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.

Our plan for retirement was to travel. I envisioned cruises, group tours, road trips and exotic destinations. I did not expect that we would have a third partner called Parkinson’s along on the trips. Needless to say, this additional party has meant that we must plan more carefully and be ready to adapt to challenges that pop up along the way. It has definitely limited what we do, where and how we go.

My husband no longer drives so the long road trips we discussed mean that I get to spend hours behind the wheel and he is the passenger. Getting in and out of the car can be challenging and then we add the fact that he is sitting for extended period of time and it gets worse. As a matter of fact, sitting too long in a car, on a plane, train, bus or boat is difficult for both of us, we need to be able to get up and move around. Otherwise, we need to add a day to either end of trips to allow for recovery from the travel ordeal itself.

We can still go places as long as we understand that things can change and do our best to be prepared. If we talk about the challenges we might face, we can be ready for them if they happen. We do our best to plan shorter fights with layovers that force us to get up and move. We don’t try to drive straight through to long destinations, instead planning shorter legs to the trip with carefully thought about how many stops to make. We accept that life is not what we expected it to be, but also that it can still be what we want it to be as long as we are willing to adapt and keep on trying. Who knows what wonderful and exotic things we may find as we modify our travel to be closer to home?

There are things that my husband can’t do anymore that I am still able to do. I think of the big things like driving, but there are smaller changes that can make his everyday more difficult. PD has impacted his sense of smell and taste, his handwriting, his speech, his balance. He likes to focus on the things he can still do, but sometimes I think about his challenges to remind myself to appreciate what I have. It sounds a bit selfish, doesn’t it?

Thank goodness I can still drive, otherwise we would be dependent on public transport or the goodness of others. And, regarding my sense of taste, I am the primary cook at our house, without the ability to know what tastes good, who knows what I would try to feed us? The fact that I am steadier on my feet allows me to help him when he isn’t, but it also allows me to do certain tasks which help keep us in our home.

Beyond the things that I can do for us, I am still able to do many things for myself. I recognize that aging and illness may impact my abilities and that I need to be grateful each and every day for the experiences I have. I am still able to work in my garden, walk my dog, write. I watched my parents, and now my husband, adjust to the losses and keep on going. I hope I can move forward with as much grace and acceptance as age starts to take its toll on me.

When I see my husband struggling with a task, I am often tempted to take over and do it for him. I know that I can get it done sooner and with less frustration for both of us. But, is that really what is best? If I step in whenever he struggles, won’t he begin to look to me to do more and more as he does less and less for himself? How can I know when I should step in and help and when I should stand by and let him finish, even if it takes a while?

The only hard and fast rule is that I always step in if he is putting himself or someone else in danger. He doesn’t drive, climb ladders or operate power tools anymore period. Then, I always ask if he wants my help before I step in. If he is working on something and feels he can do it by himself, I don’t want to interfere. I never want to give him the impression that I think he is incapable of doing things, but rather encourage him to work to his capacity. And, I am often surprised at what he can still do without my intervention.

While we are both on this journey with Parkinson’s Disease, we are also both on very different trajectories. My goal is to be here for him when he needs me, his goal is to continue living his life as fully as circumstances will allow. I need to remember this and stay out of his way to make sure I am encouraging his activities, not limiting them. He has a life to live, I need to let him.