mental-health

We don’t have to be miserable to keep our loved ones happy. If you are, perhaps it’s time to try a different approach.

Forgive me if this sounds judgmental, it certainly isn’t meant to be. I get how difficult life can be when caring for a loved one with Parkinson’s Disease and speak from a voice of experience. I have been in that place where I was exhausted, frustrated and, honestly, pretty miserable. It’s not a good place to be and no one should have to live there. It was the realization that my husband loves me and would never want to cause me so much distress that finally gave me the courage to step up and talk to him about what I was feeling.

Probably the most difficult conversation was when I was actually able to say to him, “You may not think we need help, but I do.” I was wearing myself out trying to keep up with everything around the house and care for my husband too. There were never enough hours in the day and the things that got dropped were always those that mattered to me. I was simply going through the motions rather than living life fully. It wasn’t good for either of us. It was time to take a new approach, whatever that looked like, and my husband agreed.

Thankfully we had the resources to hire outside help. It started with yard work and soon I added some in-home help too. We now have a gentleman who helps with our lawn care, a caregiver who comes twice a week and a cleaning service who comes in twice a month. It’s not how I thought we would be spending our retirement funds, but it certainly makes things easier and gives me the opportunity to have a life too. Caring for my husband is still difficult at times, but it is not unbearable. And we are both able to find pleasure in each other’s company again, something I was afraid Parkinson’s had taken away forever.

Constant stress is a component of the journey. Be mindful of the tools you use for relief.

I have mentioned this statistic before, more than 60% of spouses caring for their partner with a chronic illness die earlier than their non-caregiving peers. The constant stress we face is a huge contributor to our higher mortality rate. I am on duty with my husband 24 hours a day and, other than the hours when we are both sleeping, I am checking to make sure he is okay. I even sometimes wake in the middle of the night and listen for his breathing. This continual state of alert takes a toll on my health.

My stress reduction plan includes exercise, deep breathing, taking breaks to read a good book and journaling. Weekly yoga classes provide an opportunity for meditation, neighborhood walks are great for clearing my head. Reading alongside my husband allows for a mental escape and gives us something to talk about. In those moments when I feel like I’m about to explode, nothing calms me faster than to step back and take a couple of deep breaths.

I often joke with fellow CarePartners about the value of a good glass of wine on a long and difficult day. Or even on a normal day, come to think of it. Those single glasses of wine are acceptable as long as they are only one piece of my stress relief program. Chocolate and other sweets are also options for dealing with the daily pressures. Again, not a problem when eaten in moderation. I just need to remember that sticking with my healthier choices like exercise and journaling keeps me present in the moment, which is always better for my husband and for me.

For more on the stress we all face as CarePartners, visit “Caregiver Health” on the Family Caregiver Alliance website. To learn more alleviating some of that, visit “Caregiver Self-Care: Caring for You” on that same website.

Don’t downplay the challenges you are facing as a CarePartner. Your journey is just as difficult as that of your loved one.

When I started writing this blog almost six years ago, I wanted to share what I was facing as a PD CarePartner and perhaps be able to figure some of it out. What I am saying is that if you are reading this hoping to find answers for your loved one, you can stop now. However, if you are looking for what you might face on your journey loving someone with Parkinson’s Disease, read on and I hope you find my words helpful. Because the diagnosis your partner received will impact the relationship you share and will change your life forever.

My husband has a group of medical professionals who are all focused on keeping him healthy. I think that is great but wish that, just once, one of them would turn to me and say “how are you doing?” They ask for my perspective on him but never check in on me. They watch for anxiety and depression in my husband but no one is looking to see whether I am okay. Let’s face it, having the person I love taken away a little more every day is a classic situation for me to be anxious and/or depressed. It’s like his doctors see me as a therapeutic tool or aide, not a person with feelings of my own.

Yes, my husband is the one having to fight the symptoms on a constant basis yet I am the one who has to stand by and watch. I have to be ready to step in whenever I am needed. I am in a constant state of alert just in case something happens. Add to that the additional chores around the house that I find myself responsible for now. My life has been upended as much as his. So, I don’t feel guilty for resenting the changes this disease has brought to our lives and I don’t dismiss my pain and loss.  My story, all of our stories as Caring Partners matter too.

Worry, anxiety, anticipation can be as exhausting as physical activities. Find ways to give yourself a break from these stressors.

I look back at my day and wonder why I’m so tired. I don’t recall doing anything that was physically taxing yet I feel like I’ve run a marathon. It was a day when we didn’t have any outside help, could that be the reason for my complete exhaustion? My husband was having a low energy day so I was more on alert than usual, watching him to make sure he was okay, perhaps that has something to do with it all?

Taking a break on those worry filled days would be great, but how? Most importantly I need to recognize what’s  happening. Too often I am so caught up in the moment that I can’t see the bigger picture. Taking a break has to start by simply taking that break. Give myself a moment to think about what’s going on. If my husband is having a tough day, is there anything more I can do to make it better for him? The answer is usually no. Next I need to ask if there’s anything I can do to make the day better for myself. That answer is usually yes and involves either taking a walk, sitting with a good book, or maybe just some deep breathing. Whatever will help me break the cycle of stress and anxiety. Once that’s done I can get on with my day and let him be.

It may sound self-centered, but unless I am willing to actively put my needs first, I am not able to be here fully for my husband. I know that I have said this before, yet sometimes I forget that my mental and physical health is more important to the dynamic of our journey than his. My husband is on this PD trajectory and, while we can’t control it, we can work together to fight it. My worry, anxiety, and anticipation of what is going to go wrong next are stressors that negatively impact our lives and are things I can control. In order to be here alongside him, I must take care of me. It’s not selfish, simply a fact of my life as a Parkinson’s CarePartner.

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.

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.

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.