My husband had an appointment with his neurologist yesterday. Earlier this week we sat down and had a conversation about where we both felt he was, especially as it has been 6 months since he had DBS surgery. I asked him to tell me what he thought were the 3 best things (pros) since the surgery and the 3 worst (cons), and I did the same. We wrote it all down and took it to the appointment with us. What I found interesting was that he struggled to find 3 good things but was quick to come up with the bad. I, on the other hand, had lots of pros and only 3 cons. Our perspectives definitely differed. It concerns me because if I am so out of sync with what he is thinking, how can I be providing the support he needs?

I know that we will see things differently, he is living the disease and I am just an observer. What this “check-in” has told me is that I need to be listening more to what he is saying instead of depending on my own observations. Just because he presents as more capable and in control to me doesn’t mean that is what he is feeling inside.

I need to learn to use my ears more than my eyes as we move forward. If I truly want to support him in his struggles, I need to hear and understand what he is experiencing. I can talk about what I am seeing and encourage him to continue trying, but in the end I need to respect his perspective. Because it is his journey, I’m just along for the ride. 

Actually, I wanted to say that those moments when you are truly on your own may be the only thing that stands between you and the craziness of being a CarePartner, but felt that was perhaps only true for me. Let me explain…

When I am with my husband, no matter what we are doing or where we are, I find that I am looking out for him. I try to access situations that might be difficult and make it easier. I am constantly on guard. Where does this hyper-vigilance come from? Is it a necessary component of my journey as I try to provide care and support for my husband? Or, as I suspect, is it just adding a layer of anxiety to my life that doesn’t really help anyone?

I don’t sleep well, haven’t for years, but it means that I am often roaming the house in the middle of the night. What I have discovered is that during those late-night hours while my husband is sleeping soundly, I am finally at ease. I can escape from the daily concerns of being a CarePartner and let it all go. It has become the silver lining to my insomnia cloud.

I recognize my need to bring more opportunities to let things go into our daily lives. I am as responsible as my husband for this co-dependent lifestyle and am working on going places without him, even if it is just to the store. There may be a time when I cannot leave him alone, I need to make sure that I am setting a precedent now so I can find a solution then.

It’s tough. We learn about this disease a little bit at a time as we watch the progression in our loved ones. In our case it started out as a tremor in his left arm. Within a few years, that tremor had moved up his arm, across his face and down the other side. His shaking became so pronounced that he couldn’t hold a knife to cut his food and, as he put it, shared his sandwiches with everyone around. Along with the tremor came stiffness and fatigue.

Thankfully, most of his challenges seem to be physical, cognitively he seems to be okay other than his brain does process things much more slowly. It takes more effort to get things done from walking to talking so many of our everyday tasks that I take for granted have become a major chore for him.

As his symptoms grow, I see less and less of the man I married and I am not sure how to reach him. So, I am trying to adapt. I cook foods that don’t require cutting, I avoid complicated conversations, I am there when I think he might need help with daily activities. Most of all, I am trying to hold fast to the love we share and make the life we have meaningful.

I wrote these words just a few months ago. Since my husband’s DBS surgery, we are no longer fighting the tremors or the stiffness, our new battles are with speech and balance. We are in a much better space, but the reality of Parkinson’s Disease never stops, it just finds new ways to challenge us. I always need to remember that our love is stronger than anything PD can throw our way and to treasure every moment we have.

I learned recently that a friend is struggling with their journey and I have been considering whether I should reach out to see if I can lighten their load. I recognize that helping someone else feels really good and helps me clear my mind allowing me to better see and appreciate the challenges I face as a CarePartner. I may be only an empathetic ear, yet it helps me to know that I can offer support and understanding. Plus, I get the reminder that I am not alone, their struggles may be mine someday and thanks to our caring network, there will be help out there for me when I need it too.

It is difficult for me to make that initial contact. I am as guilty as the next person of saying “let me know if there is anything I can do” knowing full well that the person struggling will not respond. What could I do that would work better? I can pick up the phone and make a call, I can invite them for coffee, at the very least I can send them message or email letting them know I am thinking of them.

What I have found is that when I let go of my own struggles and am there for another CarePartner, my perspective changes. The time I spend helping them is time spent helping myself. In their struggles we find a sense of shared strength and often build a new or stronger friendship. The challenges bring us together, the support gives us the strength to continue the journey on our own.

I was shocked when my husband was diagnosed with PD having seen my father go through a terrible fight with this same illness prior to his death. I didn’t want to accept this let alone the potential changes it could mean for both of us. When a second neurologist confirmed the diagnosis, I still struggled with questions of what it might mean to us and how can I make it better? It never occurred to me that I should be helping my partner accept what he was going through, I was too busy trying to wrap my head around my personal feelings.

That was more than a decade ago and I have since found that acceptance is not a one-time deal, it is an ongoing process. I had to learn to accept the challenges he was facing and the impacts those challenges bring to our lives together and me personally. I had to accept my limitations as I tried to help and accept that there would be times when I can’t. I had to accept loss but also accept that within that loss there were sometimes opportunities for growth. The most difficult thing I had to accept was the uncertainties, PD is an unpredictable adversary, we never know where it will strike next.

The key to my acceptance has been gratitude. It starts every morning when I wake up and see that he is here with me and that we have another day together. When things get tough, I take a moment to think about the things that are still going well for us and am thankful. We are strong and together we can accept whatever challenges PD chooses to send our way today.

