There is an online resource called “Parkinson’s News Today” that hosts forums for People with Parkinson’s as well as for those of us who love them. They recently posed the question in their forum for Caregivers “what is your greatest challenge?” and were surprised when most responded that watching their Person with Parkinson’s decline as symptoms progress was the worst thing ever. I wasn’t surprised at all, I live it every day.

When my husband was first diagnosed with Parkinson’s Disease, I was heartbroken. I had seen my father go through this and wasn’t ready to face it again. As my husband’s symptoms progressed, I saw that our journey was going to be different. Things moved more slowly but the tremors and stiffness eventually took away his ability to work, his ability to drive, even challenged his ability to dress and feed himself. Life became hard for both of us. His philosophy has always been to look at what he can do, not what he can’t. Unfortunately, I am not as good at seeing the glass half full, I see the challenges and grieve for our loss.

We have been given somewhat of a reprieve thanks to Deep Brain Stimulation. It took 10 years for him to decide to give it a try and it has been life changing. Once again, I see things that I had been missing, most notably his smiles. Yes, we are still facing challenges, but they are more manageable and I am starting to feel a little more optimistic as we are able to resume some of our activities. Yet I do wonder what life could have been like as I continue to work through the heartache of PD.

The holidays are coming, always a busier time of year at our house. In past seasons, I was often the one who hosted the family. This meant several days of housecleaning and decorating, shopping, cooking, generally prepping for the day and then a week to recuperate before doing it all again. Thankfully my sister would usually host one or the other of the bigger meals as we traded off those duties, but I still felt a certain responsibility to do more to make sure our kids and grandkids needs were taken care of. My husband pitched in where he could, but as his PD symptoms intensified, his help diminished.

Fast forward to this year. We have a daughter who doesn’t believe in celebrating Christmas, a son raising his family vegan, and the holidays have become very complicated. Last year, thanks to the pandemic, we had to celebrate differently and it gave me time to look at what really mattered. We didn’t all come together for a meal and yet we still found ways to connect. Maybe those traditions are just that, traditions that don’t necessarily meet our needs anymore?

So, for this holiday season I am going to look at starting new traditions that begin with meeting my own needs first. I will stop and take breaks when I am tired and not squish too many things into too little time. It may sound selfish, but by taking better care of me, I am more able to provide for those around me. Second in line will be my husband and then I will see how we can fit the kids into the mix. I am sure that with a little thought we can find opportunities to celebrate that allow everyone, especially me, to enjoy less stressful holidays and wouldn’t that be the best gift ever?

We actually got to try this out earlier this week. I wasn’t thinking when I went in for two shots, a Covid booster and a shingles vaccine, on the same day. I am not sure which one, or maybe a combination of both, hit me but I was sick for 3 days. Not go to bed sick, but definitely unable to do much of anything sick as I struggled to care for myself, let alone my husband.

He was so sweet as he stepped up and tried to help me. The first thing he did when he realized I was under the weather, was to insist that I not try to do anything. Then he stopped asking for help and started just doing things. He managed our day to eliminate some of the challenges and it worked. I was also able to pull some leftovers out of our freezer, making meal prep easier and quicker as I worked to recover. (You can never be overly prepared for emergencies. I always keep a few days’ worth of leftovers in my freezer.)

Trading roles was a brief reminder of what life must feel like for him everyday. I wanted to be up doing my usual routines, I didn’t want to feel helpless and dependent, but there it was. Having no choice in the matter, it was good to know that there was someone close by to help me figure things out and reminded me of the importance of being kind and loving when providing care. After all, that’s what I will want in a good CarePartner when it is my turn.

I was trying to help my husband, encouraging him to stretch a bit further, when he turned to me and said “You don’t understand, you’re not the one with Parkinson’s”. In that moment, my comprehension shifted. He was right, I couldn’t really understand. I am not the one who wakes every morning wondering how my body is going to respond today. I can’t know how difficult it is when my body refuses to do something that worked yesterday or when my brain stops talking to my feet as I struggle to move. I can’t possibly understand how the same stretches that felt good yesterday are just too much today and I really don’t need someone to point it out to me.

What he does need is someone who is here for him. Someone who can listen and be compassionate. Someone who really hears what he says and feels about his challenges and doesn’t immediately shift to trying to find a fix. Because no matter how much I try, I am not a miracle worker and I can’t fix this.

Instead, I need to be a loving presence. I need to listen, observe, and yes, encourage at times, but always remember that he is doing everything he can just to survive. Most importantly, I need to hold him tight and love him through whatever type of day he is having. Being a CarePartner means being a Caring Partner on his journey. It is one that I can share but never completely comprehend.

This is one of the most difficult things Parkinson’s CarePartner’s have to face. Whether your Person with Parkinson’s faces cognitive or physical challenges, they are going to have to stop driving at some point in their journey. How do we tell our loved ones that thanks to Parkinson’s they shouldn’t, or even can’t, drive a car anymore? How do we enforce that decision? What does it mean for us and our independence?

The decision not to drive wasn’t a difficult one for my husband thanks to another situation that arose. He had shoulder replacement surgery and wasn’t physically able to steer a car for several months. He hadn’t been driving much before that and we were having conversations about how his tremors and his slowness were impacting his abilities. Grounding the conversation in safety and placing the blame strictly on the progression of his disease helped him accept this new reality. That, and the fact that I was there ready to take him wherever he might want to go. We became a driving team and it works for us.

I was watching a program the other evening where an elderly gentleman ran his car into a crowd of people. His wife, who was in the car with him, admitted that their daughter had taken away his keys but that she had given them back because she felt it was cruel to take away his independence. I know it was a television program, but I would encourage you to take the message to heart. Is it crueler to help your Person with PD know that driving is a responsibility and that they are no longer safe, or to let them drive until something awful happens?  

