For the first few years after his diagnosis with Parkinson’s Disease, my husband and I were going it alone. We were both working and didn’t have time for support groups. Besides, my father had PD for several years before he died so I thought knew what to expect. I was so wrong. There was one person at work whose father had PD and we met occasionally for coffee, but our situations were so different. I was depending on webinars and bi-annual visits with our neurologist for answers to my many questions. A lot of what was happening felt so strange and I didn’t feel comfortable talking to my husband about it. I felt alone and lost. 

Shortly before I retired and became a full-time CarePartner, I started looking for a Parkinson’s Disease support group. I didn’t know what we would find but knew I needed something, someone who would understand our struggles. That first meeting was wonderful. We walked into a room full of people who weren’t staring at us or judging us, they were simply welcoming us with love. I remember crying a bit as we shared our story. It was scary joining with others who were farther along in their journey, yet it also gave us the opportunity to see the diversity. I hadn’t really understood how Parkinson’s affects everyone in such unique and different ways until we met this amazing group of people.

We have been a part of this group for several years now and I serve as a co-facilitator. I will gladly admit that the support has been more for me than my husband. It’s a place where we, I can talk about the challenges we face and often find solutions. We are able to share our journey with others who truly get it more than our doctors or our families. The one piece of advice I would give to anyone whose loved one is newly diagnosed, is don’t wait. Caring for someone with a chronic illness like PD can be impossibly difficult, find a group to help you on your journey and hold them close.

The holiday season looks different now that I live with someone who has Parkinson’s Disease, that doesn’t mean I can’t still celebrate with family and friends. I have found that the following tips help me enjoy our holidays without exhausting either of us.

1. Be honest with myself and choose activities wisely. Consider what my personal capacity is and only accept those invitations or make plans that will fit within our current situation. I don’t have to do things simply because I have always done them in the past.
2. Do my groundwork ahead of time. Talk with my husband about what’s coming up and decide together what we want to do. Talk with friends and family so they know where we both are in our journey with PD so they can be supportive and understanding of our needs. Create realistic expectations for everyone. If we can only stay for an hour, or I need the party I am hosting to only last for two, I let everyone know in advance.
3. On the day of the event, I can be a good buffer. I can help my husband connect with others but keep an awareness of how he is feeling. It may be that he simply wants to find a quiet corner so he can interact on a smaller basis and that’s okay.
4. Accept that things may be different as my husband’s symptoms progress. It’s okay if we don’t decorate the house. It’s okay if we don’t go to everything we are invited to, it’s okay to change traditions to fit what we need now.
5. Remember that this is my life too and that it’s okay for me to find time for joy in the holidays. Maybe this year I order dinner from the grocery store rather than spend the day cooking. Maybe I ask for help cleaning the house before guests come over, better yet, maybe I let someone else play the host this year. Maybe I find a way to step out of my role as CarePartner to relax and engage in the fun. It’s all okay as long as I find ways to share in the love and the holiday spirit with our family and friends.

We have a caregiver coming one afternoon a week for 4 hours. It’s working well, she helps my husband and does a few chores for me, things he used to do. They go out to the gym together, which gives me some alone time in my house. I can go shopping without feeling nervous about leaving my husband at home. It gives me a much-needed break and forces my husband to interact with another human being. But there are still challenges we need to work out.

For example, I don’t always want or need to go out while she is here. If I don’t leave, they interact with me, whereas I just want to be left alone. I can lock myself away in a back room or go outside so I am not available, but why should I have to? I always make a point to thank the young woman for taking care of my husband and emphasize how much I appreciate having uninterrupted time for my chores, but why do I feel the need to be doing chores? Why can’t I just be here relaxing while she is in charge?

Last week, she mentioned that she was going to change the bedding while I was available to keep an eye out for my husband. I didn’t answer, not sure what to say. I have been thinking about creating boundaries for this time and if it comes up again, I will say (as kindly as possible) that she is here so I don’t have to keep an eye out. I will tell her again how much I appreciate her help, and then walk away. I need for her to be his ‘go to’ person while she is in the house so I can ‘go to’ my quiet place and enjoy the break.

My husband almost walked into a wall the other day. He has almost falls, those times when he goes to sit down where he thinks the chair is and it isn’t quite right. He almost missed the bed last night, sitting too close to the edge. He tends to walk too close or will bump me because he doesn’t recognize that I am standing next to him. His sense of where his body is located has become skewed thanks to his diagnosis of PD.

