parkinsons-disease

It’s okay to get angry and to express your anger as long as it is positive and directed at the right target.

By target I actually mean the real reason you are angry or the problem that is causing the anger. I’ve said this before, it is okay to be angry at Parkinson’s for the challenges we face, it’s not okay to be angry at my husband for things he can’t do anything about. However there are things that happen within that dynamic that make me angry, things he does have control over. I need to be able to express those feelings or they will eat away at me.

My husband will not accept assistance with certain daily tasks unless it comes from me. I get it, he’s embarrassed or uncomfortable when asking for help. But…and this is a big one…that help is often exactly what I need. Our caregiver is trained and ready to help wherever it is needed. When all she gets to do for him is stand by, it becomes less a caregiver role and more of a babysitter role. As soon as she leaves at the end of her shift suddenly he needs the toilet or he needs a snack or he needs something else. I get angry at him when he won’t accept help that is here and waiting for him.

A quick example, it was less than 10 minutes after our caregiver left the other day when my husband called for help in the bathroom. I was in the kitchen starting dinner prep. The disease may be why he needs the help but he does have some control over the timing. I have to admit that I shouted a bit, I was angry and really needed to let it out. Plus I needed for him to understand that this was a big issue for me. I think I accomplished both of those things, we’ll see if it makes any difference.

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.

Research into Parkinson’s continues but don’t wait for a cure. Encourage your loved one to do everything they can now.

I get often get information on new research breakthroughs for Parkinson’s Disease in my daily newsfeed. It is good to see so many scientists are working on this topic, however, it is still doubtful anything will lead to a cure for my husband. The latest note I received talks about a new imaging technique to see the smallest alpha-synuclein clusters with the hope they will be able to detect a pathway for early development of the disease. An exciting development, but they are only able to detect these in a post-mortem brain. This is not really helpful for those living with PD. It reminds me of when my father was diagnosed in the 1980’s and the doctors told him they felt he had Parkinson’s but couldn’t be sure until after he died so they could autopsy his brain for confirmation.

In the meantime, the only proven method of slowing this disease is exercise. Movement of any sort helps, the more the better. Funny since movement is often the thing PD targets first. Thankfully my husband has taken this advice to heart and tries to work out 6 days a week. He likes structured classes and does 2 days in-person plus 3 days on Zoom. We both go to the gym on Saturdays so he can get in some cycling. I think it is working for him because he was diagnosed 15 years ago and is still with me.

I am grateful for all of the research being done, but would like to see more of it directed towards reversing the effects. Until they do, I will keep encouraging him to do his exercises, keep taking him to his classes, keep going to the gym with him. It’s what I can now do to help him slow things down and preserve more of what we have. And with his focus on exercise, I’m also getting healthier. It’s a positive consequence for us both.

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.

Be kind to your loved one with Parkinson’s, be even kinder to yourself because this is a shared diagnosis and it will impact your life too.

I woke up this morning and greeted my husband with a cheery “Welcome to Tuesday!” I went through a countdown of the month to determine it was Tuesday the fifth of August. Only once I had finished did my husband speak, “It’s actually Thursday”. We both had a good laugh and I then redid the morning recap and corrected it to Thursday the seventh. What a way to start my day!

That’s really just one way that his diagnosis of Parkinson’s has impacted both of us. I do the morning countdown to remind us because our days are no longer known by their names, it’s what we’re doing relative to his disease. Tuesday and Thursday are Boomerang days because that’s when and where he goes for movement classes. Monday and Wednesday are caregiver days and go by the names of whoever is coming to stay with him. Friday is either known as a support group day or named after his coach on zoom. Our lives seem to revolve around the interventions we have put in place to help us manage this disease.

As his symptoms progress, more adaptations to our lives come into play. It’s important to be mindful of the foods we eat and how they are prepared to make sure he can manage them. We modify our home, age-proofing it if you will. We don’t go out as much anymore and only to familiar locations that are easy to access. Old friends drop away when we can’t participate in the same activities anymore. Much of our time is spent doing what we must to get through the day and little on those things we actually want to do so hobbies for both of us tend to go by the wayside.

Getting back to my original premise, it is essential that I be kind not only to my husband but also to myself. I am living as a CarePartner without a roadmap on this journey uniquely based on his diagnosis and progression. Parkinson’s is changing my life in ways I never really expected so I accept, adapt, modify, endure and give myself a break when I feel angry or frustrated about what we are facing. I can only do so much and there will be moments when I feel it isn’t enough. That’s when I remember to be kind and forgiving to myself while making the best of the situation we have both been put in thanks to this disease.  

