As my husband’s physical abilities are taken away from him, he seems to be living a more cerebral existence, caught up in his head. And even there, his brain is malfunctioning. Everything in his body has slowed down including the neural processors in the brain that function to keep it all going. Could it be that the mental effort needed to create physical activity is becoming too much? Is that why movement has become so difficult for him at times?

We were told early on that Parkinson’s interferes with neural connections. Activities that used to be automatic would break down and not work anymore. He would have to figure out how to function by focusing and telling his body what to do. In a non-PD brain, neuroplasticity regrows networks allowing for new connections to replace broken ones. My husband’s brain doesn’t have that option. New connections and pathways can still be built, but they are not necessarily correct. Again PD and the medications he takes interfere to mess things up. It’s a very complicated situation and one researchers are working on.

One activity that does seem to have a positive impact on neuroplasticity or regrowth in the PD brain is physical exercise. The medical field hasn’t been able to figure out why exactly but it does make a difference. When my husband was told exercise is the only treatment proven to slow progression of symptoms, he listened and has been working out regularly ever since. Perhaps, that is why we are still on this journey after almost 20 years in spite of all that he has lost.

We attended a presentation by a dietician recently telling us all about what someone needs to eat to slow down the progression of Parkinson’s Disease. Her information came from years of study working with others who have this diagnosis. A lot of what she said were things I had heard before but it was good to review them and have them all put together in one discussion. And she had great handouts of what to eat and what not to eat which made her words easier to understand. The only one question I wish I had asked her is what about me?

Because, like many CarePartners, I cook for both of us and am not sure I am ready to make all these changes in my diet. I get the concept of cooking for my husband to help him stay healthier but will these changes be good for me too? Do I have to give up some of my favorite foods simply because a study said they might be detrimental to someone with PD? I certainly can’t eat them in front of him, that would be too cruel, so how do I make this all work for both of us?

What I am saying is that while I am sharing my husband’s journey with Parkinson’s Disease, I also have a life to live. All of my decisions can’t simply be based on what is best for him without considering the impacts on me. It may sound selfish but maybe that’s okay. She did say that her recommendations can be adapted to accommodate personal preferences and needs. Perhaps those personal preferences sometimes just need to be mine? 

What more do I need to say? There is so much that always needs to be done and only so much time, it often seems I can’t possibly complete my to-do list and care for my husband. The house, the yard, the husband, which comes first? I know it’s obvious that he has to be my top priority yet there are times when I just have to tell him to sit down and not need anything for a while because I have a task I must address elsewhere. It usually works.

I have started taking a moment every night after I go to bed to think about what I accomplished that day. It helps me to understand that even though it may not seem like I’m getting anything done, a lot actually is happening. I include the basics, the meals I cook, the support I give my husband, the things I do around the house. Then I try to think about what I did for myself. It could be the walk I took around the block or the 10 minutes I got to sit outside and enjoy the sunshine. Listing what I was able to do each day helps me let go of what I wasn’t able to get to and sometimes helps me sleep better.

I have accepted that I will never finish all my tasks on any given day, that is an impossible goal. Instead I am working on acknowledging what I did accomplish and understanding that it will have to be enough. I am always doing the best I can in a difficult situation and the rest can wait. It’s job security after all.

We just returned from a short trip to the beach. Being there was very restful, getting there was not. Traffic wasn’t too bad, thanks to mindful planning, but it was rainy and windy. By the time we arrived, we both were stiff and tired from riding in the car. Thank goodness it is only about a 2 ½ hour drive for us, we might not have made it otherwise.

Once upon a time it was nothing for us to go on long road trips, sometimes over a few days. That was when we could take turns driving. Now that I am the only driver, I need to stop for breaks after a couple of hours. It’s good for my husband to get out of the car and stretch his legs too. We actually try to keep all our trips to no more than 2 to 3 hours at a time with a full day to recuperate before the return home. And then once we are back at home, we always allow at least a day with no appointments so we can get back to our normal routines.

In addition to the driving, I have to remember that my role of CarePartner goes with us wherever we go. I can’t let the trip itself be so draining that I don’t have any energy left to provide needed care. We can take our little get aways, unfortunately Parkinson’s is always going to be there with us too.

We’re going to the beach this weekend. We’ll only be gone a couple of days but it still takes a lot of pre-planning and we’ll pack as if we were staying forever because there are so many things we need to take along to make everything work. It’s difficult getting ready to go and can be challenging setting things up in the new location. We’ll both come back needing a day to recuperate but I know we’ll have fun while we’re there.

It’s a lot of work for me as I have to find a resort that has a restaurant that serves three meals every day. If they can do room service, it’s a bonus. We need a room with a view, a deck is even better, because my husband likes to stay and read while I go out for walks. I can’t reserve on-line because I need to speak with them about their accommodations and make sure they can meet our needs. It’s good to know whether there are grab bars and a shower stool, how far the room is from the restaurant and the parking situation just to name a few of the things we discuss.

