Author: cptricia

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.

There are differences between caregiving and CarePartnering, yet both have a place in your journey.

I walk a tightrope everyday trying to figure out whether I am my husband’s wife and partner or his caregiver and housekeeper. The answer is that I have to find a way to be both. Somedays it will be more of one than the other, especially as his symptoms progress and his needs increase. Since we are alone in our house 95% of the time it is essential that I be able to handle both roles, so I work to find a balance that keeps everything going.

It works best when I can combine the two roles. There are certain things I do with him that fall fully into the caregiver role. However, if I stop in the middle of those tasks and drop a quick kiss on his forehead, it reminds both of us of who I am and why I’m here. Helping him out of a chair leads to an opportunity for a quick hug before moving on. Even something as simple as squeezing his hand takes me out of the caregiver role even if just for a moment. 

I don’t want to say that there is anything wrong with being his caregiver because, as things advance, I see more of my days headed there. My fear is that I could easily become just that and lose sight of the loving component of our relationship. When we have tough days it’s difficult to think about hugs and kisses, I am simply focused on getting through. I’m pretty sure that’s how my husband feels too. If I practice doing more of those extra things now, perhaps I’ll remember them on days when life is more challenging and our PD experience will be more bearable for both of us.

Practice healthy choices for yourself, not just for your loved one.

Before we started on this journey, I was exercising on my own and trying to make healthy life choices for me. Since we’ve been travelling with Parkinson’s, many of my decisions are tied in with what my husband is doing. In some cases, that has been good and I am healthier for it. As his symptoms progress, however, I need to be mindful about my personal plan to make sure it meets my needs because they are becoming increasingly different to his.

I’ve mentioned before that the demands on me physically increase as his capabilities decrease. When we were exercising together, I was able to adapt his program by using heavier weights or standing when he was seated. He is now going to a PD specific class and CarePartners are not welcome. What I finally came up with instead is membership at a local gym. I drop my husband off for his class, drive to my gym and work out for 30 minutes, then get back just in time to pick him up. We go twice a week which seems to be working well. I also go to a yoga class one day a week while his Wednesday in-home care is here. There are a couple of zoom options that we still do together when we can and that more than meets both of our needs for exercise.

It’s not just the exercise component of our lives that has changed, I need to conscientious about food choices moving forward. It appears that he is beginning to have more difficulty chewing and swallowing which may impact what he can eat. So far, I have been preparing the same foods for both of us but recognize that may need to change in the future. It will be interesting as I try to make sure we both eat healthy meals and yet in a format that works for each of us. Watch for future blogs as I figure out where this leads.

You don’t always have to be the strong one.

There are times, like today, when all I want is for someone to give me a great big hug and tell me that it’s all going to be okay. It’s weird because today hasn’t been a difficult day, no falls or major incidents, yet I just feel the need to let go and let someone else take over for a minute. I really think that having just that minute would be enough for me to release the pressure that builds up. Then I could get on with my day.   

I could turn to my husband, but then I feel guilty because he thinks my stress is all his fault. It’s not. Let me say that again, I know it’s not. I don’t blame him for this disease and the challenges it has brought, nor for the additional responsibilities I have taken on around our house. I see his struggles and the strength he needs to keep going on a daily basis. I certainly don’t want to be a drain for him. Unfortunately, unless I go knock on the neighbor’s door, there’s no one else around and I’m pretty sure they wouldn’t understand.

So, I find a quiet time when I can come to my room, take off my superwoman cape, and let go of all the expectations and duties. I take that minute I need to practice self-calming techniques. I close my eyes and breathe deeply, I massage my face and hands, especially those acupressure points between my eyebrows and between my thumb and forefinger. I wrap my arms around myself and say the words, “you’re okay today” because I know it’s true. I am strong enough to face whatever life as a CarePartner decides to throw at me, I just don’t have to be all the time.

For more information on acupressure points visit the Healthline webpage Pressure Points for Anxiety; additional information on breathing techniques can be found at Relieving Stress in the Moment by Livongo-zen.com.

Attend medical appointments with your loved one and share your perspective so the doctor can get the whole picture.

This afternoon my husband gets to see his neurologist/movement disorder specialist. We visit in-person once a year and do a virtual visit once a year. In the beginning I went along because I wanted to learn as much as possible about his diagnosis. I quickly figured out that it is valuable for me to be there because my husband may minimize his challenges. In fact, I attend all my husband’s medical appointments including his vision and PT. I know his dental team and, while I don’t go in the room with him for those appointments, I do keep in touch with them. His entire medical team needs an honest assessment of his progress on this journey. If they don’t know about everything that is going on, they can’t recommend the best treatment plans for whatever their specialty is.

Preparing for these visits varies based on who he is seeing. Most of the time we will have a conversation about what we want to emphasize on our way to whichever doctor’s office. I jot significant things like falls on my calendar and we pull that out to review things that happened since we last saw them. When meeting with his neurologist, we often make lists so we don’t miss anything. I write a list and compare it to his so there are no surprises or difficult conversations in the doctor’s office.

The important thing to remember is that the doctors can only work with what they know. I schedule appointments at a time between meds when he is feeling strong and doesn’t get exhausted. They need to know that this may not be his typical presentation. There probably are times when my husband wishes I wasn’t there because of things I share, but it has to be done. And, if there is something I don’t have time or feel comfortable saying with him in the room, I reach out to his doctor before or after the appointment. The medical team appreciates having my perspective, my husband appreciates having a second set of ears in the room to hear instructions, and I appreciate being kept in the loop on his current treatment plans. It’s a winning process for everyone.