I was participating in a Parkinson’s Foundation Mindfulness Monday webinar recently and the psychologist who was presenting shared a truth I hadn’t considered. She talked about the emotions surrounding a Parkinson’s journey, whether we are the one with it or the one caring for them, and how they seem contradictory at times. One example she gave that really struck a nerve with me was that I can feel gratitude alongside grief. As a matter of fact, she indicated that it would be unusual not to feel both at times. It’s okay for me to be grateful for what we still have while at the same time grieving what PD has taken from us.

She shared a couple of other examples as well, being hopeful even though we are scared, being resilient but tired. As I thought about her words, it struck me just how true they were and that I often try to stuff the negative side rather than acknowledge it. I even feel guilty at times for letting those doubts come in, but I shouldn’t. Her final activity was to have us repeat “I am doing my best at all times and I am enough.” It’s amazing how therapeutic those words can be.

Sometimes it helps to recognize what I am feeling and let it happen. I was at the scared stage the other day and was able to share some of my concerns with my husband. There were even tears for a while. He listened, we talked, and I walked away in a more hopeful state. It was good for both of us. I think I’ll try to fit Mindfulness Mondays into my schedule more often as they do seem to help.

These 30 minute sessions are found on the web at https://www.parkinson.org/resources-support/online-education/pdhealth#mm. The one I mentioned in this article was from June 8^th, 2026.

Sounds harsh, doesn’t it? Yet, I think I needed someone to say this to me 20 years ago. Life as a PD CarePartner could have been so much easier if I had been given an idea of what was coming. Each new task, each new setback for him, meant a new reality to be accepted for me. I knew things would change and that I would be asked to do more for him and around the house, I didn’t really fully understand what those changes might mean to my life.  

When he wasn’t safe around hand tools, I took over minor maintenance tasks. When Parkinson symptoms made it unsafe for him to drive, I became the chauffeur. When he couldn’t safely use kitchen utensils, I took over all the cooking. When we figured out showering wasn’t safe, I began helping him with it, not to mention all the other selfcare bits that go with it. When scheduling appointments and talking on the phone was a challenge, I became his private secretary. All of this happened over a number of years and I integrated each activity into my schedule as they came.

My life is nothing like I expected when we married 25 years ago. Retirement has become a new job for me as I am caretaker of our house and caregiver for my husband. I have to work to carve out a few hours of time for those things that I enjoy doing and they can only happen if he is safe and cared for first. Still, I am here and stay because I love this man and will stand by him as long as he needs me. But it has taken a deep and loving commitment to share in this journey. If I had it to do over, I wouldn’t change any of my decisions, it just might have been nice to know what was coming way back then. 

I came across a saying I had never heard before and it resonated with me. The speaker referred to this as the 3 H’s question, do you want to be hugged, heard, or helped? I did some work on-line to see if I could find the origin of this concept and it appears to come from therapy for relationships and communication. I wasn’t able to take it any deeper than that, but it is such a great thought I wanted to share it here.

Defining what I need in a particular moment is not always easy. Sometimes it is practical, I need someone taller to help me reach a top shelf. Other times it is not so clear and I need to talk it out. Then there are times when I’m feeling overwhelmed and just need someone to take anything off my plate and do it for me. One suggestion I come across often is to create a list of practical needs so when someone offers help I have answers for them. I started a list once but found it difficult to keep up with as things change on a daily basis.

Getting back to the 3 H’s, I really like this simple concept. In the moment of need, I can stop and ask myself if I need to be hugged, heard or helped. Once I figure that out, I can tell others whether I need them to listen for a while, help me with a task or just give me a big hug. Or, more probably, I need all three. I am a Parkinson’s CarePartner after all.

As my husband’s physical abilities are taken away from him, he seems to be living a more cerebral existence, caught up in his head. And even there, his brain is malfunctioning. Everything in his body has slowed down including the neural processors in the brain that function to keep it all going. Could it be that the mental effort needed to create physical activity is becoming too much? Is that why movement has become so difficult for him at times?

We were told early on that Parkinson’s interferes with neural connections. Activities that used to be automatic would break down and not work anymore. He would have to figure out how to function by focusing and telling his body what to do. In a non-PD brain, neuroplasticity regrows networks allowing for new connections to replace broken ones. My husband’s brain doesn’t have that option. New connections and pathways can still be built, but they are not necessarily correct. Again PD and the medications he takes interfere to mess things up. It’s a very complicated situation and one researchers are working on.

One activity that does seem to have a positive impact on neuroplasticity or regrowth in the PD brain is physical exercise. The medical field hasn’t been able to figure out why exactly but it does make a difference. When my husband was told exercise is the only treatment proven to slow progression of symptoms, he listened and has been working out regularly ever since. Perhaps, that is why we are still on this journey after almost 20 years in spite of all that he has lost.

