My husband has exercise classes, physical therapy, speech therapy, dental and vision appointments, when do I have time to schedule them all? And what about my appointments? I need to see my doctor, I need to get my teeth cleaned and my eyes checked, but when? The car is overdue for an oil change, it’s time to have our furnace serviced, trees and shrubs outside need to be trimmed? The cat needs to go to the vet for her annual check-up? You have got to be kidding!

We have multiple calendars in our house, our primary one hangs on the kitchen wall. I update it regularly and it helps keep me sane. My husband and I both have calendars on our cell phones that I work to keep updated too. It’s an ongoing challenge. Just this past week I finally had to tell him that I can’t do any more right now, and then I feel the guilt of not doing enough. We both have to accept that until something changes, we are fully booked for the next month at least.

I honestly don’t know what the answer is. I prioritize activities he does to fight back against his diagnosis. I know he must do these things to stay healthy, yet there also needs to be time for other necessary chores. My “to do” list gets longer and becomes my “not now” list. As long as these extra tasks are on list somewhere, I guess that’s better than forgetting them altogether. Maybe they’ll get scheduled somewhere sometime, until then they just need to wait.

There are days when the only way for me to find a positive outlook is to start with a negative one. I know this appears to contradict what I have said in other writings. I am usually more of an optimist than a pessimist, but being a PD CarePartner has made me a realist. Loving and caring for someone with Parkinson’s can be difficult and depressing. Accepting the challenges this brings, and the feelings that come with them, is simply a normal day for me. That doesn’t have to mean it’s all bad.

Staying positive on a daily basis often means adjusting my thought process. If I expect things to go haywire, then I am pleasurably surprised when they go right. Maybe it’s best to be prepared for the worst rather that always go around seeking a beautiful, sunshiny, happy day. I’d rather have an unexpectedly pleasant outcome that brings joy than an unanticipated bad one that disappoints.

Don’t get me wrong, I am grateful for every day that I get to spend with my wonderful husband. I understand that things are going to happen that we can’t anticipate or control because of this disease. Some days are going to be easier than others and that’s come to be our normal. So, for me, it has become a coping mechanism to expect life to be a bear and when things don’t go in that direction, all is good.

My husband shared an article that was covered in his Speak Out class today about Care Partnering that he thought I might find interesting. It was good information, but not anything I hadn’t seen or lived before. He knows I write about my journey and thought it would perhaps be material for a future blog. It did inspire me to write this so I guess he was right. Thank you sweetheart.

I get lots of regular emails from many different Parkinson’s organizations. It’s great staying informed but at the same time it also reminds me that we are mired in this never ending battle. Some days I would just like to open my computer and not see the latest PD news or be invited to the next webinar. It would be nice to be able to pretend, even if just for a little while, that Parkinson’s didn’t exist. While I appreciate the updates and support, it can become overwhelming at times.

I love my husband and want him to keep sharing things he thinks I might like, it’s okay that I don’t try to follow them all. I know I could disenroll (is that a word?) from the websites I do follow, but then I might miss something important. Instead I have decided not to enroll in anything more. I know that there are plenty of resources out there when I need them, I just don’t need any more right now.

I was thinking again about how busy my life as a CarePartner can get and the different hats that I wear based on tasks I need to do. This train of thought often leads to the question of which I might be able to take off. I know that I already have help with my yardwork, but what if I also had help with my house? After all, I am retired, isn’t that the time when I am supposed to be taking life easier? Why am I insisting on trying to do it all?

Is having a house cleaning service a “need”? Probably not, but it is a possibility. If I have someone helping with the cleaning, I can let go of those duties and use that energy in other ways. Granted it’s not a huge task, but it is a task that I can identify and delegate. It would free up a few hours every week, much needed hours that could be used in better ways caring for myself.

What would I do with that extra time? I really don’t know, but it would be so nice to have to figure it out. I know I would have to be mindful not to let it be taken up by additional tasks in caring for my husband. Maybe I would find a new hobby or have time to explore current ones. To actually have a couple of extra hours without any chores assigned to them, isn’t that what retirement was supposed to look like anyway?

When we first met, I was so impressed by my husband’s presence. He was intelligent and strong with a calm and capable demeanor. Working together I found him to be supportive and fun loving. We started as friends and, both having been in bad situations before, we each had a solid understanding of what we needed from a good relationship. Our friendship grew into something more as we found our personalities and skills truly complemented each other. It was a good fit, our life as a couple was wonderful, then Parkinson’s joined our team.