Being a Parkinson’s CarePartner can be a lonely life. We are asked to do so much more than we ever expected and our partners may or may not be present in the moment to share the tasks with us. Their physical and sometimes cognitive or emotional challenges takes them away just when we need them the most.

I belong to several support groups that are there just for me as a Parkinson’s CarePartner. These meetings of likeminded partners bring me a sense of belonging and peace that I don’t find in other settings. Sharing with other people facing similar situations is so encouraging and often gives me positive pointers that help me make it through another day. We talk, we laugh, sometimes we cry but most importantly we connect. These friendships bring a life affirming component to an otherwise challenging role.

In addition to my Parkinson’s groups, I try to maintain friendships outside the PD world. This can be a bit more challenging as my schedule as a CarePartner doesn’t allow for a lot of free time, but I feel it is worth the effort. Spending time with other people who bring a broader perspective helps me stay open to the world and reminds me of who I am outside the walls of our home. And, it reminds me that it’s okay to have fun with and without my Person with Parkinson’s.

I have a physical space that I have created in our house, a room where I can be by myself to enjoy a cup of coffee and know I won’t be disturbed. The only problem with this happy space is that I don’t always have the time to go there, I can visit the places in my mind anytime and anywhere to get the breaks I need. 

I have developed lots of mini-escapes, happy thoughts that I can bring to mind that lighten the load throughout the day. It might be taking a moment to breathe and visualize one of my favorite places such as the coast. It might be closing my eyes and enjoying a sound or a fragrance. It doesn’t take much to find a pleasurable memory and just holding that thought for a minute or two can renew my spirit and get things going on a better track again.

Some might call this escapism or avoidance; I call it a pleasant diversion that creates relaxing vibes throughout my body. The term “find your happy place” has been around since the 1970’s to define a space, whether real or imaginary, that makes you feel safe and happy. The amazing thing is that it is that it works. Just putting my mind into that “happy place” can create changes in my brain that fool my body into relaxing. If just smiling can make me feel better, why not take it one step further and imagine myself on the beach in the sunshine while I am smiling. How can I not feel better?

When we first found out that my husband had Parkinson’s Disease, I went through a lot of confusing feelings. At first I was shocked, even though he had a tremor I never expected this diagnosis. I was scared of what this might mean and unsure about what we should do next. I was angry. My father had Parkinson’s, why does my husband have to have it too? Why him, why us, why me? I tried to be strong for him and not let it show, but it was a difficult and emotional time.

Now, more than a decade into this journey, I can honestly say that our life with PD has not been anything like I anticipated. He has his good days and his bad days and so do we. Some of our duties have shifted between us and there are things we just don’t or can’t do anymore. It has been okay. So, why am I still struggling with feelings of guilt that he has this disease and not me?

Perhaps my guilt lies in the things I can do that he can’t do anymore or maybe it’s the things we used to do together but can’t anymore that make me feel this way. What I need to remember is that he has the disease, not me. I did not give Parkinson’s Disease to him nor can I take it away. I need to continue living life as fully as I can for myself and encouraging him to do the same. Any feelings of guilt are a distraction to the feelings of thankfulness that I should be having, thankfulness that we are still together and still moving ahead.

It is so easy for me to get caught up in our world of PD and to forget that I deserve to have a life outside of those parameters. My days are sprinkled with reminders of his diagnosis such as his pill reminders going off regularly or the exercise classes we both attend. Yet, my days also need to be about finding ways to fulfill my own needs so that I can be whole and healthy. I do take time to write in a journal and to create my blogs, but is that enough? Are those things not always about PD and the impacts it is having on our lives? Wouldn’t it be nice to have something more?

How do I balance my needs against his? How do I find things to do that won’t take away from our time together but will enhance it? How do I better understand that things I do outside the PD CarePartner role can help me be better at the things I do within that role? How do I explain all of this to him so that he doesn’t feel left out and encourage him to also find some additional outlets?

My current check-in with myself is not going so well. I find that I have been struggling to adapt to his new reality post DBS surgery. His needs have changed and I have more time on my hands. I need to figure out what I want to do with that time perhaps by doing things that enrich my life. I need to evaluate where I am and where I want to go on this next portion of our journey and then take a step forward knowing that he will be here and support me in any new endeavors.

Our 20^th wedding anniversary is coming up in September and I had always thought we would go back to Lake Tahoe where we were first married to celebrate. We’ve been talking for several months about taking a road trip, stopping along the way wherever the notion struck us. It was to be a leisurely journey culminating in a ceremony to renew our vows. I was even considering inviting our family to fly in and join us on the day. It was to be the big wedding adventure we never got to have originally. It seemed like a great way to celebrate the past twenty years, then, we sat down to actually plan it and reality struck.

First, we cannot just get in the car and drive south hoping to find a place to stay. Randomly wandering doesn’t work, we need to know that we have a bed at the end of every day. Secondly, we would need to drive for four or five hours every day to get to Tahoe in a reasonable timeframe. Driving for even a couple of hours wears me out and knowing that I would be the only driver on this trip is exhausting before we even get into the car. Road trips are just not going to work in our new PD lifestyle.

So, we took a different look at what we really like to do now. We like the sun, we like the beach, we love Hawaii. Instead of driving to Tahoe, we are flying to Kauai. We’ll have a beachside room with all of the beauty the islands offer. The plan for our first day there will be relaxing on the beach to allow us both to recover from the flight. We’ll have a wonderful, stress free celebration of our twenty years together and then fly home renewed and ready for twenty more.