This is also referred to as losing visuoperceptual ability and means just that, not being able to perceive where things are in the space around you. In my husband’s case, it includes not being able to perceive where his body is in relation to those things. It isn’t an indicator of any form of dementia, it is a unique challenge and it appears tied to the decreasing dopamine in the brain. As the disease progresses, some people find it more difficult to recognize colors and contrast which appears to negatively impact their understanding of spatial relationships.

I try to keep an eye out for those times when my husband is particularly wobbly to minimize his falls. I watch as he sits and even help guide him down at times. When he stands too close, I move away to give us both space. I help him in and out of bed. The main thing I do is try to be patient and understand that this is simply one more thing he cannot control. It’s one more reason I hate the disease and love the man as he continues fighting against it every single day.

For a look at one of the smaller studies conducted visit Visuospatial dysfunction and problem solving in Parkinson’s disease – PubMed (nih.gov).

I wish I could say that the above statement wasn’t true, but unfortunately it is. My greatest anxiety comes from the unknown qualities of this disease, the uncertainties about where it is leading and what new challenges tomorrow will bring. Added to that are my personal concerns about my own health, will I be able to provide the care my husband needs as things progress? Is it any wonder I am living in a constant state of anxiety?

I tried to find advice on-line for caregiver anxiety and was redirected to depression and burnout. I want help before I reach that point, not after. I know that Connie Carpenter Phinney of The Davis Phinney Foundation has a tool called “Rewriting the Rulebook”. It reminds me that I do have some control in this journey, albeit limited, and that I just need to define my “rules” so that I can have a positive life. It’s not a roadmap but it can help me create boundaries as I stumble along and may alleviate some of my daily anxiety. I don’t always know what to expect but I can have a plan on how I will react.

If I recognize when my anxiety begins to grow, I can stop for a moment and consider where it is coming from. If possible, I take a journaling break, if that doesn’t work, I take a couple of deep breaths and try to shake it off. Movement helps me deal with feelings of anxiety, breathing helps me, writing helps me, yoga really helps me. To break anxiety’s hold over my emotions, I use any activity that demands my total attention. I find something to remind me that life is bigger than my husband’s diagnosis of PD, and then I am ready to continue on.

For more on how to address your feelings of anxiety see Anxiety and Caregiving (familycaregiversonline.net). To get your own copy of Connie’s Rulebook, visit here Parkinson’s Care Partner Resources – Davis Phinney Foundation.

My husband has fallen twice in the past couple of months which means that we have had more bad than good days. But today has been a good day. He got up feeling energetic and helped me prepare breakfast. I was able to take an hour and watch a CarePartner webinar and then we participated in a Rock Steady Boxing class together for an hour, something we’ve been missing for quite a while. He even felt good enough to go out and get a haircut and visit a coffee shop with me afterwards.

I wasn’t expecting a good day but am grateful we are having it. Even the weather seems to be cooperating, the sun is shining, and the temperature is well above average for this time of year. We’re probably about done with outside activities; the day has been somewhat busy for us, and I don’t want to push my luck. I am simply thankful for the opportunity we are having to revisit some of what life was like pre-Parkinson’s.

I know that I can’t base my expectations for tomorrow on what has happened today, I just need to be ready and willing to accept whatever comes. I will, however, strive to hold tight to the pleasure that today has brought to both of us. Like I said, it has indeed been a very good day.

My husband suffered with lower back pain and stiffness long before he was diagnosed with PD. He would have episodes that were so bad they would land him in bed for a day or two. He tried everything to relieve the pain, and nothing seemed to be working. He finally decided, after much prompting, to see an acupuncturist. Our first visit was yesterday.

The receptionist couldn’t have been nicer, and the doctor seemed very knowledgeable and sincere. Everything was good until we reached the treatment point and my husband needed to be face down on a table that was 4 feet off the floor, not an easy maneuver for someone with PD. The doctor brought out a stool and was able to help him get up and situated so the treatment could proceed. My husband’s back was probed, needles were placed, he sat with a heat lamp for about 15 minutes and even got a bit of massage on that lower back area. Then it was time to get down.

