My husband recently commented that he felt like an anchor holding me back from doing things I wanted. My immediate reaction was to convince him that it wasn’t true and yet internally I was blaming myself for making him feel that way. What had I said or done to make him feel like he was holding me back? What could I do differently? Then I took a breath and realized that I was trying to fix something that is totally out of my control. I should be aware of what he is going through, and we can have conversations, but his feelings are not something I can change nor do they necessarily indicate I am doing anything wrong.          

I get that he feels a loss over the things we used to do together, I do too. But we are doing other things together. We read the same books and talk about the characters, we work out and enjoy an afternoon aperitif, things we never did pre-PD. There are going to be times when I want to go and do and he doesn’t have the energy, something we are both going to have to learn to accept. Compromise will be key as I give up some of my outside stuff and work to help him understand that he can be okay staying behind sometimes.

As his disease progresses, I will need to be mindful of changes in his personality. Symptoms of Parkinson’s can be anxiety, excessive neediness, even jealousy, things we have never had to deal with before. I hope we don’t have to face these but know it is always possible with his disease. For now, I simply need to assure him that he is not an anchor but instead my tether keeping me grounded as we continue this challenging journey together.

We vacationed in Hawaii for the first time in years and especially since my husband had a shoulder replaced and DBS surgery. I knew his stamina and balance had changed so I asked for wheelchair assistance at the airport. I called ahead and spoke with resort staff about other challenges we might face and was assured we’d have a comfortable spot on the first floor and close to the restaurant. I wanted an ocean front room so they couldn’t give us ADA accommodations, but I felt sure we’d be okay. 

The flight went as planned; wheelchair assist was great. We shuttled to the resort where we ran into a minor problem, our room wasn’t ready, but we were hungry and my husband needed a nap. We got a light lunch at their deli and crashed on loungers by the pool to wait. A couple of hours later we got our keys, and I realized that I should have compromised on the view rather than ADA accommodations. We had an amazing oceanfront location, but the toilet seat was low and there were no grab bars anywhere including in the shower. My husband took it all in stride, but it meant more work for me to keep him safe. I was able to take solo walks on the beach and keep the room in sight so, from that perspective the oceanfront setting was great.

His PD created issues on the trip from day one. With time changes he had to adjust his med schedule simply taking his pills every three hours until it was finally bedtime. Meals were whatever and whenever we could find them. By day two we were dealing with the toilet and shower issues. I had to help with both and there was very limited space. On day three his constipation kicked in. We chose the resort we were at because everything was within walking distance however, we quickly learned that he no longer has the stamina to make it very far. I found we were able to use the resort shuttle to get around. Again, a bit of extra unexpected work for me finding schedules and pickup points. 

Even with our wheelchair assist and Pre TSA passes, airport security was a hassle. Our return flight arrived at 10:45 pm which meant it was almost midnight by the time we got home. We were both exhausted and our bodies were three hours out of sync with our home time.  Thankfully the only thing I planned for the next day was restocking the cupboards. We made a quick trip to the grocery store between naps as we recharged our batteries from our vacation.

All in all, it was a good trip, and I am glad we went. I need to remember that changes in routine and environment will always mean additional work for me. I got to leave some duties like housework and cooking behind but picked up others, often unexpected. Also, our need for ADA accommodations supersedes our desire for a good view. We can take vacations, but his Parkinson’s symptoms never will. I need to accept that reality and be ready for whatever happens. I can always come home and rest, right?

We went out recently and since there were no handicapped spots available, I parked under a light being sure to leave plenty of space on the passenger side for my husband to get out. I didn’t realize that put the driver’s side next to a ditch. I was so busy watching my husband struggling to get out of the car that I didn’t pay attention for myself. My left foot landed on solid ground; my right foot followed finding nothing but air. I fell backwards about three feet into the ditch. I guess I should be thankful that it was dry hard dirt and not mud. I landed on my hip and left butt-cheek, thank goodness for the natural padding there. My head hit the concrete barrier on the other side.

As I was lying there trying to assess the damage, my husband rushed over to help and lost his balance. He fell into the ditch on top of me scraping both shins on his way down. Thankfully a young man saw what happened and came over to help us get out. We were pretty shaken up, but no major injuries.

