Meeting with a medical professional can be stressful. My husband and I find that if we talk about upcoming appointments and make a list of topics we want to cover, they go much smoother. Discussing things ahead of time allows us the opportunity to think about concerns and alleviates a lot of potential misunderstanding. Sometimes we make separate lists and compare them to see where the differences are, it can be eye opening.

In addition to preparing for our time with the doctor, I need to make sure that my husband is prepared for the change in his schedule. I try to make appointments at times when his meds are working and that don’t interfere with meals or exercise. No matter what time the appointment is, my husband needs to know when we are leaving the house, how long we should be gone and how this might impact his normal routines.

Finally, I prepare myself for the appointment. I revisit our list of concerns to make sure that things I need to discuss are included so my voice can be heard. I look at my calendar to see how my routines are going to be impacted. Do I need to postpone a chore or, depending on the timing of the appointment, do we stop for a meal on the way home so I am not stressed pulling lunch or dinner together? It may be his name on the medical chart but I know that interactions with his doctor are essential for both of us and I want to do everything I can to make them productive and stress free.

I had an opportunity to participate in a holiday event put on by local organization called “Caregiver Christmas”. It was advertised as being for anyone who provides care for a family member. I was hesitant to sign up because, as a member of our support group said, I can afford to buy the things I need. Thinking about it further, I realized this event wasn’t about income, it was about the role I play as CarePartner and the burden it places on my life. It was about recognition for the life choices I make out of love. I decided to go ahead and register for the drive through event and am so glad that I did. 

The program was set up in a shed at the fairgrounds. As I entered the covered area, I was immediately overwhelmed by emotion. There were dozens of people dressed in holiday attire waving and thanking me for what I do. Tears started to flow down my cheeks. I drove through slowly and at the end of the line there was a huge table of gift bags volunteers were handing out to each participant. I rolled down my window and a woman asked if I needed one bag for a female. Being the good CarePartner that I am, I responded “No, I care for my husband, a male.” She looked me in the eye and said, “Oh, no honey, this is all about you.” I choked back my tears and drove on.

This event made me stop and think for a moment. I don’t often consider how things would be different if I weren’t here to care for my husband. What would he do and who would be doing it for him? Would he still be able to live independently or would he be in a senior housing facility? What impact does the support I provide have on our community as a whole? I am so thankful to the people who organized this event to remind me that what I do matters not only to my husband, but to others as well, something I don’t acknowledge enough.

Whether it is temporary or long term, changes to our daily schedule throw my husband for a loop. His tremors increase and he seems to fatigue easily. His days are normally structured around meds, meals, exercise and rest, there isn’t room for spontaneity. I have accepted that this regularity is what he needs to be able to fight his diagnosis effectively. Complications do sometimes set in when we need to interact with the outside world.

Workers come into our home from time to time to provide services for us. Most companies are willing to set either morning or afternoon appointments but still, it interferes and causes stress. We recently had our heat pump replaced and workers were here for 2 days, it was a difficult time because my husband couldn’t really let go of their presence and all of his daily activities were impacted. There were naps that didn’t happen to exercise classes that were interrupted or postponed. It took a couple of days after for him to really settle back in.

Knowing that these challenges will always face us, I try hard to make sure that our appointments are at good times for him. We regularly talk over anything that is coming up so we can make adjustments to our schedule as necessary. Discussing any potential disruptions allows us to make a plan that works rather than just trying to make do when the change happens. He may still miss a nap or his meal may be a little late, but being aware and proactive alleviates some of the negative impacts to help us move through and get on with our lives.

Sharing laughter with my husband lightens the load for both of us and resets our relationship. I know that he hears a lot of dictatorial comments from me, stand up straight, walk with purpose, stop mumbling so, when we can take a moment to enjoy something together it really helps. What I find to be even more helpful in my role as CarePartner are those spontaneous moments that bring on a smile for no reason at all.