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.

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.

Getting to know the people in your support network for more than the Parkinson’s connection may prove to be beneficial as long as differences in values don’t derail a much needed relationship.

We were having a family dinner a while back and started discussing politics, something we mostly agree on. I shared that we have friends who don’t necessarily hold the same ideas in our PD network and it is interesting to consider how they come to their views. Someone said that they believe all of their friends are of the same mindset, that is the connection that brings them together. In that moment I discovered another reason to be thankful for my husband’s diagnosis. It broadens my world to include those who may not have the same philosophical beliefs yet who share a common enemy, Parkinson’s Disease.

This disease isn’t selective so the people in our Parkinson’s community come from all different lifestyles and backgrounds. It’s easy to discuss the common thread that brought us together which is our hatred of PD, it’s not so easy to talk about current events. I do think that topic could lead to some very interesting conversations. I wouldn’t want to see our different viewpoints split us up because I need these folks in my life. While I would like to know them better as individuals and let them know me, I’m not sure quite how to make that happen.

The greatest value of being a part of this community comes from our shared experiences. I can talk openly about challenges I face in caring for my husband and ask their advice with difficult decisions. It is great when I can pick their brain on practical issues as well. They often have knowledge that can help me with daily challenges outside the PD world. Maybe someday we can find a way to respectfully discuss our differences and, I suspect, agree to disagree. The support we give each other is based on values and compassion that go beyond thoughts of politics or religion. In this friendship, does the rest really matter?

Self-motivation is sometimes difficult to find, especially when you’re trying to instill it in someone else as well.

As my husband’s CarePartner I get to wear many hats, one of which is coach and motivator. I am expected to help him stay motivated to exercise, take his medications, and continue his fight against this awful disease. I stand beside him on the good days and the not so good days and help him get through the on versus off times with his meds. It can be overwhelming as I try to provide positive support all the time. But who or what is supposed to motivate me?

I asked this question at a recent support group meeting and, of course, the first response was the one I expected most, we all do it out of love. As we went around the room, however, some other thoughts began to emerge. One person shared that they do many things simply because they need to be done and there is no one else to do them. Another person added that she and her husband kept to a schedule and it felt good for her to meet deadlines. Getting things done is gratifying but I feel we finally got to the core of the topic when someone mentioned they stay motivated by taking breaks. They swim several times a week and those breaks enable them to continue the work they need to do at home. I shared that when my husband asks for help I often stop and say “OMG, not again!!!” to myself before continuing on to do what needs to be done. Just that momentary break and release of frustration spurs me into the task at hand which is lovingly and patiently caring for someone with a chronic illness.

Self care is a difficult topic for CarePartners but it doesn’t have to be. Nothing is more motivating than taking a few minutes to simply step away from my role and relax. That might mean sitting quietly with a cup of tea and a good book or a quick stroll around the neighborhood. Neither of us asked for this disease when we committed to sharing our lives together, yet here we are. Now it’s simply time to stay motivated to find the best in each and every day no matter what that looks like.

The Parkinson’s community is larger and stronger than many of us realize and includes many wonderful and welcoming people. You never have to travel this journey alone.

I first learned this concept when I finally found the courage to reach out to a local support group. My contact was a phone call to one of the facilitators, a gentleman who had been diagnosed with Parkinson’s a few years earlier. He explained that he and his wife led a monthly group and shared some of his story while encouraging us to come to the next meeting. He assured me that we would be welcomed and that we would find good support and ongoing resources. We spoke for almost 10 minutes during that call and I understood that I had found someone who could help both of us as we faced uncertain and difficult times ahead.

When we got to the meeting, his smile was warm and welcoming as he brought us in and introduced us to his wife and then to a few others in the room. His Parkinson’s symptoms were mild yet visible; some of the others around us appeared further along in their journeys. It was obvious that we had found ourselves in the midst of a like group of people. I was so thankful that I finally gathered the courage to reach out because it was obvious these folks would have much to offer us. It actually felt like we had found a new family.

These memories are close to my heart today as this lovely man passed in his sleep last week. His contributions to the local PD community were so valuable. I hope his journey ended peacefully and that he knew how much he meant to so many of us. Rest in peace my friend and know that you helped us connect with a lifeline on this journey. You will not be forgotten.