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.

It’s the beginning of spring and, as homeowners, we have a lot of additional seasonally related tasks. Finding the time to do these while still caring for my husband can be challenging. What seems to work best for us is to keep those tasks in mind but not try to do them all at once. I also try to be prepared for any of the tasks before I start so I have all the tools ready and can get going quickly.

As an example, we have a large patio that needs to be cleaned every spring and I have a power washer which I love to use. I know from experience that this task can take most of a day but when do I ever have that much uninterrupted time? Yet we managed to get it done this past weekend. How did we do it? I simply looked for a day of good weather and a day when my husband was also feeling good. Amazingly, it happened on Saturday. I made sure his needs were met and then started the job. I carried my cell phone in my hip pocket so he could text if he needed me and physically checked in with him regularly to see if all was okay. In the afternoon, I set up a chair for him close to where I was working so he could watch and feel a part of the activity. Knowing that things can change quickly, I also had a back-up plan and was prepared to stop work at any time. I did the minimum necessary, got the power washing done and left setting the patio up for another day.

I could have broken the cleaning project into two days but know I never can depend on tomorrow being another good day. Instead I pushed forward and got it done. As it turned out, Sunday was also a nice day so I got all our patio furniture out, with my husband’s supervision, and we were able to enjoy a snack outside to celebrate a task well done. As my husband put it, a long range plan completed through short range action.

My husband was unable to exercise for about a month due to his battery replacement surgery. The surgery itself was minor, missing his exercise classes has had a major impact on him. During that four weeks with no workouts, his already sore right knee got sorer, his left side stiffer, and now he struggles to do even one sit to stand. They were tough before, they are impossible now. We have a friend with PD who is also recovering from cancer treatment and she says the same thing. Not being able to exercise has taken a toll on her leg strength and her ability to care for herself. Her husband is having to step in much more than ever before and things are not getting back to their former normal.

This was a complication we didn’t even consider prior to the surgery. I am pretty sure that my husband’s doctors didn’t either. If so, they might have encouraged lower leg exercises or alternatives he could have done during recovery to help retain his abilities rather than telling him not to do anything. I understand protecting the incision area following the procedure but he lost so much time when he could have, should have, been working on his mobility.

I am going to be sure to mention this to his neurosurgeon and his PCP. I think it is important for everyone to understand the consequences of post-op instructions and figure out ways to keep people moving while still allowing them to recover. My husband has lost mobility that he may never get back simply by following what he was told, there has to be a better way.

This word has been sitting on my mind lately. What does it mean in a Parkinson’s driven world? What exactly is it that I am looking for clarity about? Do I want to know what’s coming next or simply understand what is happening right now? Is it clarity about how to deal with what my husband is facing or what I am facing as his disease progresses? His meds can sometimes give him something he refers to as a foggy brain, this diagnosis gives me a foggy everything.

If only I had a better handle on what comes next, I could feel more in control and relax into my role of CarePartner. The uncertainty of my husband’s diagnosis keeps me guessing from day to day, even from hour to hour. I make plans for shared activities knowing they depend on how his day is going and may be canceled at any time. Our lives have become very flexible out of necessity. Plans for myself are also somewhat limited because I can never be sure he is going to feel well enough to be left alone so I can I go out even for just a few minutes.

Clarity even comes to the basic question of why us. Why do we have to walk this difficult path? It was not on either of our radars, and certainly not something we would have chosen. Was there something somewhere that would have led to a different outcome? If we could know the why, perhaps it would help us accept the reality. And perhaps that knowledge could keep others from facing these challenges in the future. For now, I simply keep fighting through the fog and hope for a good day. It’s all we can do.

For me that escape comes from writing. I thought today I might share a poem I wrote in honor of Parkinson’s Awareness Month. I hope you like it.

They found a Cure Today

They found a cure today
Parkinson’s Disease is history
My husband’s body won’t tremor anymore
He’ll be free to walk without aids
He won’t need medication six times a day
I can be his full-time wife again
instead of his caregiver
We can forget chronic illness and look for relief
We’ll turn back the clock
As we take trips to exotic places
We have dreamed about for years
Instead of Doctor’s Offices
We will go dancing at wineries
Instead of visiting Physical Therapists
Entertain family and friends
Instead of sitting alone at home
We can rebuild our lives
If only they actually had
The wish sustains me

I am learning more about my husband’s journey with aging and Parkinson’s Disease every day. I didn’t understand some basic challenges my husband was facing until they were called out to us. I didn’t realize that, back when he was showering himself, there were parts of his body he couldn’t reach to properly clean. We were being interviewed by a nurse evaluating his need for assistance when she asked who washed his back and feet. It was an “aha” moment for both of us.

In a more recent encounter with a speech and language pathologist, we were told he had a lump on the back of his tongue. I bought a tongue scraper and started helping him with his oral health twice a week and it seems to have gone away. The foot nurse who trims his toenails complimented my husband on his excellent foot care. He mentioned that many of his patients have fungus growing between their toes and other foot conditions from poor hygiene. I guess we’re doing something right.  

Dry skin is a constant with Parkinson’s and I am able to keep an eye on it when I help him dress. His caregiver trims the hair in his nose and ears and alerts me to any possible problems there. Parkinson’s impacts so many of my husband’s usual capabilities that only by working closely with his care providers are we able to make sure everything gets done. Especially those things he may not think of himself.