When my husband first received his diagnosis, it took me a while to get my head around it. I wanted to be here for him whatever that looked like but was terrified at the same time. I finally found the strength to accept what was happening to our lives and our future without really understanding what acceptance might mean. I knew that I loved him and that we had made commitments to each other. I decided to do my best to have a good life regardless of the complications PD might bring.                                               

What I didn’t realize was that accepting the diagnosis was just the first of many changes and challenges I would have to accept in my role of CarePartner. As his symptoms have progressed, thankfully at a very slow rate, my caregiving/caretaking skills have had to progress too. In other words, as his abilities decrease with time, my capabilities and capacity have to increase to meet his need for assistance. My most difficult challenge is accepting the emotional toll as I see a little less of the man I fell in love with every day.

Our lives have been going well lately, well becoming a relative term when you live with someone who has a chronic illness. If I compare my life today to that a few years ago, I would say things are not so well. The Caring Partner role I play has changed significantly and it has taken a boatload of acceptance. That is why I need to focus my energy on what is happening today and not look back to yesterday or forward to tomorrow as we continue to move along this shared Parkinson’s journey.

My husband is diagnosed with typical Parkinson’s Disease. That diagnosis has not changed as his symptoms progressed. This is significant because the Parkinsonism umbrella is large and includes several atypical versions of this neurological disorder that look like PD but aren’t. Those diagnoses are not always seen early in the illness and are often added at later stages. They are called Parkinson-plus syndromes and include MSA (multiple system atrophy), PSP (Progressive Supranuclear Palsy), DLB (dementia with Lewy bodies) and CBD (corticobasal degeneration). Treatments for each may vary but the role of CarePartner doesn’t change.

It is interesting that these newer sub-categories didn’t exist 30 years ago when we were dealing with my father’s diagnosis. Looking back it is obvious that he had DLB (dementia with Lewy bodies) but it was never defined as such nor explained to us. Still my mother did everything she could to keep him at home until his behaviors became dangerous and he had to be hospitalized to protect both of them. Will on-going research be able to even more clearly define the differences within Parkinsonism and help create better treatment plans for the many different categories? We can only hope.

Getting back to my original thoughts, I was talking with a fellow CarePartner who said the doctors now think her husband actually has MSA (multiple system atrophy) rather than PD. They have taken him off his carbidopa levodopa because it wasn’t helping much. The change in diagnosis doesn’t change her challenges in caring for him. She was concerned because the doctor told her that his life expectancy is less than regular PD, but she still stands ready to help him fight the upcoming battles.

As a CarePartner, I am called upon to acknowledge my husband’s illness, accept the changes and absorb the impacts. If things shift, I must shift with them because I know together we can weather whatever storm, under whatever name, Parkinson’s decides to throw at us. My role in this journey doesn’t change because doctors someday decide my husband has something else. I simply need to be ready to love and care for him the very best way I can regardless. 

This is not something I like to think about let alone write about. My husband is older than I am and has a progressive illness so I will probably outlive him. In the time since my husband was diagnosed we have watched so many of our friends pass away leaving their CarePartners to figure out life after PD. I find it difficult to even imagine what that will look like.

I had coffee yesterday with a friend who recently lost his wife. He was her primary caregiver until briefly before she passed. He felt that he owed it to her and would not listen when even she told him it was time to ask for outside help. His life was 24-7 caregiving for her with no time for self-care. I compare that to a couple of other friends who lost their husbands. They were also primary carers but did accept in-home help. They recognized the importance of self-care and had outside interests. My male friend is six months into his bereavement and still struggling with how to rebuild his life. My female friends are grieving too, but they are also travelling and reconnecting with family and friends.

I don’t want to be lost myself when my husband passes. I want to have room for grief and also room to move forward in life. To that end, I have in-home care and a regime of self-care that includes gardening, exercise, socializing with friends, and simply escaping the confines of our PD lifestyle on occasion. I am able to do this without taking away from providing for my husband’s needs. In fact, I think I am better able to care for him because I am taking care of myself. I believe that having a life beyond my role of CarePartner now should serve to help me transition when he does pass. Hopefully I won’t be facing life post Parkinson’s for quite a while yet, I’m not ready yet to say that final goodbye.  

We went for a drive to a local resort for lunch recently. We were only gone about two and a half hours and planned so it was between medication times. We had to bring along my husband’s walker, but otherwise it was as much of a PD free experience as is possible these days. The weather was perfect, the drive was beautiful and lunch went well. There was even time for a short walk around the grounds. As I mentioned, we were back just in time for his next dose of carbidopa levodopa and a nap. It was such a nice visit we’re considering returning and spending a night.

Some days it truly feels like we’re immersed in Parkinson’s Disease. If my husband’s pill alarm isn’t going off then it’s time for him to exercise or do his speech practice for the day. We are surrounded by reminders of his challenges, the transfer poles in the living room and bedroom, grab bars in the bathrooms and door handles throughout the house. All the modifications we’ve made to our home to make it more livable are great but also keep us grounded in his diagnosis.

It can be difficult for me to see the man I feel in love with amidst all the requirements of his treatment. Leaving all the trappings of PD behind gave us both the chance to be someone different. On that one day, we were able to revisit our earlier selves and connect in a different manner. Even for only an hour or so, it was well worth the effort and I think we are going to have to do it more often while we still can.

I spend a lot of time doing things for my husband that he used to do for himself. It has become the natural state of things. What I forget sometimes is that this disease has ups and downs, good days and bad. He may not always need my help. Am I sometimes guilty of doing too much? Probably, it’s tough to know just how much help is too much. I try to step back and encourage him to try things before taking over. Sometimes I delay a bit before coming to assist. I have found that occasionally it works and I think his capabilities surprise both of us. But it is not always that way.

