Author: cptricia

When you begin this journey your loved one will be the primary contact with the medical team but know that at some point you may need to step up and take on that role.

We’re sitting in the doctor’s office and she asks my husband a question at which point he turns to me for the answer. It’s not that he doesn’t have an answer for her, it’s just that sometimes it becomes difficult for him to get the words out. Especially after he had Deep Brain Stimulation surgery, speaking clearly has become a more difficult challenge. I answer for him and then turn to him to make sure I am saying what he was thinking. It’s an interesting dynamic as I find myself placed in the role of interpreting for him to the world.

I’ve always attended his appointments simply because I felt it was best for me to stay informed and I wanted to make sure his doctors were getting the full picture. It is natural for anyone to try to show our best when we are at the doctor’s office but when she is trying to understand his Parkinson’s, she needs to see his worst. She needs to know the range of symptoms he is facing and my husband may not always remember to share that information. I am there to bring a second opinion into the conversation.

Unfortunately we may reach the point where I am the primary communicator and feel it is important to build groundwork for that now. I like the fact that attending all of his appointments has allowed me to develop a good relationship with his doctors. They respect and understand my role as his Caring Partner. I also like the fact that my husband trusts me and understands any discussions or decisions I participate in while working with his medical professionals will always be rooted in his best interest. I don’t want to be in charge of his health care, but it may come to that one day. It’s important to make sure we’re all ready for that possibility.

Chronic, progressive, debilitating, terminal. Don’t let those words take over your mindset or you will never make it through another day as a Parkinson’s CarePartner.

I’ve heard them all. I particularly loved the statement that my husband wouldn’t die from Parkinson’s but would die with it. I live with this knowledge and don’t need reminders of it. Instead I want to focus on the flip side, strength, resilience, courage, the positive aspects of fighting this illness together. I want to look at what we can still do, not what has been taken away.

There are those days, however, when the darkness creeps in. I see it in the progression of my husband’s symptoms and when I catch myself doing more to assist him without even thinking about it. Changes in our lives sneak in and suddenly we’re further along in this journey than I realized. And it scares me. What am I going to do when the inevitable happens? What will life look like after? We have an estate plan that covers practical issues, but how can I plan for dealing with the loss?

In those flashes of fear, I am reminded of the importance of each interaction. We are both still here and fighting. We need to find the best way to make it through each day that we are given. Living life as a Parkinson’s CarePartner can be positive if it reminds me that every experience we get to share is precious. I shouldn’t waste any of them worrying about what might come someday. Live life for today and make it worthwhile, that’s what truly matters in this moment.

The help you want from caregivers as a CarePartner and the help your loved one is willing to accept may be different. Be open to their concerns and negotiate mindfully.

If I could ask for help with my husband based on when I need it most, it would be those first couple of hours every day. I would have someone come in to make his breakfast, help him shower and get dressed. They would help with his shoes and socks and be available if he needed additional support getting ready for his day. And while they were working with my husband, I would be having breakfast, reading the newspaper, writing in my journal, catching up with emails, taking a shower and getting myself ready for the day.

Unfortunately, that doesn’t work for us. My husband doesn’t want anyone else helping him with his more personal tasks and I can understand that. There are things that the state won’t allow his caregivers to do, like shaving him with a razor or clipping his nails, so I get to do all of those. The closest I get to taking a break with the morning schedule is on days when we do have a caregiver coming and he agrees to switch his shower for an upper body sponge bath when they arrive. It’s a compromise that we worked out so I get a bit of a break and he gets to maintain some of his privacy.

We both need to understand and agree on the role caregivers can and should be playing in our home. It is not easy for either of us to have a stranger coming in to care for him. It’s important that we are able to communicate about these things and that we are able to negotiate when we have a difference. I try to respect his need for independence and ask that he respect my personal limitations. There are always going to be times when I need more or he wants less, we just need to be open to working together and making this difficult component of our journey better for everyone.

It’s necessary to have a support group for connection, advice and understanding, but remember that what works for someone else may not work in your journey with Parkinson’s.

I love the input I get from my support network. They always have stories about medications or adaptive tools that have worked for their loved ones. I can look to them for ideas on different challenges we face and know that they will share good information. It was from this group that I learned about Rock Steady Boxing, bidets, and transfer poles, all interventions that help make our daily activities easier. I even have members reach out to me with questions from time to time and I am flattered that they think of me as a resource. I always remind them that I can only speak from our experiences and that they really should consider anything I say as a suggestion not a solution.

