Being a CarePartner for my husband can be tough at times. Added to that are the tasks associated with caring for our house and I don’t often feel like laughing. Instead I feel tired, cranky and overwhelmed and there is nothing the least bit funny about it.

A great example of this happened the other day. I was outside trying to clear up some of the millions of leaves that had fallen in our yard from the oak tree next door. As I leaned over to pick up a batch of leaves, my glasses slipped down on my face. Unconsciously, I pushed them back up on my nose then realized just how wet and muddy my hands were. I stood up straight and saw my reflection in the window with the streak of brown across my cheek. Trying to wipe it off simply left more of a mess. Laughing at the absurdity of trying to clean it off with mud covered hands, I gave up trying and continued with the leaves.

Finding humor wherever it may be definitely gives me a different outlook on my days. Are my hands too stiff to open a jar? Is the laundry tangled into a knot and banging in the dryer? Did the dog (or the husband) just track in muddy footprints across my freshly mopped floor? I could get angry and yell which would upset the entire household, or I can look for the silliness, find a laugh, and share that. Perhaps it’s the face I make as I struggle with the jar or a song I sing to the beat of the dryer. Maybe it’s tracking the footprints to see where they lead and laughing with the perpetrator. Life is too short and there are enough things to stress about, let’s find more things to laugh about instead.

It is interesting how regimented our days have become. I was looking forward to my retirement as a carefree time with no alarms and no schedules. Most days we don’t have morning alarms but we do try to wake before 8 am to accommodate his medication schedule. There are pill alarms that go off five times a day and, since he shouldn’t eat within one hour of taking his medication, our meals need to be timely. We have two quiet times during the day, one right after lunch when he naps for about an hour and then again early evening when he drowses while watching the news. His exercise class is at 1 pm three days a week, at 11 am twice a week and he often adds stretching classes at noon on the weekends. We don’t have a lot of open time in our days.

We have learned that having a shared calendar is a lifesaver. Information about appointments and activities goes on both of our phones and we keep a hard copy on the wall in our kitchen. All entries have to be made by hand which makes sure we both know about everything that is going on. I get to schedule most of his appointments and try not to disrupt his daily activities too much. If I have something to do for myself, I try to put it in that afternoon window when he is napping. I also sneak some time every morning while he is showering and getting dressed to journal as it allows me to refresh and connect with my sanity.

Retirement is not what I expected, but then my husband never expected to have Parkinson’s Disease. I joined him in this journey almost 20 years ago and His PD diagnosis hasn’t changed my hope that we have many more wonderful years ahead.

I hate having an audience in the kitchen when I am cooking, yet my husband often joins me and it is a problem. I have never been one to stick to a recipe and often just throw things together to see how they taste. I love to experiment and, lately, have been adding extra veggies and other healthy things into many dishes as I am making them. I really don’t need a critical eye watching. Added to that, if my husband is in the kitchen with me so is our dog and it becomes an obstacle course of moving bodies. Our kitchen is just not that big.

So, why does he do it? I have been trying to figure this out for a while now and think that it must go back to the beginning when we shared cooking responsibilities. One night he would cook, the next night it was my turn. We shared a glass of wine as we joked that whoever cooked didn’t have to clean and vice-versa, this was together time.

Fast forward to today. I do all the cooking and most of the clean-up afterwards. He sets the table for us and feeds the dog while I am finishing dinner prep. I think that being in the kitchen with me may be a way for him to still feel that togetherness. I wonder if he misses the act of cooking and if helping out, in any way he still can, gives a little of that back?

I need to stop looking at this from my singular perspective and find a way that we can both be a part of cooking dinner without stressing. I need to find ways to be inclusive not exclusive in our daily lives to bring back some of those lost opportunities and make meal prep better for both of us.

It is hardest for me to be Positive when my husband is having a bad day, and it happens probably about once a week. He is feeling stiff and achy or maybe just really tired and doesn’t want to do as much. It’s really easy for me to join in the downward spiral and let things go, but that doesn’t really help either one of us. If instead, I suggest a nap for him and some quiet time for me, we can usually find a way to refresh and reset with a more Positive outlook so we can get on with our day.

