A Parkinson's Caregiver's Story

Caregivers are an important part of the PD community. Their praise  is not sung enough. The following was written by my friend Amy. Her husband was diagnosed with Parkinson’s in 2013. I asked her to write this because she once told me that she feels privileged to be part of this with Mike.

“Expect the unexpected.” This is the motto of the Experiment in International Living, a program I was part of when I was seventeen and living with a family in Sweden.  As a teenager and young adult, I interpreted this motto as a call to be adventurous, risk-taking, and prepared to welcome new challenges – embrace an unplanned, unpredictable life. It seemed to offer an exciting way to live.

I got married late in life at 43, and became a mom even later at 45.  Allowing myself to settle down and cherish a stable, fairly predictable life was actually quite wonderful.  I found Mike, my husband, a childhood friend.  We had grown up in a very close and safe cooperative community north of New York City. When Mike and I had our daughter, our family of three experienced a lot of fun and happiness, as well as life’s challenges, losses and hard times.  

Mike was diagnosed with Parkinson’s disease six years ago when he was 63. Our daughter was about to graduate from high school.  We both were shocked, frightened and heartbroken.  I knew about Parkinson’s as my father was diagnosed with PD when I was 26. He died when I was 52.

Parkinson’s is a weird illness – a real wild ride.  In our PD community, we say it’s a “snowflake” disease in that no two people experience the illness in exactly the same way.  I  soon discovered that Mike’s symptoms, level of functioning and moods could change from day to day and hour to hour; and my old motto, “expect the unexpected”, came back to me and became my new motto.  I am married to a brave, resilient, at times anxious, depressed or angry man – a PD warrior who is not afraid to ask for help when he needs it and can laugh as hard as he did prior to the diagnosis.  The challenge for me is to do my best to be as helpful and available without enabling him to be so dependent on me that we temporarily slip into the roles of mother and child.

I love to be spontaneous and also like to make plans.  Now, I’m constantly learning to let go of control and accept that, at times, plans will fall apart. We decide to meet friends for dinner and a movie.  We might end up doing both; or just one thing; or Mike is too sick to attend so I go alone; or we cancel.  All have happened.

We plan a trip, and maybe it happens as we had hoped; or Mike joins me but has to spend much time in bed; or he freezes and shuffles and possibly falls requiring that he sit in the transport chair while I push him;  or we cancel the trip; or I go without him and we get friends and family to stay with him and help him as much as he needs while I’m gone.  All have happened.

Here is some of what I have learned and am still learning:

1. Focus as much as possible on being in the present and capturing pleasurable moments as opposed to being torn apart by future possible scenarios, worries and fears.  For a part-time pessimist, worrywart and usual realist, this has been important work for me.  It has allowed me to really enjoy how much Mike and I laugh together, rage at politics together, adore live music, enjoy the beauty of nature and our home full of art, and being with our beloved daughter as well as our family and friends.
2. Accept what is. Research what can possibly be improved or changed, and then be active in bringing them into being.
3. Mike and I are partners.  We agree about encouraging him to do as much as he can for as long as he can. We work to maintain that delicate balance between dependency and independence, separateness and togetherness.
4. Be as patient, forgiving, accepting and honest of both myself and Mike about our feelings, needs and limits. Sometimes I feel sorry for myself. Sometimes I want to run away from the demands, limits and worries that this disease imposes on us. I mourn the loss of how it use to be. I try to accept that this is just part of the process…
5. Voice appreciation, gratitude and love for each other as much as you can.  This is a hard, at times lonely, journey we are each on. We can talk and listen to each other’s experiences, but each of us is alone in how we really feel, and what it is like for each of us.
6. No one, no matter how close they are to you, can fully grasp what the PD experience is like until they are in it.  I wish I had been more patient with, more understanding and supportive of my mom for all those years she dealt with my dad’s PD.
7. I am happy for Mike when he is able to pull it together to be fully present with others when we get together with friends. However, I feel very much alone and sad when we return home and he crashes, exhausted, energy spent, dyskenias running rampant and he is unable to engage with me or even with himself.
8. I do my best to encourage others to ask me or us what we need as opposed to assuming they know what is best for us. 

I am an extrovert, and community has always been important to me. I am beyond grateful that Mike introduced us to the PD community.  He began by attending the Dance for PD class, and came home saying “I found my people.” I later joined him in attending dance class, and this is where we eventually met Peter and several of the others who have written on Peter’s blog. We soon connected with the local PD Active group, which further opened doors to more classes for Mike and new deep friendships for both of us.  I once said in the dance class that I was very thankful for “the most wonderful community we never wanted to be part of.”

Today the sun is shining;  I hear birds chirping and children laughing outside.  Mike is napping downstairs.  Soon I’ll make dinner, turn on some music or MSNBC.  We’ll decide which series to stream for a few hours, take our respective medications, read, snuggle and sleep (hopefully without nightmares).  Tomorrow will be another unpredictable day, and I’ll do my best to navigate this life we’re living — striving for balance between dependence and independence, hardship and joy, frustration and acceptance. There is a lot of suffering out there – some less than ours and some much more. I accept the sunshine and sorrow of my life and always remember that good days are still possible.