My needs, his needs, whose needs come first? In the midst of structured days, scheduled appointments, exercise regimes, how do we compromise to make sure everyone is okay? In our house we do it through communication and by being flexible.

The holidays an be a hectic time for us with additional activities that interfere with our everyday lives. We have a lunch date scheduled with family which means my husband will miss his exercise class for the day. Knowing how important it is to him, we are talking about how to make it up. We have exercise videos we can use or we exercise another day, a session we wouldn’t normally be doing. However, that session falls on one of the times I am out of the house volunteering. It’s like dominoes sometimes as we try to juggle his needs with mine. Thankfully, the folks I volunteer with know that his needs always come first and they are willing to work with me on rescheduling my time.

I can be flexible in fulfilling my needs, him not so much. The structures we have in our day are vital if he is going to continue his battle against PD. Sometimes it may feel like I am bending over backwards, but I am thankful that I can be that unstructured and be available to support him in whatever he needs. And when I kiss him goodnight at the end of each day, I can honestly say that my most important need is there right next to me in our bed.

My husband has always had the best attitude about his diagnosis. His focus is on what he can do rather than what he can’t. This “can do” attitude inspires me to do better and creates a positive environment that surrounds us. He is not under the delusion that doctors will find a miraculous cure for PD, but rather that he can still live a good life in spite of his illness.

There are things I did before that I can’t do anymore thanks to this diagnosis. I could sit at home and feel trapped or I can find new ways to engage. As his symptoms progress, we are less out in the world and so I reach out through the internet, connecting with others through webinars and support groups. Social media makes it possible to stay in touch with friends and family. We both read the local paper and watch the local news channel to stay informed about happenings in our community. We make a point to go for walks in our neighborhood and do a weekly grocery run or perhaps have a meal. I know that my in-person encounters are down but still try to maintain some social connections with others.

This shared diagnosis has helped us rethink some of our previous activities. We are spending more time together and it is often not what we expected. I never dreamed we would be working out together, but that has been a healthy change for both of us. I am, on occasion, taking on the role of personal helper. He also continues to help me with minor household chores. Our love isn’t diminished by the challenges we face, instead it is strengthened as we work together to figure out where this path is leading us. Our world isn’t smaller, it’s just become laser focused on those things that matter most. 

I like to talk things through. I can process better by verbalizing a problem and then brainstorming solutions to it. My husband has a very different method for problem solving. He analyzes the situation quietly and then moves forward. When I find him deep in thought, I can’t help myself, I like to make suggestions. I try not to be upset when he chooses to go in a totally different direction. What works for me is not necessarily going to work for him. I am not here to fix his issues; I am here to support him in finding a way to face them.

My husband grew up wearing button shirts. He was required to wear them in his work and they became his constant. The only variance was short sleeves in the summer. Parkinson’s made it difficult for him to deal with the tucked shirt and undershirts. I offered to help and suggested that we shorten the undershirts or that he not worry about tucking the shirts in. These options didn’t work for him, instead he asked me to take him to the store where we bought half a dozen sweatshirts. The button shirts hang in the closet and he has found a new “look”.

Stepping back is not always easy for me. I want to make life easier for my husband but in making it easier I need to make sure I am not interfering with his independence. His choice to switch to sweatshirts allows him to continue dressing himself in the mornings which is important to him. The option I offered could have taken that away and PD has already taken enough from him. Support means loving and respecting him enough to let go and let him figure things out. And I’ll be here if, and when, he asks for help.

We have a busy day planned for today. We are going to see my husband’s neurologist this morning and our cat sees the veterinarian for her exam this afternoon. In between the two we hope to have lunch, get a nap for him and exercise for an hour with his boxing program. It’s the kind of day that I usually try to avoid with a lot crammed into a few hours. I expect to feel rushed at least once today and hope that I can manage it with patience and kindness. Is that a reasonable expectation? I certainly hope so.

I have overscheduled us today so I am not adding anything more that isn’t absolutely necessary. Acknowledging the potential for overload is my first step in avoiding it. Lunch will probably be fast food that we pick up on the run, but that’s okay. There won’t be any laundry, housework or other chores today, my plate is already full. And, I will take every opportunity to slow down and breathe as I move through everything we have on our calendar.

Knowing that I shouldn’t try to do too much in my role as CarePartner and actually accepting it are two different things. When I am exhausted, I am not able to do the things I need to do let alone the things I want to do. I realize that I have a load- caring for my husband, caring for our home, caring for myself, and when things got too busy something has to suffer. Unfortunately, it is usually me. Recognizing what is coming, I can work today to make sure that when I finish, I am feeling good about what we have accomplished and okay about what was left behind. After all, there is always tomorrow and sometimes procrastination is a CarePartner’s best friend.

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.