This time we are returning to a resort we have visited before. We’re not staying in the same room so I had to go through my checklist with the receptionist when we booked. She assured me that we’re in a suite with more room to move around, I hope she is right. I also hope the grab bars in the bathroom aren’t positioned between the toilet and the shower like in the room we had before. That was a bit challenging. At any rate, someone else will be cooking for us, cleaning for us, and the ocean will be right outside our window. It’s going to be well worth any effort I have to put forth to get us there.

We have certain things we do that make our relationship special. Our morning cuddle, our candlelight dinners, our afternoon aperitifs. Many of these have become traditions over the years and most have been adapted as our situation changes. But we still do them in some capacity and it keeps us grounded to who we were prior to my husband’s diagnosis.

Keeping the spark alive in a relationship is difficult in the face of progressing Parkinson’s. I see less of the man I married every day and my role of caregiver increases to overtake my role of loving partner. It’s not fair. I know he’s still in there, I see it in his eyes and in his smiles. But, I would be lying if I didn’t say that some of the challenges of helping with personal tasks can get in the way of having amorous thoughts.

Still we are very much in love and having these traditions give me a chance to set all the rest aside. Seeing him over a candlelight dinner or cuddling with him every morning brings back such good memories. In those moments, Parkinson’s doesn’t exist and that’s what keeps the passion in our relationship alive.

I have a caregiver coming in to be with my husband twice a week for 4 hours at a time. At first I wondered how I would fill those hours but now I am trying to figure out how to get more. There are so many things I would like to do and instead find myself tied up doing those things I have to do. I spend that precious time shopping for groceries, maintaining the house or attending my own medical/dental appointments. Where is all the time I was supposed to have for rest and relaxation?

The problem seems to be that I leave everything that needs to be done for that window of time when we have a caregiver. My to-do list becomes unrealistic and I have finally realized that this is not the best plan. It’s time to rethink the concept that my husband needs constant supervision in case of a fall. He is able to be on his own and be safe. I can work in the garage or yard as long as I check in from time to time. I can even run to the store as long as I check in with him before I leave. I shouldn’t try to do all the chores only when we have help because it is okay for me to let him take care of himself sometimes.

If I can get beyond my overprotectiveness, life will be less stressful for both of us and more productive for me. It’s time to explore the limits I have put in place for myself and see if they can’t loosen up. Then perhaps time I set aside to do things for me can become more enjoyable as well.

My husband is an amazing man and was the techie in the family until Parkinson’s got in the way. Now he still wants to help but we think in different ways and I struggle to accept his assistance, especially when dealing with a new and different challenge. Our new television has been a great reminder of that.

We had the new tv delivered yesterday and I was able to set it up without too much difficulty. The challenge came when it was time to actually use it because the “smart tv” is smarter than I am and the simpler controller is too small for my husband’s hands. Of course nothing comes with an owner’s manual anymore. My husband sat down next to me and was making suggestions that were more distracting than helpful. My frustration level rose and angry words, that should not have been said, were directed towards him even though I know he is not at fault for my difficulties. He was just trying to help and was the only target available.

What I think it really comes down to is who is going to own this challenge. My husband is used to figuring these things out, unfortunately he doesn’t have the dexterity to handle the new controller. I can figure it out given time, but do better without an audience and he wants to be there to help. We will figure this out, however, it is going to take patience on both our parts as we do our best to share the task. Hopefully once we are done, we will both understand how this new controller works and how to share control when these issues come up.

You may find out you are more capable than you thought. Even though new challenges that come up on my journey can be scary, I have learned that usually I can manage them. And, even if I try and fail, the world won’t come to an end. Generally these are things that have to do with my ever growing role of homeowner and not in caring for my husband. Let me share a couple of examples.

Our television is dying and we are going to need to replace it. My husband’s first comment was, “You do realize how complicated it will be to change out the tv? You should call our son and let him go with you to the store. Then he can come and help you set it up.” I don’t think he realizes I bought the current set on my own and have been maintaining it through multiple changes over the past few years. He is just trying to be helpful but I’m not sure I need it.

The second example came last week. We recently had some work done in our garage and it involved taking down our 4’ X 4’ pegboard tool rack. I wanted the rack put back up on a different wall. I thought about asking our contractor to do it but it seemed like such an easy task. My husband offered to help hold it while I put it up, which could have worked, but I wasn’t completely comfortable with that idea. I found a better solution by using a table to hold the board until I could mount it to the wall and had it done in about half an hour.

In both of these situations, I could have depended on someone else, but by doing them myself I am able to control when it happens and can stop should I find it actually is beyond my capabilities. I hung the pegboard, let’s see how buying a new tv goes. I think I’ve got it.