Just when I think I’ve figured things out, something new happens. Parkinson’s is a never ending journey of learning and acceptance for me as a CarePartner. We met yesterday with the care manager from the agency who provides our in-home care to update my husband’s care plan. We started with these folks three years ago yet so much has changed. I don’t always see it, the changes come on and get assimilated into our daily lives. I accept the new challenges as they come and figure out how to move forward.

The woman from the agency was surprised to see transfer poles in our home. We discussed his activities of daily living and many thing needed to be updated. She didn’t know that my husband was using his walker full time now, according to her paperwork he was using a cane. There have been changes due to balance issues. When we originally met his needs were definitely less intense, I hadn’t realized how things have progressed.

This journey is unique and unpredictable. I never know from one day to the next whether we are going to have a good day or a bad day. I wake each morning and prepare myself for whatever may come, it’s all that I can do. If my husband can face whatever challenges PD brings to him today, then surely I can accept whatever that means for my role and stand alongside to support him.

I was helping my husband with his shower this morning when I realized that I couldn’t reach his shoulders. I started to ask him to stand up straight, which never works, but instead said “Can you raise your head towards the ceiling.” The specific instruction was easier for him to translate into action and I was able to finish washing his back. I used this idea later in the day when I was attempting to help him off the couch. The saying we were taught was “nose over toes and up he goes” but it wasn’t working anymore. I decided to be more specific and asked him to bend forward until he could see his toes. This move brought his upper body weight forward and made helping him up much easier. Our new saying is simply “look for your toes”.

This disease is a trickster convincing my husband that he is standing tall when he actually isn’t, convincing him that he’s speaking loudly when he is whispering. It has his perceptions all out of whack.  My pointing these things out doesn’t help, but asking for exactly what is needed in the moment can get us to a positive result. Specific, clear, even step by step direction at times gives him tools he needs to be able to move and act appropriately.

Good communication is a vital component of our relationship and it is also a vital component of helping my husband safely and successfully achieve his activities of daily living. As Parkinson’s makes him process his thoughts differently, I must think about communicating what needs to happen differently. Speaking directly, clearly and keeping these challenges in mind, I find I am learning new phrases that are respectful and reflect dignity for his situation.

My husband is having a lot of knee trouble. He even woke me last night and asked for an ice pack in bed because it was hurting so much. Of course it’s his stronger leg, the one least affected by his PD. Unfortunately, the pain gets in the way of his walking and both his legs are getting weaker as he isn’t using those muscles. It’s also changing his ability to get up and down and he is no longer able to do even one sit to stand. It’s a real concern for his long-term abilities.

He’s worked with his PCP and an orthopedic specialist and no one seems to have an answer that will bring him relief. They’ve tried shots in his back and his knee. He would have temporary relief that probably was because of the lidocaine injection they give prior to the cortisone. He has worked with Physical Therapists for years, again with little or no positive outcomes. My husband is looking for a way to move without pain that doesn’t involve surgery. We are convinced he has some kind of soft tissue damage but no one wants to hear that because they don’t know how to fix it. I am at the place where I am ready to ask his medical team about a referral to a chronic pain specialist. We have to get a handle on this before he loses the use of his legs totally.

There are those in the medical field who remind us kindly that he does have Parkinson’s Disease and that chronic pain often comes alongside that diagnosis, especially in the later stages. That answer doesn’t work because it sounds too much like giving in to the disease, something my husband has never done. We see his new PCP next week and go back to the orthopedic specialist the week after. I am crossing my fingers that one of them might have a clue. Because this time it isn’t just Parkinson’s.

I came across a reading recently that talked about the difference between being responsible to someone and being responsible for someone. It was a concept I had never really taken time to consider. Is there a difference between the two and, if so, how does that play into my role of caring for my husband? Does the belief that I am responsible for my husband take away from his independence whereas can being responsible to him give it back?

I am reminded of a conversation I had with a fellow CarePartner about the challenges we face. I said that I feel I am called upon to do things I didn’t sign up for as a wife. She pointed to her ring and said “in sickness and health”. For her the conversation was over. I think this is similar to the question of being responsible to or responsible for. If I am responsible for my husband, I am doing everything for him and basically taking control of his life. I am treating him like a child. If I am responsible to my husband, I am working alongside him to make sure everything is taken care of while still recognizing my own limitations and needs. I am treating him like the adult he is.

It is valuable for me to step back sometimes and consider what I am doing to manage our lives and what I could let go of. There are times when it is best for me to take control but there are also times when I do it simply because it is easier. Being responsible to another human being may not always be the easiest path, but it is best for both of us.  

While I am sitting here writing these words, my husband is in the other room participating in a virtual Speakout session. He is learning about his autonomic versus intentional physical systems while practicing the use of his vocal cords. He has been doing this for a few years now and it helps with his swallowing, his speech and so much more. In the beginning of this treatment, I was helping him with the lessons that he needed to do daily but now he logs on and does them without me. I make sure he has the time in our schedule to do this daily and may walk through the room with a comment, otherwise it is all up to him.

My husband has another exercise that he does three times a week to support his breathing and lungs that we jokingly call his “huff-n-puffs”. He uses a tool suggested by his Speech and Language Pathologist and this is also something he can do without any assistance. It involves about 10 minutes of puffing into a small device. He has this scheduled on his phone as if it were a medication so he doesn’t miss a session and I try not to schedule other things that would interfere with that time slot.

I am thankful that he is still able to manage some of these things on his own. There are some things that we do together still, exercises that we both need including his boxing class. Even then, I may sit out a day, but I support him by keeping that time clear on our calendar so he always has the opportunity to participate.

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.