Looking at this afterwards, a couple of things come to mind. If I had taken a moment to look around, I would have seen the drop and could have avoided it. I tend to overcompensate on safety for my husband, I need to be more mindful of it myself. The second thing that comes to mind is that I have been taught what to do if my husband falls, we have never talked about what he should do if I fall, namely leave me alone to get up by myself. I know he was trying to help and yet it made the situation worse. Now that the bruises are healing and we can look back and laugh, we agree that the new rule is “Don’t follow me into a ditch.”

We are taking a five-day trip to Hawaii next week and have started to get ready. As I am packing, I realize that there are things that we use on a daily basis that have become essential components to my husband’s care that won’t be coming with us. This means that I need to be prepared to step back and remember what we were doing before we found these tools and take those things along. It’s going to take some thought.

One of the biggest things that won’t be accompanying us is our bidet toilet seat. We have both come to depend on that and, unfortunately, the hotel we are staying in won’t have one. Personal hygiene will be challenging and so I am packing some additional aids such as wet wipes. Another tool we won’t have with us is furniture that accommodates his challenges. Our couch sits higher, our bed has an adjustable base, our shower has a low threshold. I will need to be more alert and ready to help when the need arises.

The change in location itself is going to be a challenge. There will be a time difference to negotiate with medication schedules, there will be a relatively long flight and time spent in the airport. Meals will be off schedule and life will be a bit chaotic. I have no plans for anything on either the day we arrive at our destination nor the day after we return knowing that it will take my husband at least that long to recover from the flights.

There is nothing I can take with me to ease this other than a sense of calm myself. I need to be positive and know that the trip will be what it will be. We can do this, I can do this, and we will both be thankful we did once we are sitting on the beach in the warm Hawaiian sun.

My husband needed a new pair of shoes. We knew the importance of good shoes that provide a stable base and support his balance. His old shoes had soles that allowed his foot to rock through each step, making him feel even more unbalanced. He felt he needed something flat on the bottom so when he is trying to get up from a chair, he has a solid foundation. He can still tie his shoes and it is good exercise for his fingers, so he didn’t need to look at slip-ons or Velcro closures.

I turned to Google for help and found that there are many different approaches to appropriate shoes for Parkinson’s Disease. Most of them look at the challenges associated with putting them on but there are also a few that look at balance and stability. I found one study done in 2013 that addresses the soles and suggests that textured soles might help with postural stability. Another website touted insoles that stimulate the bottom of the foot when walking to encourage balance and a better gait. The internet agreed with my husband that the sole needs to be flat on the bottom; contoured heels can decrease stability, especially when getting out of a chair. Finally, the toebox, as it’s called, must be big enough to accommodate my husband’s toes when they sometimes choose to cramp. It’s a lot to look for in a shoe.

There aren’t many specialty shoe stores in our community and, even though I saw some nice examples, I wasn’t ready to order shoes on-line. I tried that once before and learned that he really needs to try the shoe on to make sure the fit is good. We went to a local shop and found some Dr. Scholl’s that have the flat soul, a cushy and supportive insole and are wide enough for his toes to move. He tried them on and then tried doing a sit to stand in the store before we left, it all seems to work. The new shoes are very lightweight which is another bonus. He is a bit clunky in them as he adjusts to the change, but I think they are going to be okay and give him a greater sense of safety and stability and me the knowledge that he is less likely to fall.

For a look at the science behind this check out Effect of Foot Orthoses and Shoes in Parkinson’s Disease Patients: A PRISMA Systematic Review – PMC (nih.gov) on the National Institute of Health website.

I am making puff pastry today. I have never made it from scratch before and was convinced that I couldn’t. Why else would they sell it in the store unless it is too difficult for home cooks? I turned to my trusty friends at google and found a recipe. After getting flour all over my counters and floors and a good solid workout for my rolling pin and arms, the pastry is now in my fridge just waiting to be baked. It was not only possible; it actually was quite easy.

What on earth does this all have to do with my role as a CarePartner for my husband? I am often running into tasks that I never thought I would be asked to do. Whether it is something like nail care for him or cleaning gutters on the house, these are things that I knew were beyond my capabilities. I would put them off as long as I could until that wasn’t an option anymore. Surprisingly, when I finally get started, I find that most tasks are less difficult than I expected. When I finally decide to give it a try, I am able to get many things done that seemed impossible.

My capabilities are being challenged on a daily basis and I am learning that I am up to the challenges. When a new task comes along, I can choose to brood over it and worry about it which just makes it bigger, or I can go ahead and give it a try. More often than not I find that the task gets done and I can move on to the next one. Once in a while I will run into things that are beyond me. Then I reach out to someone for help knowing that I have given it my best. That’s something I would never have known if I hadn’t first gotten started.

