As my husband’s symptoms progress, I am being asked to take care of more around our house. Often these are things I have never done before and really have no idea how to do them. A case in point, I recently had to troubleshoot a problem with our dishwasher.

When I face a new challenge, I have a tendency to jump right in and have bungled things up in the past so decided on this occasion to try a smarter approach. Instead of simply starting to take things apart, I talked it over with my husband. He suggested checking the appliance manual, which we found on-line. Armed with this information, he stood by while I went to work. He has become the supervisor, helper, clean-up crew and I got to be the technician. We removed and cleaned filters and found a twist tie that had gotten into the lower drain. I removed the item and, with my husband’s help, I was able to put it all back together with no leftover pieces. We were back in business!

Life is so much easier when the challenges are shared. I sometimes hesitate to talk with my husband because I don’t want him to feel displaced when I pick up one of his chores, however, I may need his advice since he has experience and ideas on how it should be done. We may disagree on the approach to a task, but at least we have both given our input and neither of us is carrying the load alone.

I sometimes think that Parkinson’s Disease is a jokester because while it is slowing my husband down, it has sped my life up tremendously at times to make sure everything is done. That is why it is essential for me to stop, take a deep breath and be fully present whenever I can. Granted I may find myself fully present and knee deep in laundry or in the middle of cutting the lawns, but wherever and whatever I am doing, I need to know that it is okay.

While I may not always be able to see what is happening, my husband does. He recognizes the extra effort I am putting out and encourages me to slow down or to let things go. I was working on a project out front yesterday and had just finished when my husband asked if I would like to join him on the patio. He had brushed off our garden swing and put out the cushions. It was amazing to sit there together and enjoy the first sunny day in a long time.

I know the work I do is important and keeps our home life going, but at the same time I need to make sure that I am engaged as part of that home life. It is easy to become a housekeeper, cook and caregiver, I don’t want that. I want to be a CarePartner, aware and loving in all I do to support my husband as we move forward together on this journey.

I am beginning to think that my husband’s brain is working harder than ever thanks to PD. The circuitry that used to handle the day-to-day actions of living has gone haywire and now every move has to be thoroughly thought through. In an effort to better understand the challenges he faces, I turned to the American Parkinson’s Disease Association website where Dr. Jennifer Goldman from the Department of Neurological Sciences at Rush University Medical Center writes “Executive dysfunction is one of the most common cognitive changes reported in PD.” She goes on to say that this disease and changes it brings to his brain can interfere with my husband’s ability to plan or organize his day and multitasking or even just changing from one task to another becomes difficult.

It doesn’t stop there, working memory and visuospatial functioning are often impacted. The struggles my husband faces trying to do daily tasks? That’s because his working memory doesn’t retain the needed skills as well anymore. His visuospatial functioning can be impaired which causes an inability to accurately judge where his body is in the world around him and creates balance issues.

What can I do to help? First, I need to make sure that his neurologist knows what is happening and advocate for cognitive testing to check for signs of decline. There are medications that might help, but the most effective tool we can use is the same as the one for physical challenges, he needs to exercise his body and his mind. He needs to move his body and work his brain so that the neurons know what to do and can keep on doing it. Puzzles, games, reading, yoga, boxing, walking and talking are all great activities to stave off mental deterioration and help keep us both active and alive and in the battle with PD for another day.

To read more on this fascinating topic, click here to check out Dr. Goldman’s entire article entitled Cognitive Changes.

My husband’s initial diagnosis reminded me of the difficulties my parents faced when my father had Parkinson’s and I wanted a better pathway for us. Thankfully, we have access to resources that didn’t exist thirty years ago and we went to the internet to see what was out there. We quickly learned to let go of any assumptions about what this diagnosis would mean, there was no standard profile. Even though there are some basics characteristics that lead to the diagnosis, PD impacts everyone differently and the symptoms vary widely. Lots of things could happen, we were already experiencing the tremors, what else might be coming? Some of the alternatives were scary, how would we know what to prepare for?

As we explored the possibilities, we talked openly about the possibility that my husband could be facing advanced movement disorders and cognitive challenges. We did the what if’s and discussed plans for our future. What happens if he can’t drive, what if he develops hallucinations, what happens if I can’t provide the care he needs, we had a lot of conversations and tried to make plans. It was difficult to talk about but we knew it was essential to have the conversations.  We both realized there might be a time when he wouldn’t be able to participate rationally anymore, we needed to be prepared and I needed to know what he would want.

The conversations were difficult and are ongoing, the point is that we have opened those doors. Some of the challenges we discussed, such as driving, have already come and gone, some we may never face. My husband realizes that there may come a time when I have to move beyond difficult conversations with him to make even more difficult decisions by myself and now is the best time for him to provide input. We still can’t be sure where this journey will take us so we continue to talk, we continue to plan, and then we move forward and live each day to the fullest hopefully ready for whatever tomorrow will bring.

Being a CarePartner for my husband has definitely made me stretch and rethink my capabilities on numerous occasions. Who knew I could wield an axe and split firewood? (My father was a lumberjack; he would be proud.) And, while it wasn’t something I thought I would like, there are days when that exertion is really a great way to let go of pent-up stress and frustration.

When I am facing a new challenge, I try to be open to the possibility and take a chance. If I allow myself the opportunity to succeed, I may develop a new skill. I will definitely find out something new about my own capacities. Even if I fail, at least I know I tried and can better determine the help I need to finish the job.

