I decided to take a more casual approach and it worked. We had a chili feed so all I needed to make was a huge pot of chili and some corn bread. It was our immediate family, and they know me well, so I decided that deep cleaning the house wasn’t really necessary. Most of them have lived with me at some point so they know my standards and should be comfortable with them. Finally, I set things up and let them run instead of trying to control it all. The food and drinks were out, from there I let the evening flow. It was great fun to see everyone and hear what was happening in their lives. The best part was that my husband was an active participant. I believe he enjoyed the event as much as I did.

We are coming up on the holiday season. My hope is that we can continue with the monthly get-togethers instead of the big holiday bashes. The goal for me is simply for my husband and I to share some time with the ones we love. It works for our kids too because it frees them up to create their own celebrations. The bonus is that we have a set appointment each month that people can plan around. If someone can’t make it this month, well we’ll see them next time. It gives us all the opportunity to stay connected beyond the holidays in a fun and loving way.

I get tired of having people tell me to take care of myself, yet I know they are right. I especially get tired of hearing that mindfulness is the way. I think that we all have to find our own comfort zone and for me it’s writing. I have been journaling daily for five years and writing this blog for three years. For someone else it might be meditation, photography, painting, cooking, or gardening. Whatever it is that gives you that feeling of relief, of accomplishment, of joy, do it!

It can be challenging to make time to do anything for myself. I usually write while my husband takes his shower in the mornings. Thankfully he is able to manage alone but needs me close. I do help some when it’s time to get dressed, but that only takes a few minutes. Once he’s ready, I can get a little more time for myself while he rests or works on his computer. He takes afternoon naps which give me another great opportunity for me to sneak in some writing. Using any open time for things I like to do rather than chores makes my day go so much better.

I hope that all of us have something we do that gives us peace. It doesn’t have to be anything grand or time consuming, even just a cup of tea or coffee in a quiet spot can be relaxing. Writing serves as a release valve for tensions and a constant companion for me in both good and bad times. I want to encourage you to uncover your release and find time daily to do it. Be persistent. We all need those breaks and can only find them if we look.

Parkinson’s is a horrible disease that takes a bit more away from my husband everyday. There will come a time when I need additional help beyond what our current medical team can offer. I need to know what supports are available to us as we struggle and understand what each of those mean. I have heard of palliative and hospice care and want to arm myself with information so I can make good choices when the need comes. What are the differences between the two, when should I be looking at them, how do I make sure it is the right decision?

We hear a lot about palliative care and how it can be helpful at any stage of my husband’s illness. I really don’t think I have a good idea of what that would look like. According to the website for the National Hospice and Palliative Care Organization “it is patient and family centered care that optimizes quality of life.” I mentioned it to our primary care doctor once and was told that we aren’t ready for it yet. It makes me wonder if anyone really understands what it is all about?

I had the opportunity to speak with a former hospice nurse the other day which was somewhat enlightening. She spoke about her past career and how wonderful it was for her to be able to help people face the end of their lives in comfort and peace. She mentioned the importance of getting them off all the toxic medications they had been taking to give their body a chance to rest. This was interesting to me as I realized that perhaps I had the wrong idea about hospice. I didn’t realize that one of the requirements of receiving this service is to accept hospice rather than curative care. I am not sure what that means.

Basically, I think that when the time comes for us (or me, as the case may be) to make these difficult decisions about care, it will mean asking hard questions. I will need to understand what their philosophy of care is and how they plan to implement it. If it’s palliative care, how do they define optimizing quality of life and how will it change what we are doing? If it’s hospice care, what does removing curative care mean to them? How much power do I give over to the nursing staff in each situation? Will they be making life altering decisions for my husband? Am I really ready to let go?

For more information check out- Palliative Care and Hospice: 5 Tips for Advocating for Yourself and Your Loved One | Parkinson’s Foundation.                                                                                                                                   

It’s the time of year when I am reminded to be thankful for the good in our lives, but I don’t always remember to thank myself for the good things I do every day in my role as CarePartner. I used to work in a job where I helped other people find and acknowledge their strengths, now it’s my turn. I need to look inside to see what it is that keeps me going, how I manage to make it through regardless of the challenges that pop up, and I need to be grateful.

If I were to make a list of my strengths, I think that organization and resilience would be at the top. I hope that loving and compassionate would also make the top 5 perhaps followed by determined. I know that I am hard-working and try to be kind and fair. I am usually optimistic and would love to add patience to the list, but I am afraid I would be lying. Patience is my biggest personal challenge and the strength I need to grow the most. I would close out my list with curious as I love learning new things about the world I live in and the life I am leading.

It’s easy to see how these strengths impact me in my role of CarePartner. I have to be organized and hard-working to make sure things get done, an optimistic and loving mindset helps me stay calm, resilience lets me jump back in when things go awry, curiosity brings me new solutions for problems I face. My compassion, kindness and fairness are the gauges I use to temper my reactions to the challenges Parkinson’s brings to our lives. When I am feeling overcome, I will take a breath and be grateful that I have the strength, I can make it through. I will thank myself because I am strong enough for whatever this life brings.