There is a pot of calendula in our backyard that blooms year-round. Whenever I look out at those golden blooms, I have to smile. The resilience and openness that these blossoms represent is a reminder of how I want to live my life. The moment is accompanied by a feeling of release, a lightening of my spirit. It takes only a few seconds but can refresh my perspective on even the darkest of days.

Other opportunities for finding moments of personal peace include snuggling with our cat, watching the hawks circling in the field behind our house, noticing my husband as he naps or reads. These private moments always bring a smile to my face, warmth to my heart and make each challenge just a little bit easier to face.

I learned long ago that driving is a complex skill that takes years to truly master. Nowadays I get in the car without much thought, so many components of driving have become automatic. But wait, isn’t that one of the first challenges my husband faces, his autonomic systems don’t work anymore? Backing out of the driveway, I look right and left to make sure the road is clear. Oops, again the stiffness that comes with PD impairs my husband’s ability to do this. Heading down the street I see my neighbor backing out and hit my brakes, but would my husband be able to react in time to avoid a collision? At the end of the street there is a stop sign, so I pick up my foot to begin braking. What happens when my husband’s foot decides to freeze to the floor of the car?

Driving is difficult, as shown in the above scenario, and I was not even out of my neighborhood yet. It is also difficult to ask my husband to give up something that has been part of his life for 60 years and, to many of us, defines our independence. In our case, we looked at the changes Parkinson’s had created in his body, the tremors, the stiffness, the slowness, and spoke honestly about how those things might impact his ability to drive. He started limiting his driving to just daylight hours, then to locations very close to home before finally realizing that it was safer to let me take over.

I don’t always feel like driving and thankfully there are many different services available today that allow us to get around without getting behind the wheel ourselves. The traditional taxi has been joined by Uber, Lyft, and most communities also have senior programs that can accommodate wheelchairs or walkers. My husband and I don’t hesitate to let someone else do the driving when we are on vacation, why not extend that same concept to local transportation? I wear enough hats as a CarePartner, it is okay if I choose not to put on a taxi driver cap too.

When we get together with family and friends over the holidays, I am tempted to open up and talk about Parkinson’s and the impacts it has had on our lives. I want to share the trials and help them understand what is happening. But then I remember it is not my story to tell. As a Partner on this journey, it is not my place to disclose what is happening to him because that would be a breach of his privacy and could seriously impact our relationship.

Since my husband has disclosed his diagnosis to most of our friends, it is okay for me to be open about the challenges his diagnosis brings to my life as long as I don’t become totally engrossed. It is important that I not try to speak for my husband, he has his own voice and needs to use it, but speak from my perspective. I also need to remember that there are positives that go along with this diagnosis and always emphasize those as well.

What else can I share? I can talk about things I am doing in support of my husband without bringing Parkinson’s into the discussion. I can ask advice on gardening, I can talk about local events, I can have a normal conversation and let PD go for the day. I can take some time to be me, the person who is here when the CarePartner isn’t.

My husband is a very intelligent and accomplished man with multiple degrees and yet now, thanks to his diagnosis, it sometimes seems like I am talking to a child. His brain processes are slower and without the autonomic supports we all depend on, so all communication needs to be clear, concise and consistent. He struggles with what should be easy tasks and I find myself repeating instructions and using simple terminology as I try to help him figure out what comes next.

I often see this in our exercise classes. We have four different coaches that we work with on alternating days. They are all excellent instructors, but they also all do things just a little differently. There are basic moves we do in every session yet each of them has unique ways of cuing them. It’s great because it challenges my husband to use his brain and his body, but it can be frustrating too. I find myself stepping in, showing him the move that we did just yesterday. Once he makes the connection, he is usually able to figure it out on his own.

I know that none of this confusion is his fault, it has to do with pathways within his brain that can change from day to day. Thank goodness he still has the capacity to develop new neural networks that can sometime make it easier for him. And, I am working on being patient and communicating at a basic, yet still respectful level, as we navigate the reality of life with PD.

