We recently had some friends over for a backyard happy hour. I spent a lot of time cleaning up our yard with my husband helping as much as he could. The day before the event, I woke to find 2 large mole hills in the front yard and 3 in the back. It was disheartening and a battle I just didn’t have the time or energy to fight. So, instead I went out and stomped the heck out of all the holes and let it go.

On the other hand, our heat pump recently died. It was 19 years old so we shouldn’t have been surprised when it couldn’t keep up with summer extremes. Neither of us are able to deal with the heat like we did when we were younger. I made calls and we are scheduled for a new unit next month with a local company who loaned us a temporary unit to get by for now.

Recognizing home challenges that need to be tackled is fairly easy, it is more difficult recognizing which challenges I need to take on with my husband and which I need to let go. Do I speak up about his swallowing issues when I hear him choking or remind him to stand “tall as a tree” when I see him slouching? I struggle constantly to find the line between supportive CarePartner and nagging wife. I am learning to look beyond the momentary challenges to the bigger battles he is fighting. There are times when it takes too much energy for him to stand tall or think about how he swallows. Those are the times when I just need to love him and let everything else go.

I have studied Psychology, I have worked with families in crisis, I helped my mother when my father was diagnosed with PD and then later, I was there for her when she developed dementia. Still, when my husband called me and told me that the neurologist said he had Parkinson’s Disease, I felt like someone had punched me in the gut. I was lost, confused and so sorry I hadn’t gone to the appointment with him.

Knowing things and being able to share them with others is one thing, living them is a totally different experience. All those wise words that I had put out there started to come back to me, but how could I apply them to our situation? My husband, my best friend, had just gotten this life changing diagnosis, how would we get through? I was overwhelmed and unprepared for this new reality.

So, I went back to the basics. I acknowledged that I didn’t know what was coming and made a commitment to walk alongside my husband wherever the road might take us. I started researching options for what life might be for us moving forward. I started living life day to day and learned to appreciate what we had regardless of the disease. And, I never missed another of his appointments.

However, I learned a long time ago that crafting my questions carefully was an important skill I needed to develop. I try not to ask yes/no questions unless they are really appropriate. Things like “Did you take your meds?” or “did you shut off the water” need definitive responses. Whenever possible I try to use open ended questions that require more than a one-word answer. An example might be “Which of your meds did you take now?” requiring him to think and respond. It might still be only the name of the medication but it has required more brain effort.

Another thing that I have learned is only to ask questions that I really want him to answer. If I have a project I am working on and I know how I want it to go, I don’t want to ask for his advice because he will want to do it another way. If I only have chicken defrosted for dinner, I might ask “how would you like the chicken cooked tonight?” but I would not ask what do you want for dinner because he would ask for beef.

I do ask my husband how he is feeling every day. It helps me know what to expect from him and helps me plan my day. Just this past week I had a very busy day scheduled and I needed to know that he was going to be okay. Unfortunately, when I asked him how he was doing he replied that it was a “low energy” day. I tabled some of my projects and we took the day a bit slower so that he could rest and recharge. Asking appropriate questions sends me in the right direction as I work to provide the care he needs.

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.