Our journey with PD has been full of trial and error, or maybe more accurately hit and miss. We can’t really know if a pill or adaptive device is going to be helpful until my husband actually gives it a try. It doesn’t seem fair since we are all dealing with the same illness. When someone finds a medication that helps them or provides a healthy bowel routine, it should be transferable to everyone with the diagnosis. We should be able to share our knowledge and everyone within our network would benefit. Unfortunately, the pool has to be much larger than our local group of about 30 folks with the disease for any real similarities to show.

Just as everyone with Parkinson’s looks different, the way they respond to medications and the tools they find useful are going to be different. That’s why it is helpful for me to also maintain a relationship with his medical team. If my husband’s neurologist, physical therapist or PCP has tried this intervention with other patients, they may have a better handle on whether it might be useful for us. Combining the experiences of fellow CarePartners, who know about the daily life challenges of PD, with the knowledge of professionals who have studied this disease hopefully gives us the best chance of finding good interventions. Always remembering that it’s going to be 50-50 whether it will work for my husband.

Look at your life as a CarePartner from a situational perspective and it may bring things into better focus.

I was writing in my journal this morning and caught myself saying that considering our situation, life is pretty good. And it truly is. Yes, it’s different from what I thought retirement would look like but that doesn’t mean that it’s all bad. There are still times during my day when I find ways to have fun whether it is with my husband or our cat. There are still puzzles to work out (I often refer to them as challenges?) and adventures to be had. We have food on our table, a roof over our heads, a comfortable place to sleep at night, and a loving partner to share it with. Isn’t that what truly matters?

We still have a social life with friends and family. We may spend a lot of time at home but have things to keep us busy. We can sit in our backyard or take brief walks in our neighborhood. We both like to read and enjoy discussing the books we’re currently working on. I can work in my yard and garden and my husband can supervise and tell me what I should be doing. When things get too difficult, I have people who are always there for me.

Staying positive for me means looking at our lives through a broader lens and remembering that PD is only a situation in which we find ourselves. Other couples at our ages are facing much more difficult challenges than we have. My husband’s Parkinson’s Disease symptoms can be somewhat controlled and we have built a life around that reality. It’s not ideal, but it is what we have to work with. By using an understanding and gentler outlook, I can make the best of it.

Don’t beat yourself up if your best laid plans for an activity go awry.

We went out to dinner at a new brewpub last night. I had been there once before, but my husband hadn’t experienced it yet. I was looking forward to sharing something new and thought it would go well. Unfortunately, his PD reality and my expectations didn’t quite come together and it was much more challenging than I was prepared for. The dining area was busy and we wound up seated at the bar on high stools that were difficult to navigate. We ordered paninis which were tasty but very messy and we both needed forks to eat them. All in all, it was much more stressful than it needed to be. I found myself apologizing to my husband on the way out the door and know that we won’t be trying this place again.

I am not always going to be able to fully understand his challenges in any setting. I did what I thought was due diligence by visiting the brewpub ahead of time. When I went there with a friend I noted that the location was good, the seating was comfortable and appeared to be accommodating. It might have been okay if we had gone in the afternoon rather than at dinner time, I’m not sure. It also might work for someone else, just not for my husband. I can still go there with friends if I want and when I go out with my husband we will make a different choice.

It’s important for me to remember that I am not able to predict what will happen in every situation we encounter. I won’t always know whether a particular setting will be a challenge or not, I can only check it out and then hope for the best. It’s not my fault if it doesn’t work out the way I expected, it just may not be a good fit for us. Blaming myself for making a bad choice doesn’t make things any better.

Analyzing data submitted by current PD patients is giving researchers a clearer picture of the disease and may provide beneficial information for your journey.

I came across a report in Neuroscience News last week that talked about how the non-motor  symptoms of Parkinson’s appear to present differently based on which side of the body is impacted first. The study indicated that people whose motor symptoms started on the left side, like my husband, are more prone to depression and anxiety whereas patients who felt PD first on the right side reported more issues with cognitive decline and potential for dementia. Their work didn’t clarify how to know which of those patients would actually develop any cognitive challenges, it simply looked at historical data and found these relationships. Perhaps that will become clearer as they dig deeper.

There is a saying that when you’ve seen one person with Parkinson’s, you’ve seen one person with Parkinson’s. This report, coming out of the University of Geneva, looked at data collected in 80 studies and over 50 years and found that assertion may not be completely true. There are likenesses among PD patients, even though they may not always be obvious, and those similarities are going to help drive better treatments in the future.