My husband has a philosophy, a way of dealing with his diagnosis that inspires me. He always looks at what he can still do rather than looking at what PD has taken from him. I struggle to remain so positive, but his constant presence helps. He knows there are things we have both lost and instead chooses to focus on what we have.

Coming from that approach, I am so thankful for the many things he is still able to do for himself. I am thankful that he is open to trying new things and also that he is able to ask for help when he needs it. I am thankful for his medical team who have helped us navigate this disease for the past decade. I am especially thankful for treatments such as Deep Brain Stimulation that have helped us reset some of his most challenging symptoms. I am thankful for his exercise team, especially the fact that I have been able to tag along, because I am more fit now than I have been in many years. And, I am very thankful for all the people who have come into our lives because of the support groups we attend. They are friends I hope to have for life.

I struggle sometimes when I think about the things we would be doing differently had PD not come into our lives. I understand that I must allow myself time to grieve those losses, but one look at my husband always makes me feel better. He is still here and we are still fighting this illness together. For that I am truly and wholeheartedly thankful.

Creative thought is essential when facing a new challenge and may even help you find a better way to overcome an old one. If I step outside of a situation and try to observe it with an objective viewpoint, I can often see that I am making things more, not less, complicated than they need to be. I also often find that I am taking care of my husband’s needs with no consideration for myself in the moment.

I am planning for the holidays, wondering what they could look like if I put my needs first. For one thing, I would not spend the day cooking and would instead be able to sit and enjoy family time together. We might go out for a walk in the neighborhood so they could experience a bit of our lives and the things we enjoy doing. It wouldn’t matter if the house was a bit messy so I wouldn’t spend a week prior cleaning carpets and washing windows. I could bake some family favorites to share but it would be on my schedule and my favorites would definitely be included.

Expanding that even further, how would all of our days look if I put my own needs first? It would be nice if I weren’t so tied up with chores around our home, perhaps next year we finally hire that yard service. That may not seem like a creative approach but it is definitely outside of the box for me as I’ve been mowing lawns since I was 10 years old. I’m not sure what else would change because, after several years of trial and error, we have developed a routine that works for both of us. I use my husbands “on times” during the day to do things for myself. I get out of the house a couple of afternoons each week while he is resting to volunteer at a local museum. If I need an additional break, we talk about it and find a way to make it happen. Most importantly, I have accepted the reality that meeting his needs meets my needs on a primal level and that is core to my owning the role of CarePartner.

There are things that my husband can do and things that are just outside his ability zone. For example, he used to cook and enjoyed preparing dinners for us. When his tremors became too intense for it to be safe, he decided to give it up.  He does still prepare his own breakfast, but that only involves a toaster or a microwave and I am always close if he needs assistance. What if, instead of giving up completely, we had done an activity analysis to see which parts of preparing a meal he could still do and where he needed support?

I am borrowing this concept of doing an activity analysis from the world of Occupational Therapists. They regularly analyze tasks to help their clients figure out how to manage life’s challenges and live independently. Their analysis takes a deep look at the what needs to be done, breaking it down into smaller chunks and evaluating brain and body functions needed for success. Obviously, we would not need to dig so deep to figure out what it would take for my husband to cook a meal. We just need to identify the basic steps so we can figure out where he might need to modify the process and where he might need help.

Why am I looking into this now? As my husband’s illness progresses, his capabilities are going to decline. A technique like this will allow us to analyze exactly where his difficulties are and modify activities so that he can do them for himself. We can start by deciding together on something he wants to accomplish, then writing out a simple list of the steps it takes to complete it. Looking at each step honestly helps us see if it is something he can do or if it needs adaptation to meet his skill set. We can look at where I might need to step in and help, but only as a last resort. My goal is to allow him more independence and lighten my load by giving back some activities and expanding his capacity. (and maybe get a good dinner out of him again sometimes!)