Persistence, defined through Google as “continuance in a course of action in spite of difficulty or opposition”, speaks so clearly to what many of my days look like. I Persist as I take care of our house, cook our meals, provide for my husband. I Persist as I work alongside him against an invisible and insidious disease that daily takes a bit more of his capacity and could potentially take him away from me entirely. I Persist in finding gratitude in the little things we do still share together and knowing that we will keep on fighting no matter what Parkinson’s Disease throws at us.

The final “P” is Patience. This has been the biggest challenge for me as I have never been a patient person. If I need to do something, I want to do it now and that doesn’t work when you have a partner with PD. As his symptoms progress and my husband slows down, it has been a real struggle for me to step back and let the slowness happen. When it takes time for him to get something done, I catch myself wanting to step in and take over so we can get on with our day. I have to remind myself regularly that whenever I do something for him, I take away his opportunity to practice doing it for himself.

I know that if I Persist in being Patient and maintain my Positivity, I can be the best CarePartner for my husband as we travel this journey with PD together.

Our children know that my husband has Parkinson’s Disease, we had that difficult conversation a few years ago, but I am not sure that they understand what that means. Do they realize that he has tremors that keep him from doing even the simplest of tasks or that slowness and stiffness are his constant companions? They all know he is no longer driving, but do they see how that much that limits his interactions outside our home? Yes, we told them about the diagnosis, but they don’t see the progression or know the extent of the impacts. This is a man they have looked to for help and guidance, how can I help them understand his current situation without taking away the man they knew before, without taking away their respect for him and his dignity?

It isn’t easy being his ambassador, the voice that explains the challenges he faces every day to the rest of our family. They need to know that if I wasn’t here, someone would need to stop in daily to make sure his tremors are under control and that he able to safely shower and dress. They also need to accept that he doesn’t drive and that someone needs to come by regularly to make sure he has groceries and a ride to medical appointments. And, while it is important that his children understand the challenges Parkinson’s has brought to our lives, they also must see the strength that my husband shows every day as he faces and overcomes them.

I am going to find a time for a conversation with them when he is present. I need to make sure that they all know the truth in what I am saying and see that their father is there with me 100 percent. And, I need to encourage him to take the lead in the discussion when he can to make sure that we are all in agreement. Because, while I share this PD journey, it is his life and those of us who love him need to be prepared to step up should he need us. He is strong but may need us in the future, I hope I can find the right words to share the importance that we all be ready together.

I have lots of pictures in my house. Pictures of things we have done over the years, many shots of happy times in happy places. I keep pictures of our family on display. Our parents, kids, grandkids, even some of our pets. They include photos from large and small family get-togethers, crazy times, fun times, good times. When things get tough, I can look at those pictures and they bring a smile to my heart.

I also keep lots of knick-knacks, again mementos of things we have done together or things we have received as gifts from others. I have items from my family and my life before I met my husband as well as things he brought into our relationship; it is nice to have those ties to our histories as well as things we have gathered together.

The pictures of us from our wedding are probably the ones that mean the most to me because they help keep me grounded. These pictures remind me of why I get up every morning and continue in this journey. They calm and encourage me when things are difficult. I really believe that creating a warm, loving environment around helps us live a warm and comfortable life. It’s impossible to have a negative outlook when I am surrounded by evidence of so many shared positives in my life.

Sometimes I find myself feeling angry for no reason, just angry at the world. We’ve all heard the saying, “I got up on the wrong side of the bed”, somedays I think it might be that I got up on the wrong side of the world. I am grumpy and that is all there is to it.

Whenever that happens, I try to take a step outside of my current situation to look at what is happening and why. I do have the right to be upset about things we have to deal with thanks to my husband’s diagnosis, frustrated by some of the challenges it has brought to our lives. I do not have the right to take negative feelings out on him or other people around me. Feeling anger about his PD is going to happen, expressing that anger negatively is a self-defeating action because it only hurts me and the person I love the most, my husband.