To get off the table, which was about 3 feet wide, he first needed to lift himself, turn over and sit up. The doctor helped him roll over to the left, not understanding that’s his weaker side, and they were stuck. I was watching from a chair, not wanting to interfere, as the doctor told my husband to use his arms and push himself up. This went on for several minutes before the doctor realized he wasn’t going to be able to get him off the table safely and asked for my help. I moved to my husband’s back and helped lift him into a sitting position from behind then came back around front and helped him get down.

He has 4 more sessions scheduled and I am wondering if we will make it through. When we got into bed last night, my husband told me that his left shoulder was really sore, I think he strained it trying to get off the treatment table. I am going to encourage him to practice laying facedown and then getting back up to a standing position using our bed. Perhaps we can work out a solution for this challenge before his next appointment. If not, we may have to give it up since getting on and off the table may cause more damage than the treatment provides relief.

It’s a different life for us these days as so many of our outside social activities have gone away. I blame the change on my husband’s mobility and communication issues, but the reality is that it is just too much effort for me. Being with a non-PD group is more difficult as I struggle to balance my caregiving duties with my desire to interact in the fun. Our last attempt was dinner with a small group of friends. We were in a beautiful backyard setting which sloped gently down to a riverbank. The unfamiliar and uneven terrain kept me on the lookout for fall risks and the seating left us struggling to be a part of the conversation. We stayed for a couple of hours, but it was exhausting for both of us.

We do have a “safe” group from our PD network that we breakfast with once a month. It’s an interesting dynamic though because we separate into two groups, CarePartners and People with PD, and I am not sure how much socialization goes on that other table. My husband has said once or twice that we have too much fun at our end of the room.

Part of our solution has become family dinners at our house, something I do on a monthly basis. They provide social interaction and give family members a chance to see where we are so they might better understand what is happening. My husband doesn’t engage in conversations like he once did, yet he seems to enjoy the company almost as much as I do. It’s not a huge crowd, usually about ten of us, which can still be overwhelming if we’re all in the same room. We keep it to a couple of hours as I know how tiring it can be for both of us. It may be tiring, but it is essential as we try to maintain some outside connections on our journey with PD.

It just happens. In our case, it came on rather slowly and over a number of years as PD slowed the processes in my husband’s brain. He is still able to think, but acting on those thoughts takes additional effort and is often short-circuited before completion. Autonomic functions are failing which means that he has to put more energy into doing normal bodily functions than he should. As things progress further, it becomes impossible for him to make a choice from multiple options because it takes all of his focus simply to function. This is when he turns to me.

Because of what is happening to my husband, I find that I am faced with making decisions I never expected. The sheer volume of daily decisions can be overwhelming let alone the bigger once in a lifetime things. Should he be driving? Should we sell our home or renovate to make things easier? Should we be considering in-home care to help us both? There are days when simply trying to decide what we should have for dinner is just too much, but somehow I figure it out and we always get fed.

I still want my husband’s input on things that matter. I try to have open conversations ahead of time so when tough decisions arise, I know what he would say. If there are smaller decisions we can do together, I break them down and only give 2 or 3 options at a time. This makes the process easier for both of us. By getting his help with decisions whenever I can, when the time comes that I have to make them without him, he understands and it’s okay.

For more on decision making and PD, check out Mental Wellness: Addressing Thinking Changes in Parkinson’s | Parkinson’s Foundation.

As my husband’s symptoms progress and his care needs increase, my time is slowly being taken over by what I need to do for him instead of what I want to do for me. The uninterrupted hour of computer time that I used to have in the mornings while he was showering and getting himself dressed is gone. I still get to sit at my desk for a while, but it is broken up as he needs help drying after his shower, he needs help with shoes and socks and, based on the day, he may need additional assistance.

That daily hour was when I would write in my journal and work on this blog, but it becomes difficult when I am constantly getting up and down. I catch myself skipping days or rushing through simply to get it done. I notice that I have a different attitude on those days when I don’t take the opportunity to sort out my thoughts. I am finally figuring out that my “want to”, that desire to write, is really a “need to” for me. It may not be possible for me to have that uninterrupted hour in the mornings, but somewhere in my day I must find a space and a time to do this.

I think we all, as CarePartners, have those activities that sustain us and it’s important to practice them on a regular basis. In our house it may mean that I put off that load of laundry or cut back on meal prep time, giving up on something else to see that my need to write is met in a positive and regular manner. Caring for me means that I am caring for my husband to the best of my abilities, and that always has to be my top priority.