Walking is good, cycling is better, jogging and groups sports even better if they can manage it, but the key is that they need to be moving. The more active they are, the more active they will be able to be as their disease progresses. Researchers agree that exercise equals medicine for People with Parkinson’s Disease but, more importantly, strenuous exercise provides better results. Not to mention the social aspects of working out with other people.

My husband has been working out since shortly after his diagnosis. He used to drive himself to a local gym twice a week and then learned about Rock Steady Boxing. He has been boxing for about 5 years and is now participating in an on-line class that includes RSB four days a week. In addition, he does a stretching/range of motion class on the weekends and a voice/movement class mid-week. He has a very busy exercise schedule that covers aerobic or high intensity and cognitive challenges. I feel he has a good mix and yet still encourage him to walk around the block with me at least twice a week.

One thing that helps motivate him is that we work out together. I need to be available when he is exercising in case something happens and the workouts are good for me too. It is a positive activity for us as we tend to challenge each other. I can modify the moves he is doing to ensure I get the most from the time, but he seems to enjoy having me there and it is good for me to see what he is doing. The sit-to-stands, POW’R moves and RSB are helping me be more fit and making me a better CarePartner. After all, why should he get to have all the fun?

For more information on the most effective exercise plans see How to exercise in order to get results from Parkinson’s Exercise Programs (davisphinneyfoundation.org)

We adopted a cat a few days ago. She is fully grown and box trained, I wouldn’t have had the energy or time to train a kitten. She joins our little dog who is getting older and not as active, hopefully she will perk him up. I know having her will change the dynamics in our home, I hope it is an improvement.

Getting her was a selfish decision. I always liked cats and have had one for most of my life. We lost our last just over a year ago and were thinking that we wouldn’t get another, but I have missed her more than I expected. She was always willing to listen to my complaints and liked to snuggle up to me in bed. Granted, having a cat is a bit of work, one more thing to care for and worry about. It is also one more thing to love and that will love me back, something I am very much looking forward to.

Being a pet parent is beneficial for my husband too. Having other beings in the house gives both of us additional stimulation and something to think about besides PD. The dog is more demanding of our attention than the cat, but petting a cat is one of the greatest stress relievers I have ever found. Whereas our dog encourages us to get up and move, a cat reminds us of the importance of napping helping us maintain a healthy balance.

The Michael J Fox Foundation covered this issue in 2014. Check out their article at How Pets Help People with Parkinson’s Disease .

I find it easy to get caught up in my mistakes, dwelling on the things I do wrong in caring for my husband. If I let them, those thoughts can lead me into a spiral of negativity where I begin to question everything I do. I become my own worst critic without the expertise to back it up. Ten years into this role of CarePartner and I am still learning that it is okay to screw up because otherwise how will I learn to do better?

There are many more times when I do the right things, yet they pass me by unnoticed. Helping my husband with his socks, working out with him, preparing healthy meals, keeping the house clutter free to make it safer for both of us, sharing my smiles and hugs. These daily actions create a backdrop that helps me maintain a positive attitude, yet I never take the time to acknowledge their importance.  

Instead of focusing on my blunders, I need to look for the lesson and then move on. If I weigh the negative event against the many positive things I do everyday, I can realign my internal dialogue. I remember the good, put a smile on my face, and I’m ready to take on whatever new challenge CarePartnering decides to send my way.

We had a small group of family over recently for a chili feed and pumpkin painting party. It was a great get-together and everything seemed to be going well. That is, until we got to the chili feed. I opted to hand out bowls of chili and let everyone find a place to sit including my husband. I wasn’t thinking about his Parkinson’s Disease that still causes a slight tremor and makes him unsteady on his feet. There was a spill, which he did his best to clean up, and he went on with his meal. Others saw what happened, I didn’t know until later. My husband left the room shortly after eating and I found him sitting alone in another part of the house.

If I had only taken a moment to think things through and carried the bowl to him, the spill could have been avoided entirely. I was distracted by the other people and activities and forgot my primary responsibility is to care for my husband. I am troubled that I didn’t see him cleaning it up and realize that it could have been much worse had the chili been hotter. Not only did my inattention create an uncomfortable situation for my husband, it was also potentially dangerous.

Maintaining family relationships is important and hosting events can be fun for both of us. I know that my actions were neglectful, yet I also know that I am human and need to forgive myself for mistakes as long as I learn from them. We will continue to have people over, but I must always remember that the most important person at any gathering is the man with whom I share my life. I won’t let the busyness of any event interfere with my role as loving CarePartner.

This information comes from a WebMD newsletter and refers to healthy people, but what about people with Parkinson’s Disease? The slowness mentioned is at the heart of my husband’s diagnosis, is it any wonder his enjoyment of the occasional drink has changed? We sometimes visit local wineries to share a glass with friends and listen to live music. A few years ago, we could easily split a bottle over an evening. As his disease has progressed, he finds that even a small amount of alcohol goes straight to his head and magnifies challenges he is already facing thanks to PD.

Continuing with the article from WebMD, I read that alcohol can impact his balance which is already an issue, slow down his digestive system exacerbating his constipation, and short circuit his body’s thermostat making him either too warm or too cool, again already a problem. That one little glass of wine that helps me relax intensifies my husband’s symptoms and may even lead to longer term challenges.

We are exploring other options. I still enjoy my glass of wine, but he chooses to have either a very small glass or an alternative beverage. And, he never goes past that one sip, it just isn’t worth it for him. We are learning to toast the day with water, a healthier choice for both of us anyway!

Find the rest of this article at How Alcohol Affects the Body/www.webmd.com; for more on how alcohol consumption and PD visit Parkinson’s Disease and Alcohol, Your Guide on the “my Parkinson’s team” website.