I am learning to shirt circuit these moments by finding something to be thankful for that will allow me to react in a positive way. Stepping back, taking a deep breath, looking for the source of the emotion, all of these techniques allow me to regain control and realign my attitude. It is not his fault that he has Parkinson’s Disease and we are doing everything we can to minimize the symptoms. If I close my eyes and recapture the last positive thing we did, maybe a walk together or a shared touch, it helps me move past the current tension. I can let go of the anger and angst and instead hold tight to the good things that are happening regardless of his illness.  

We are in the process of getting our house ready for winter. I have “fed” the lawns, rolled up the hoses and covered the outside faucets. We are working on raking and mulching the leaves for our flower and garden beds. Thank goodness we don’t have to clean gutters anymore, they have screens. We hired a chimney sweep and now all that is left is to treat the roof for moss, I’ll be calling someone later this week to do that for us.

There are many things that I can do, some that I enjoy and others that I do simply because they need to get done. The point is that I do them and we move on. So, why is it that when I come up against something that I can’t do, I feel like I am failing?

My husband once told me “just because you can do something, doesn’t mean you should” and he was right. Case in point, we have a light on the front of our garage that needs a bulb changed out. I have tried to do this before and it was just too much. The bulb wouldn’t come out and the ladder felt unsteady. This is such a minor job, yet it needs to be done and I don’t really want to have to pay for an electrician.

Instead, I have decided to call my son and ask for his help. The light hasn’t been a problem during the summer months but we do need it working as the days get shorter. I need to accept that there will always be things I need help with and understand that asking doesn’t make me weaker, it makes me human. I don’t need to be super woman, just super CarePartner as we move ahead in our journey.

In our boxing classes it’s called “guard up”, the defensive position that keeps our gloves up ready to take on our opponent and protect ourselves from the punches. We can’t get hit unawares and knocked down. It turns out that this is great advice for our everyday lives too because there is always something coming at us and it isn’t always  because of his Parkinson’s.  

Last week it was repairs to our fireplace that became more extensive than we anticipated, this week it has been dental work for my husband culminating in a crown that popped off last night. I live at a heightened level of caution thanks to my husband’s PD diagnosis, always being mindful of the known challenges he faces. If something new comes along and I am not ready, it can really throw me out of kilter. It’s like I am juggling and have all the balls in the air, then someone tosses me another.

I am learning to stop and take a breath, knowing that I can face whatever challenge comes our way. Staying aware and ready to act will help me be prepared; opening my mind and heart will bring me through. Guard up!

We have been on this journey for over 10 years now and much has changed in our relationship. When it first began, my husband had a moderate tremor that was easily controlled by taking carbidopa-levodopa medication. He and I were both working, he was handling all of his self-care and driving without difficulties. There was still much he did around the house including yard work and preparing the occasional meals. Parkinson’s has slowly taken those activities away from him.

We knew that his symptoms would progress and decided to do whatever we could to slow that progression down. He did research on exercise programs and started participating in research studies to help him better understand what was happening in his body. His neurologist prescribed an experimental medication designed to slow progression but after a few months with no measurable success that was stopped. We continue to explore diet options and work to finetune what we eat and supplements that might be beneficial. Finally, we reached out to our community to find others with similar diagnoses and their partners to find out what they were doing.

What we have found is that all of these things are important but probably the most useful are the personal contacts we have made. We were introduced to wonderful exercise coaches and learned about nutrition and supplements that work, thanks to our Parkinson’s Support network. We hear what others are doing to fight this disease and it gives us different approaches to challenges we all face. We find solace in the fact that we are not alone in our journey and that there are resources available to help us slow this disease, we only need to ask.

We find that Rock Steady Boxing is the best exercise program for us and, thanks to virtual classes, we both are able to participate. The Parkinson’s Foundation website is a great place to start your search for advice on Diet and Nutrition.