We attended a presentation by a dietician recently telling us all about what someone needs to eat to slow down the progression of Parkinson’s Disease. Her information came from years of study working with others who have this diagnosis. A lot of what she said were things I had heard before but it was good to review them and have them all put together in one discussion. And she had great handouts of what to eat and what not to eat which made her words easier to understand. The only one question I wish I had asked her is what about me?

Because, like many CarePartners, I cook for both of us and am not sure I am ready to make all these changes in my diet. I get the concept of cooking for my husband to help him stay healthier but will these changes be good for me too? Do I have to give up some of my favorite foods simply because a study said they might be detrimental to someone with PD? I certainly can’t eat them in front of him, that would be too cruel, so how do I make this all work for both of us?

What I am saying is that while I am sharing my husband’s journey with Parkinson’s Disease, I also have a life to live. All of my decisions can’t simply be based on what is best for him without considering the impacts on me. It may sound selfish but maybe that’s okay. She did say that her recommendations can be adapted to accommodate personal preferences and needs. Perhaps those personal preferences sometimes just need to be mine? 

What more do I need to say? There is so much that always needs to be done and only so much time, it often seems I can’t possibly complete my to-do list and care for my husband. The house, the yard, the husband, which comes first? I know it’s obvious that he has to be my top priority yet there are times when I just have to tell him to sit down and not need anything for a while because I have a task I must address elsewhere. It usually works.

I have started taking a moment every night after I go to bed to think about what I accomplished that day. It helps me to understand that even though it may not seem like I’m getting anything done, a lot actually is happening. I include the basics, the meals I cook, the support I give my husband, the things I do around the house. Then I try to think about what I did for myself. It could be the walk I took around the block or the 10 minutes I got to sit outside and enjoy the sunshine. Listing what I was able to do each day helps me let go of what I wasn’t able to get to and sometimes helps me sleep better.

I have accepted that I will never finish all my tasks on any given day, that is an impossible goal. Instead I am working on acknowledging what I did accomplish and understanding that it will have to be enough. I am always doing the best I can in a difficult situation and the rest can wait. It’s job security after all.

We just returned from a short trip to the beach. Being there was very restful, getting there was not. Traffic wasn’t too bad, thanks to mindful planning, but it was rainy and windy. By the time we arrived, we both were stiff and tired from riding in the car. Thank goodness it is only about a 2 ½ hour drive for us, we might not have made it otherwise.

Once upon a time it was nothing for us to go on long road trips, sometimes over a few days. That was when we could take turns driving. Now that I am the only driver, I need to stop for breaks after a couple of hours. It’s good for my husband to get out of the car and stretch his legs too. We actually try to keep all our trips to no more than 2 to 3 hours at a time with a full day to recuperate before the return home. And then once we are back at home, we always allow at least a day with no appointments so we can get back to our normal routines.

In addition to the driving, I have to remember that my role of CarePartner goes with us wherever we go. I can’t let the trip itself be so draining that I don’t have any energy left to provide needed care. We can take our little get aways, unfortunately Parkinson’s is always going to be there with us too.

We’re going to the beach this weekend. We’ll only be gone a couple of days but it still takes a lot of pre-planning and we’ll pack as if we were staying forever because there are so many things we need to take along to make everything work. It’s difficult getting ready to go and can be challenging setting things up in the new location. We’ll both come back needing a day to recuperate but I know we’ll have fun while we’re there.

It’s a lot of work for me as I have to find a resort that has a restaurant that serves three meals every day. If they can do room service, it’s a bonus. We need a room with a view, a deck is even better, because my husband likes to stay and read while I go out for walks. I can’t reserve on-line because I need to speak with them about their accommodations and make sure they can meet our needs. It’s good to know whether there are grab bars and a shower stool, how far the room is from the restaurant and the parking situation just to name a few of the things we discuss.

This time we are returning to a resort we have visited before. We’re not staying in the same room so I had to go through my checklist with the receptionist when we booked. She assured me that we’re in a suite with more room to move around, I hope she is right. I also hope the grab bars in the bathroom aren’t positioned between the toilet and the shower like in the room we had before. That was a bit challenging. At any rate, someone else will be cooking for us, cleaning for us, and the ocean will be right outside our window. It’s going to be well worth any effort I have to put forth to get us there.

We have certain things we do that make our relationship special. Our morning cuddle, our candlelight dinners, our afternoon aperitifs. Many of these have become traditions over the years and most have been adapted as our situation changes. But we still do them in some capacity and it keeps us grounded to who we were prior to my husband’s diagnosis.

Keeping the spark alive in a relationship is difficult in the face of progressing Parkinson’s. I see less of the man I married every day and my role of caregiver increases to overtake my role of loving partner. It’s not fair. I know he’s still in there, I see it in his eyes and in his smiles. But, I would be lying if I didn’t say that some of the challenges of helping with personal tasks can get in the way of having amorous thoughts.

Still we are very much in love and having these traditions give me a chance to set all the rest aside. Seeing him over a candlelight dinner or cuddling with him every morning brings back such good memories. In those moments, Parkinson’s doesn’t exist and that’s what keeps the passion in our relationship alive.