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.                                                                                                                                                                                                

We just got home from a few days at the beach. When we were first together we travelled often, this is the first time away from home in over a year. I thought this might be a good time to share some tips on what made our trip good and what could have been better.

If I asked for my husband’s input, his first response would be “keep it close and short”. He wasn’t excited about going, but I finally convinced him that it would be okay. I chose a resort at the coast, two hours away by car, that had studio rooms with ocean views. Valet parking helped us with arrival and departure and the on-site restaurant with all day room service meant less hassle for mealtimes. Having a kitchen was good for us since we both like to snack. And, while we were there I got him to admit that it wasn’t so bad after all. But he was ready to come home after just two nights, not the three I had reserved.

Accommodations look different to someone who doesn’t live with a disability. I called ahead of time and asked a lot of questions. I was specific about my husband’s challenges and the basics we needed. A room advertised as being ADA compliant usually means they have installed grab bars and a walk in shower. It doesn’t necessarily mean that the grab bars are in the right places. In this case they were situated between the shower and the toilet. They fit within the space allowed but it was not the most useful arrangement.

I tried to take any tools we might need to have a safe and successful trip. My husband depends on a walker at home so even though he might have preferred his cane, the walker came with us. I brought everything we needed for personal grooming. I know that he really missed having his transfer pole by the bed, but I am not sure the hotel would have let me install one anyway. The first day is always going to be spent resting and figuring out how to make things work. I keep in mind that outings in a strange environment may be beyond our capabilities. I didn’t have an agenda for this trip other than getting away and that really seemed to work best.

We had a lovely view of the ocean in a room that was comfortable and, for the most part, accommodating. I was able to take short walks on the beach while my husband stayed in the room with a good book. There was a patio on the ground floor that lead out to the beach. We spent some time there enjoying the sun and watching for whales. Life was a bit more complicated than being at home but we managed. Will we go again? Let me get back to you on that in about a year.

I HATE PARKINSON’S DISEASE AND ALL OF THE STUFF IT BRINGS WITH IT! I said stuff but know I was thinking of another “S” word I worried might insult some folks. You are welcome to use whatever word works best for you in your situation. Over the years I have posted lots of positive comments on the wall behind my computer. Things to make me feel better and keep me motivated in the moment. This one is a new one and it is going up as soon as I finish writing this blog.

It’s not an original thought, Connie Carpenter Phinney, CarePartner for her husband who has had PD for more than 20 years, opens her workshops by having everyone in the room yell “I hate Parkinson’s!”. When my husband and I belonged to a local gym that specialized in Rock Steady Boxing for PD, one session had us throw balls at a wall and call out the reasons we hate this disease. As a CarePartner I hear regularly, it’s okay to be mad at the disease just don’t take it out on your loved one. I just want to say that there’s a lot of hate that has built up over the years and it’s DOGGONE hard not to let it come out sometimes! Again you can replace the “D” word with one of your own, whatever works for you.

Getting upset, however, doesn’t do much good. In fact, it is harmful for me to let my emotions flair so I am trying to come up with alternative actions. Waiting until I explode isn’t the best plan, the moment things start to escalate is the best time to act. If I recognize what’s coming I can slow my breathing, refocus my brain and remind myself that whatever he is doing, it isn’t intentional. Taking a physical step away can separate me from the anger and allow me to find compassion instead. Then later, when I am in a better mental space, I write in my journal. My words rail against the disease that is ravaging my husband and destroying our lives. I say all those things I had to bite back in the moment because I know it’s a safe place for me to express my feelings. Sometimes I go back and read what I have written, more often just getting it down is enough. Then I am ready to put the smile back on and move back into the role of loving CarePartner. That’s who I want to be for my husband and what he deserves after all.