I have always felt that Parkinson’s is a journey without a road map but, just maybe, these new reports will help us get there. The hope is that this information may be useful in creating more personalized treatment plans at an earlier point in the diagnosis. Even though my husband is at more advanced stages with his disease, this information shines a little light on where we have been and may be going and that may let us all know what to watch out for as we continue on our journey.  

This article was found in the Neuroscience News Newsletter dated July 7th, 2025. Click on the link but you may have to scroll down to find it.  

Being a CarePartner will be an educational journey as you learn more about the disease inflicting your loved one, develop new personal skills, and discover just how strong you truly are.

I am so tired of learning new things about Parkinson’s Disease, especially since the one thing I want to know, how to make it go away, isn’t available to me. I don’t want to learn more about fixing things around the house or taking care of my yard. I really feel like I’ve been pushed to my limits, I don’t want to have to be any stronger or more capable. I just want it all to stop and to have my husband back. That’s my whining done for the day, time to flip my perspective.

It’s time for me to figure out how to appreciate my new capabilities. There is some pride in fixing little things around the house myself and figuring ways to get bigger things done too. I find pleasure in the blueberries I am growing in our backyard. I may not enjoy all of my new skills, but they keep us going on a daily basis and there is personal satisfaction in that. Watching the man I married standing strong in spite of his diagnosis, reminds me that I must continue to be strong and capable for him.

I miss the life we had and the future we could have had. I regret conversations never shared, trips planned but never taken, all the opportunities Parkinson’s took away from us. Focusing on the losses gets me nowhere, I need to look for the gains. I feel that I have a solid knowledge base about this disease and about being a caregiver. I have become pretty competent at taking care of minor disasters around our home and property. I am more patient and compassionate than I ever thought I could be before he was diagnosed. Finally, I can be strong enough to continue this journey with him wherever it goes.

Your loved one may not be able, or willing, to recognize their declining capabilities. It is important to check in from time to time to make sure things are getting done.

I had an interesting conversation the other day with a fellow CarePartner who mentioned that her husband is responsible for some of their financial tasks. She wasn’t sure that he was keeping up with it. I get this so well. When my husband retired he took over of most of our banking activities. Our checkbook is set up in an account on his computer and, other than monthly balancing which we always do together, I left it all to him. Being somewhat of a computer geek, he set up most bills for automatic payments which really made the process easier.

The first indication that things might be difficult for him was when we started seeing incorrect entries during the monthly balancing. No payments were missed, but they weren’t always recorded or recorded accurately. I wondered if it was because he couldn’t see the entries so I increased the size of the font in the program. I couldn’t increase the size of the keys on his keyboard, nor do anything to help his dexterity which was being impacted by his disease. When his laptop started giving him other problems, he decided to hand management of the checkbook over to me. We switched roles and now I take care of the daily entries while he helps with monthly balancing.

In our case, I don’t think he was experiencing cognitive challenges that required handing off this task. Rather it was the physical changes in his vision and his fine motor skills thanks to his diagnosis. This was an ‘aha’ moment for me. It isn’t necessarily mental challenges that impact his capabilities, it could be related to his physical challenges including aging. Regardless of what necessitated the change, if we hadn’t been doing the banking together I wouldn’t have seen the difficulties he was having. Sitting together and balancing the checkbook on a monthly basis gave me an opportunity to oversee bills being paid and to make sure our finances were in okay shape. If we hadn’t been sharing this task, I’m not sure my husband would have come to me for help nor would I have been ready to pick it up when it became necessary.                              

Recognize and respect the differences between being tired and being exhausted. Ask for help before you reach total burnout.

I have a note on my desk that says “Have you reached your Braking point?” It’s a reminder that I need to be aware of my own needs and stop before I hit my “Breaking point”, that place where I am totally exhausted and not good for anything. My “Braking point” is the final safety check telling me it’s time to stop, reevaluate what I’m doing, and ask for help because I’ve reached the end of my personal reserve.

I know that CarePartner burnout, also known as compassion fatigue is real, I don’t want to experience it. I love my husband so much and feel that it is my responsibility to take care of him. The reality is that I need to make sure my husband is getting the best care available which may not be me. I need to be willing to admit that getting him proper care may mean bringing in someone else.

I’ve had a few days when I felt broken before I realized that it doesn’t do anyone any good for me to work that hard. A broken CarePartner is a risk to themselves as well as a danger to the one they love. When I am so tired I can’t see straight, I make mistakes, get grumpy and lose patience easily. I’m not able to provide the level of care my husband needs and deserves which is just not healthy or fair to either of us. I need to remember to “brake” before I “break” and we’ll both be better off.