There are times when I feel I am too bossy as I push him to do more. It even seems like maybe I’m being mean or neglectful. I lose sight of the concept that something he couldn’t do yesterday, may be possible today. Or vice versa. Parkinson’s is unpredictable and his symptoms can vary by the day, even by the hour depending on how meds are working or where his dopamine levels are. I need to encourage him to do as much as possible in every situation but be ready to step in when things just aren’t working out.

“Are you okay?”, “Do you need help with that?”, “How’s it going?” and similar comments come out of my mouth what seems like a hundred times a day. I’m sure he gets tired of hearing them just as I get tired of saying them. But, I can’t know where his limits are unless I ask and those limits often change. So I keep on asking, even though it may seem like nagging at times, because that is the best way I know to encourage and support him. And I hope he understands why.

Way back when my husband was first diagnosed he decided that he wanted to take part in as many  research projects as possible. He didn’t expect any amazing cures to come along for him, but the hope was that he could have an impact on the future of Parkinson’s. Maybe his participation would mean that our kids or grandkids wouldn’t face this same journey. He was in several movement studies, cognitive studies, and still participates in one looking at long term PD. It has added value to what was a rather bleak outlook as he can see the data being gathered on him and so many others is making a difference.

It is important for me to do what I can too. I just, as in 30 minutes ago, finished the PPMI Scratch and Sniff Test. I am not sure what they are looking at, but it was an easy way for me to be involved in Parkinson’s Research as a non-patient. I mentioned above that it research is one way for my husband to feel he is fighting back, the same applies to me. I don’t want to leave this world without knowing that I did everything I could to help put an end to this awful disease that took my father from us and will one day take my husband. I don’t want to see others facing the same challenges when there may be a cure.

Getting involved isn’t difficult. If you are interested in learning more about opportunities for you or your loved one to participate in life changing research studies, click on one of the links below. Perhaps there is a reason my father and my husband were both diagnosed. Perhaps my contributions to research, however small, will one day bring us to a cure. I can only hope.

https://www.parkinson.org/blog/science-news/cell-replacement https://www.parkinson.org/advancing-research/our-research/research-spotlight https://www.michaeljfox.org/your-role-parkinsons-research or for something more local https://www.ohsu.edu/brain-institute/patients-parkinsons-disease-research

We got a message from the agency that provides our in-home care today. They have revamped some of the materials provided in their Client Information Packet and wanted to share the updates. I found it interesting that 2 of the 11 pages were dedicated to my role in my husband’s life. They had included a Caregiver Burnout survey and a page with suggestions on how to deal with it.

The questions in their survey ask for simple True or False answers, not always easy to provide since my feelings are often based on the type of day my husband is having. They range from “I feel emotionally drained” to “I feel trapped and hopeless”. The following page gives pointers, nothing I haven’t seen before, including using relaxation techniques, exercising, making time for you and getting help. At least they do acknowledge that making time for me can be difficult, after all that’s why I contacted them in the first place.

There are many on-line options for evaluating where I am on the Caregiver Burnout continuum. I do like to take a look at them occasionally as a way to check in. My scores never get better, but taking time for reflection helps me appreciate the challenges I face as a Parkinson’s CarePartner and helps me prepare for decisions I may need to make along the way. I can’t be effective in self-care without first being realistic and self-aware about the impacts on my life. The surveys, no matter how generic, can help.

My favorite survey is the Zarit Caregiver Burden Interview and can be downloaded here.

Our recent beach trip showed that life goes on regardless of where we are and encouraged me to reconsider thoughts on travel. I had decided that it was just too much work to try to go somewhere especially since all we would be doing is sitting in the hotel room reading. If that’s what it’s all about, we might as well stay home and have all of our accommodations. What I wasn’t considering was that as long as we’re at home I can’t just sit and read, there’s always something to be done. The beauty of being away is that someone else takes care of those things that have to be done instead of me.

I am rethinking some of the barriers I have created around our lives. I had forgotten the premise that I should always assume we can, rather than can’t, do those things that make life richer. It’s important to be open to opportunities for joy even when they come with what seems like overwhelming challenges because we are more capable than I sometimes give us credit for. My husband has always had a can-do attitude, I need to refresh and recommit to mine.

Yes, my role as CarePartner doesn’t change with our locale, I take it with me. But I get to leave so much else behind that it becomes, dare I say, easier. I am not going to plan any big trips to Europe, that would be beyond us now. However, local day trips and occasional overnights might just work their way back into our plans. Maybe that road trip to Yosemite we’ve been talking about for years? And the more we do it, the easier it will become. PD has taken a lot from us, maybe it’s time we took just a little bit back. 

I’m not sure how long it took me to actually accept my husband’s diagnosis, perhaps I am still trying to get my head around it. After all, things seem to change for us on a daily basis. What I do know is that recognizing and understanding the enormity of some of the impacts on our lives has been difficult. I also know that if I’m not able to accept the challenges he faces, I can’t support him as fully as I want.

It’s a tough road as a Caring Partner. I am asked to be prepared for whatever this diagnosis might bring. I won’t say I don’t have a clue because I do. I’ve seen what it did to my father. I ‘ve watched other friends on their journeys. I know that there is a chance my husband will develop dementia as things progress. I know that his physical needs are going to get bigger and that one day I may not be able to manage. I know that he is not going to get better, this is a chronic diagnosis that will be with us for the rest of his life.

It really is no wonder that I have a hard time accepting this is what our lives are going to be. It is no wonder that sometimes I have to fight back tears as consider the life we should have had. Yet, as difficult as acceptance may be, the alternative is much worse. So, I find a way to accept and move forward in gratitude because I get to share my life with a wonderful man. Whatever that life looks like, we’ll make it work.