In the example of the firewood, I quickly learned what my limitations are. I can chop smaller pieces of wood with a hatchet and can do some medium chunks with the axe, but the larger pieces need to go elsewhere. I have neighbors with fireplaces and they are more than happy to respond to my “free firewood” signs. The bottom line is that had I not tried, I would have missed a great opportunity for personal growth and some wonderful winter fires.

It is a beautiful day today, the sun is shining and there are light, fluffy clouds overhead. It is inviting us to get outside and enjoy the day. This weather definitely makes it easier to have a positive outlook and teases us with the prospect of better days ahead.

Positive feelings for me can come from something as simple as an unexpected smile or kind word. They can come from a sunny day or even a ray of sunlight sneaking through the clouds and rain. Recently my outlook improved when I received a message from a friend I hadn’t heard from in a while, it really doesn’t take much.

Having said all of that, a sunny day doesn’t change the basics. My husband still needs to take his meds and we need to adhere to our meal and rest schedules. If anything, I may need to be more vigilant as he reacts to the better day and pushes beyond his limits to enjoy it. On the other hand, I don’t want to be the PD police and will try to encourage his fun while we both share a good and a positive day.

My husband has good days and bad days thanks to his Parkinson’s diagnosis. On the good days it feels like we can do anything we used to do; on his bad days, I just want to get the basics done and get past it all. Unfortunately, we can’t know which type of day we are having until it is upon us and this means we always have to keep an alternative plan for the day ready, just in case.

Bad days can look like my husband’s disease is progressing quickly. The other day he seemed rather unsteady on his feet, does that mean that he is losing control of his balance? Do we need to start shopping for a walker? No, what I needed to do was stop and think. We limited our activities, waited and watched. Sure enough, the next day he felt better and more in control.

I used to wonder if it was something we were doing to cause the challenges but then I realized that this up and down happens to everyone with PD. It doesn’t matter if he has slept well or what he had to eat. It especially doesn’t matter whether we have plans or not, the good and bad days will come as they will. I just need to be aware of where he is and not overreact since I know that each day on this journey is distinctive and irreplaceable. I need to remember to treasure them all.

It has been a difficult year, finding ways to meet my personal needs while in a locked down environment with my husband due to the pandemic. I miss our social interactions both in and out of our PD network because they gave me a sense of belonging. I miss being able to do my volunteer work because it gave me a sense of purpose. I miss being able to go out for fun because it made me feel alive.

It hasn’t all been bad, I am using the internet more to connect with others for that sense of belonging and know we will be together again someday. I haven’t found a replacement for my volunteer work, but have gotten involved in additional projects here at home that help with my sense of purpose and get me out of bed in the mornings. I am learning to look for fun in new and different ways and to take advantage of every opportunity that comes my way. We have been using takeout and outdoor dining to explore restaurants in our area.

I know I am the least effective as a carepartner when I am not taking good care of myself. If I am tired, hungry, or just feeling out of sorts, it is reflected in my interactions with my husband and that is not good for either of us. I need to do whatever I can to make sure that I am healthy in both mind and body, and that my needs are met so that I can be here for him when his needs exceed his capabilities, I know he would do it for me. If that means ZOOM meetings and takeout, so be it, I’ll get through.

Living with someone with a chronic illness can mean that you walk on eggshells all the time afraid to upset them or your delicate home balance because, after all, they are sick and not responsible for their actions, right? Wrong. My loving husband occasionally did boneheaded things before he was diagnosed with Parkinson’s Disease and that hasn’t changed. I still get frustrated with him, not with his disease, at times and need to let him know.

If we are going to have a healthy relationship, we need to be able to disagree and, yes, even argue at times to clear the air and move on. I need to be sure that whatever he has done is something he has control over. It is not okay for me to get angry at him because it takes him longer to dress and makes us late unless he has intentionally stalled. It is not okay for me to be upset with him when his tremor causes a spill or a mess unless I have asked him to wait and let me help. It is perfectly okay for me to be angry at him when he does things he knows he shouldn’t, especially those that could be dangerous for him.  

It is a fine line learning how to maintain a positive and respectful relationship when dealing with an illness like PD that can change your partner both physically and mentally. My litmus test for whether I should be angry at him or not is whether what he has done is something he might have done before. If the answer is yes, then we start with “what on earth were you thinking?” If this is not something he would have done before, I assume Parkinson’s is to blame and then we can be angry at the disease together.

When I anticipate some upcoming event or life change, it is usually based on my perception of what it should look like which may or may not be real. I can only work from what I know as I consider what is coming. When my husband was diagnosed with Parkinson’s Disease, I immediately started looking for the same signs and symptoms my father had shown. I was expecting the tremors, followed by freezing, and accompanied by dementia. I was terrified of what this diagnosis could mean for us.

Thank goodness we had a very good neurologist who assured us that everyone’s journey with this disease is unique and we shouldn’t base our future on anyone else’s experiences. As they say, “when you’ve seen one person with Parkinson’s, you’ve seen one person with Parkinson’s”. He and his Nurse Practitioner helped us work through those early years and gave us information about resources and supports that would help us prepare for what might come instead of fearing what we thought would come.

Now, when I start to get anxious or have concerns about something happening within our PD world, I turn to my support group or to the many resources on-line. I look for good information so that I can make positive preparations for anything that our future might bring. No matter which direction this diagnosis takes us, we will be informed, prepared and ready to face it together.

For a good perspective on what a PD diagnosis can mean, check out this Symptom Map from the Me over PD website.