The changes brought on by his diagnosis were slow and not very noticeable in the beginning. The tremors started on his left side and were mostly controlled by medication. As things progressed, our roles began to flip with me taking over as primary on many tasks and my husband being my helper. We realized that might not be the best idea when I tried cleaning the gutters while he stabilized the ladder for me. Did I mention that his primary symptom was tremors? For safety’s sake (his and mine) many of those tasks eventually moved into my realm. With responsibilities shifting, there was also a power shift. The more I did, the more I had to decide how and when those things would be done and he had to let them go. It was challenging for both of us.

This shift in direction has changed the dynamic of our interactions. As he becomes more dependent on me for daily activities, out of necessity not desire, it influences who we are as a couple. It’s a delicate balance as I try to take on more without taking away from who he is. Stepping back when I’m not really needed, encouraging him to do what he can, giving opportunities to try challenging tasks, are all ways that I can support his dignity and help him express his independence. As is my understanding that what we are experiencing is not intentional but is all due to the disease he carries. Knowing why it’s happening definitely helps me accept the changes in him and in my role as his wife and CarePartner.

My husband had a fall yesterday. It had been several months since his last fall and this one caught me off guard. He was getting up from a stool in our kitchen/dining area when he said his right leg gave out and down he went. He bumped his shoulder against our dining table and landed on his hip. I wasn’t in the room with him, having just left after we finished an afternoon snack. I heard the thump and thought he had knocked the stool down. The stool was fine, it was my husband who was on the floor. 

Rushing in, I immediately reached out to help him up and then stopped myself. I actually had to say the words, “No, I can’t help you up. I can help you roll over though”, which gave me the opportunity to rethink what I was doing. It also gave him a chance to evaluate the situation and figure out what needed to come next. I then went ahead and helped him get on his hands and knees and from there he was able to pull himself to a standing position. If that hadn’t worked, calling 911 was my next step.

Things have been going quite well for the past couple of months. My husband has even been helping out with the odd chore, something I thought was impossible for us. We’ve been having better conversations and even planned an overnight trip later this month to celebrate our anniversary. Is it any wonder that just when I had let things go a bit and was taking some breathing space for myself, Parkinson’s had to rear its ugly head and remind us that it is still very much in charge?

It happened again, we lost a friend from our support group. I grieve for our loss and my heart goes out to his wife, one of the most compassionate and caring Partners I have met. I hate these goodbyes because they remind us of the inevitability of the diagnosis. At the same time, had it not been for my husband’s Parkinson’s Disease we would never have had the chance to know this wonderful couple and share in their journey. I am so grateful for that opportunity.

We first met this gentleman at a movement and speech class. He was a constant in the group working to overcome an already soft voice. He and his wife joined us in other support group activities sharing meals and workshops. She brought much grace as his Caring Partner and often showed me ways I could be more patient and kind through her example. It was this wonderful woman who introduced me to the concept of the tiny cuts we experienced every day watching our husband’s disease progress.

When we first started attending PD support groups my expectation was to learn more about what was ahead for us. I was hesitant at first not sure I really wanted to know our future. I now understand that it is not our future that I found but our present. Fellow travelers on this journey who were able to share their stories of meeting the challenges we all faced. These folks actually understood us more than our family ever could. Yes, it’s difficult to say goodbye, but without the loss we wouldn’t have memories of the good times we shared together. And they will always be a part of every group gathering even if it is just in my heart.

My husband was having what he referred to as a “low energy” day. He was tired and not interested in anything. His balance was off and nothing seemed to be working well. He didn’t feel good enough to exercise and spent most of his day on the couch napping. It was difficult for me to leave him alone, I kept checking in to make sure he was okay. I wasted a lot of my energy trying to figure out why he was feeling so exhausted. When he woke up the next day feeling okay again I realized that it was nothing we had done, his diagnosis of Parkinson’s Disease was the culprit.

If it isn’t enough that this disease makes him tired, the medications he takes also play a part. He has always said that carbidopa levodopa makes him sleepy about 45 minutes after he takes it. The dosage doesn’t seem to matter, even with only one or two pills he gets drowsy when the meds should be kicking in. He can’t skip those meds until he’s feeling better, so we always get to add that to already low days.

My husband’s condition can drain me if I let it. I am finding the best solution for those bad days is to let him be. It may be difficult for me to step away, but if it is something more serious we will know soon enough. If it’s a lower energy day for him, rest is always the quickest way through. My hovering, trying to fix something that isn’t really broken only serves to make things worse. Evidently there are days when the best thing I can do as his CarePartner is to let things go and understand it’s just his PD, even though that’s really hard for me.