We have a Parkinson’s Support Group that meets monthly for breakfast. It started as a group for CarePartners and quickly evolved to include our PwPs with one rule- they had to sit at a separate table so we could have our safe space to talk. It has become a wonderful experience and creates so many additional benefits for myself and my husband, things we never expected.

I knew we would enjoy the social interaction, what surprises me are the skill building opportunities the breakfast group provides specifically for him. Sitting at a different table for his meal encourage his independence, he cannot look to me to speak for him. Everyone at the table with him has PD so they don’t notice if his fork shakes or if he struggles to get his words out. As he practices speech and swallowing, he also has to listen carefully to follow the table conversations. They talk about their shared experiences and look for answers together. It has become a time for him to practice functional skills in a safe environment with encouragement and understanding.

When we started, I was looking for an outlet for myself, a place where I could vent, a time to share challenges I was facing with others who were living similar lives. And, it worked, I always come away feeling refreshed and ready to start again. What started with just two or three has grown so that at our last meeting we had 16 CarePartners and 12 of their spouses with Parkinson’s. It has become a very supportive community as we all find laughter and joy in the sharing of our journeys whether we have the disease or love someone who does.

I find it easy to take over and do things that my husband can and should be doing for himself whether he asks for help or not. I know that I intervene in an attempt to make life easier, but is it really? How does it make him feel when I finish tasks for him or interfere in what he is doing without being asked?

One example happened just today. It was time for his on-line exercise class and the instructor hadn’t logged in yet. I immediately grabbed my phone to call someone to get it started, my husband waited patiently to see what was wrong. I anxiously asked him how long he planned to wait, he simply said “until the class starts”. Sure enough, it started in just a few minutes and he was able to proceed calmly while I was feeling stressed out. It was his thing, I tried to take control to fix it (without being asked) and all I accomplished was to upset myself.

If I can remember to ask if he wants my assistance before I jump in, then I can provide the correct help he needs in a respectful and thoughtful way. Too often though I catch myself taking over, especially when we are in a hurry. I know that it is degrading to both of us and damaging to our relationship, yet it still happens.  My husband is a brilliant and capable man with a great deal of patience. I will learn to ask before I leap so that I don’t have to learn just where that patience ends.

It’s summer, it’s hot and I have a ton of things that I have to do outside on top of everything I do inside anyway. The task list seems endless. Unfortunately, or perhaps not, this heat makes me want to sit in a cool spot and relax rather than tackle chores. It will all still be there tomorrow anyway, what’s wrong with taking a day off? Nothing at all!

There are things that I have to do everyday that involve providing care for my husband, and things that I can put off. It is important, no vital, to recognize which is which. I am learning that it is okay to take a break and let the less important things go sometimes. The lawns can look a little shabby and the house can be a little dusty, it’s all okay as long as our basic needs are being met.

As a CarePartner, I seem to think that I am responsible for everything all the time. That is too much of a load for anyone to carry. If I try to do it all, nothing gets done well. If I respect my body and take that rest on days when I need it, the things that matter happen and I am able to take on other tasks when I have the capacity.

Staying grounded in your own self is vital when you are a CarePartner. I need to be in touch with my physical and mental health at all times. I find that staying connected or “in the moment” allows me to live a fuller and more positive life. I am better prepared for challenges that arise either with my husband who has Parkinson’s Disease or with things that have nothing to do with his diagnosis. 

It’s not always easy to achieve that sense of personal awareness that keeps me moving forward. I can easily get caught up in the busyness of each day and lose track. Those are the times when it is especially important for me to slow down and check in with me. Am I feeling stressed, frustrated, tired, hungry? What do I need to make it through this day? How can I be kinder to myself?

Some would say that trying to stay constantly positive is an unrealistic expectation, I think of it as a worthy goal. If I am able to find one positive thing happening in my life, it gives me a reason to smile and be grateful. That feeling of gratitude reminds me that there is good happening around me and guides me back to my positive mindset where I can then continue my day with a lighter load.   

My husband was always an early riser, sleeping until 7 am was unusual for him. Now, his mornings are different as he attempts to get out of bed by 7 to take his Parkinson’s medication, then returns for a cuddle until around 8 when he feels ready to face the day. Those mornings we do get up before the meds kick in are tough, and I find that I need to allow extra time and be close in case he needs any additional help.

Early afternoons are another “crash” time for him. We have lunch by 11:30 so he can take a nap. This mid-day break seems to recharge his energy levels until around 5 when he usually doses a bit while watching the evening news. This schedule holds true whether we are active or not and so I try to plan our lives around it to make life better for both of us. A well-rested partner is much easier to work with than a tired, cranky one. (I’m sure he would say the same about me.)

His morning issues probably stem from a lack of dopamine in his brain and his first dose of carbidopa-levodopa is his highest. We are not sure about the other times, perhaps it is a side effect of the medications themselves, perhaps it is just the general fatigue that accompanies a diagnosis of PD. The point is, we have learned that it is best to respect what his body is saying and work around these low energy times. When he gets tired he rests, appointments and all other activities can wait.

My husband reads these blog entries before I post them. I think of him as my editor, but I also want to make sure that I am not sharing things about him without his knowledge and okay. Admittedly, there have been some entries that we had to talk about before I posted them. I really try to stay focused on my journey and, when talking about his challenges, try to keep it on how those things impact me. 