My husband’s speech has been impacted by his disease so when we’re out in public he shuts down, looking to me to interact with salespeople, waitstaff, anyone we encounter. When he is forced to speak, he looks to me to translate his words. I become his buffer to the outside world. I want him to be comfortable, so I step in and take over whatever conversation or transaction we are in. But is it really in our best interest? We both know he can still communicate, he does it all the time at home. Wouldn’t it be better if, instead of my stepping in, he actually tried more and gave people the opportunity to respond to him? He’s neither deaf nor mute, he has Parkinson’s Disease. Perhaps we need to give other people more chances to see what that actually looks like.

This is especially important when it is with friends and family. Even his own children are now turning to me more than him. They may still text him on occasion but when we are together, I get to do all the talking while their dad sits and watches. I have spoken with him about this and tried to put him in situations where he had to participate, but it doesn’t always work. I worry that they are losing their personal connection.

We are meeting with friends, people from outside our PD network, for dinner tonight. Some of these people have known us for years and are familiar with my husband’s diagnosis, some will be new. It will once again fall to me to draw him into conversations or to work on getting him involved in the activities. There have been times when I spend so much time trying to make sure he is engaged; I miss out on things myself. This evening, however, it might be time to try stepping back a bit. I think I’ll leave the buffer at home and see what happens.

It happened just the other day, I was suffering from abdominal pains all night, got very little sleep and was definitely under the weather. I don’t like to say that I am sick, as a CarePartner I don’t have time for that, but this time I couldn’t deny it. I was in no shape to care for my husband and barely had the strength to care for myself. I spent half the day in bed and the rest doing as little as possible. It was not a good day for either of us. Thankfully, I have a back-up plan and a solid support network.

My plan starts and ends with the basics. I always stock a few microwavable meals in our freezer as well as keeping a supply of fresh fruits and vegetables around. My husband may not cook anymore but he can still manage the microwave which means he was able to prepare food without my assistance. They may not have been the healthiest of meals but it kept us both going. We discussed the rest of his day and decided he could participate in his Zoom exercise class on his own. I would be close by in case things went haywire, but he was feeling good about being able to do it and would be mindful not to take extra risks.

I had outside obligations, it was the one day a month when we get together with friends from our Parkinson’s community for breakfast. I coordinate these outings so kind of need to be there. This particular morning, the only place I needed to be was in my bed. Again, thankfully, I have a solid PD network. I was able to make one call and a friend stepped in to cover the breakfast for me. It is not part of a set plan, but it worked.

So, I took a sick day and the world didn’t end. By the next day, I was starting to feel some better and was able to do most things. This was a great reminder that it is better to listen to my body than fight with it sometimes. When my body decided I was sick, my husband stepped up, my friend stepped in and I was able to step back for a while. I think my back-up plan just got a new name. From now on it’s my step back plan and it seems to work pretty well.

When my husband needs something, I am right on top of it whether it means a trip to the pharmacy or a call to a member of his medical team. I know my duty to him and take care of it in a timely manner. I don’t stop searching until a resolution is found, whatever the issue may be. If only I could be as proactive when it comes to caring for myself. Instead, my tendency is to ignore or stuff things away with the hope that they will eventually solve themselves. What happens all too often is that rather than fix themselves the issues grow bigger and more complicated to resolve.

There are times when simply talking about a need with others, with no clear intention on my part, can help me find clarity and solutions. I don’t ask for help; I simply mention that I am having a problem and the discussion often leads me in a new direction. Verbalizing a problem doesn’t make it go away, but it does help me better understand where it comes from and often provides insight on different ways to approach it. Defining the issue and potential resolutions out loud makes it all real and suddenly it becomes something I can tackle.

I am looking for a counselor for myself. I put it out there to my support group and they came back with several thoughts and even a couple of names. Everyone was understanding about the challenges we face, and several shared their own stories of therapy. One friend mentioned a book she is reading that is helping her on her journey. I am looking into it as a stopgap until I can find a human to speak with. It is becoming a struggle to find the help I need, but I won’t give up. I am prioritizing myself this time and won’t stop until I get resolution.

The book I refer to is entitled “Women Rowing North, Navigating Life’s Currents and Flourishing as We Age” and was written by Mary Pipher, a Clinical Psychologist. I am reading it because I want to flourish, don’t you?