When we first started on this new part of our lives over a decade ago, one of the first things I did was to seek out a co-worker whose father had PD. She understood my fears and listened as I spoke of the uncertainties we were facing. I learned then just how important it would be for me to have other people to talk to for support as I faced the changes his diagnosis would bring.

I have found support groups, personal friends, family members who have helped me as I continue to adapt to the daily challenges of being a CarePartner. I am careful when speaking about what is happening to us and always to come at it from the perspective of the role I play. It is not for me to openly discuss the PD symptoms that interfere with his daily activities, that is his story to tell. How I deal with the emotional and physical toll of being a CarePartner, that is mine.

Wow. Yes. Oh my, and patience can be the most difficult to attain at times too.  I lost it completely the other night, yelled at my husband, the dog, the world in general. It was all triggered by something so minor and the explosion was so out of character that I was still apologizing the next morning. I try so hard to remain calm and find healthy ways to vent stress in my life, but it doesn’t always work.  Usually when I am feeling overwhelmed, I can walk away. This time I didn’t realize it in time and really wish I had.

I know that when I have an outburst it usually comes not from a place of feeling overworked or even overwhelmed, but more from a place of feeling out of control. This latest event comes as I am trying to help my husband transition to his new reality post-DBS, as we are both attempting to navigate a post-pandemic world and then our aging dog is showing some signs of incontinence. These are all things that I don’t understand nor do I have any control over them. I have enough uncertainty in my life and certainly didn’t need one thing more, so I blew.

So, yes, as a CarePartner I need patience more than anything. I need patience with my partner and I need patience with the world around me. Most importantly, I need patience with myself. I need to really accept that things are going to happen that are out of my control.  Then, when they do happen, I need to step back and take a breath, find my patience, and move forward into whatever the universe has in mind. It’s going to happen anyway, I might as well own it.

My husband had an appointment with his neurologist yesterday. Earlier this week we sat down and had a conversation about where we both felt he was, especially as it has been 6 months since he had DBS surgery. I asked him to tell me what he thought were the 3 best things (pros) since the surgery and the 3 worst (cons), and I did the same. We wrote it all down and took it to the appointment with us. What I found interesting was that he struggled to find 3 good things but was quick to come up with the bad. I, on the other hand, had lots of pros and only 3 cons. Our perspectives definitely differed. It concerns me because if I am so out of sync with what he is thinking, how can I be providing the support he needs?

I know that we will see things differently, he is living the disease and I am just an observer. What this “check-in” has told me is that I need to be listening more to what he is saying instead of depending on my own observations. Just because he presents as more capable and in control to me doesn’t mean that is what he is feeling inside.

I need to learn to use my ears more than my eyes as we move forward. If I truly want to support him in his struggles, I need to hear and understand what he is experiencing. I can talk about what I am seeing and encourage him to continue trying, but in the end I need to respect his perspective. Because it is his journey, I’m just along for the ride. 

Actually, I wanted to say that those moments when you are truly on your own may be the only thing that stands between you and the craziness of being a CarePartner, but felt that was perhaps only true for me. Let me explain…

When I am with my husband, no matter what we are doing or where we are, I find that I am looking out for him. I try to access situations that might be difficult and make it easier. I am constantly on guard. Where does this hyper-vigilance come from? Is it a necessary component of my journey as I try to provide care and support for my husband? Or, as I suspect, is it just adding a layer of anxiety to my life that doesn’t really help anyone?

I don’t sleep well, haven’t for years, but it means that I am often roaming the house in the middle of the night. What I have discovered is that during those late-night hours while my husband is sleeping soundly, I am finally at ease. I can escape from the daily concerns of being a CarePartner and let it all go. It has become the silver lining to my insomnia cloud.

I recognize my need to bring more opportunities to let things go into our daily lives. I am as responsible as my husband for this co-dependent lifestyle and am working on going places without him, even if it is just to the store. There may be a time when I cannot leave him alone, I need to make sure that I am setting a precedent now so I can find a solution then.

It’s tough. We learn about this disease a little bit at a time as we watch the progression in our loved ones. In our case it started out as a tremor in his left arm. Within a few years, that tremor had moved up his arm, across his face and down the other side. His shaking became so pronounced that he couldn’t hold a knife to cut his food and, as he put it, shared his sandwiches with everyone around. Along with the tremor came stiffness and fatigue.

Thankfully, most of his challenges seem to be physical, cognitively he seems to be okay other than his brain does process things much more slowly. It takes more effort to get things done from walking to talking so many of our everyday tasks that I take for granted have become a major chore for him.

As his symptoms grow, I see less and less of the man I married and I am not sure how to reach him. So, I am trying to adapt. I cook foods that don’t require cutting, I avoid complicated conversations, I am there when I think he might need help with daily activities. Most of all, I am trying to hold fast to the love we share and make the life we have meaningful.

I wrote these words just a few months ago. Since my husband’s DBS surgery, we are no longer fighting the tremors or the stiffness, our new battles are with speech and balance. We are in a much better space, but the reality of Parkinson’s Disease never stops, it just finds new ways to challenge us. I always need to remember that our love is stronger than anything PD can throw our way and to treasure every moment we have.