April 18, 2018 - Titles and Labels

When I started imagining what our blog would look like and what people might be interested in hearing about, I began thinking about our entry into this new reality and how our vision of ourselves was changing daily, hourly.  I began thinking about the titles and labels… We all have a thousand titles and labels that get assigned to us as we go through life.  Some of them are tossed at us by others, unwanted, and we deal with them as we are able.  Some we will reject, some we will embrace.  Some of them we choose, and we carry them proudly through life – mom, wife, best friend.  Some we also choose, though not as happily – ex-wife, former employee, etc.  These are all things that describe who we are, who we were, what kinds of choices we have made in life and what sort of experiences we have built.

Last Saturday morning I walked into our first Parkinson’s support group and I suddenly had a new title – Parkinson’s Caregiver.  There were over one hundred people in this room and it was divided neatly down the middle between those who have the diagnosis, and the ones who were standing alongside them.  I was suddenly tossed into a random group of people I hadn’t even known existed an hour before, and there was a heavy feeling that everyone in the room knew a lot more than I did about what my future looked like.  I kept having this strange lightheaded feeling.  I was in a seminar, in a room full of people learning about a particular topic (PD and exercise in this case), as I have done a hundred times throughout my career when I was learning something new.  The lightheaded feeling was the constant realization, over and over again, that I could not decide at any moment that I wasn’t interested in learning about this.  I couldn’t get up and walk out if I got bored and decided I wasn’t interested.  My new title is not one I can drop, or dismiss, or ignore.

Mo and I have been dealing with a pseudo-reality of Parkinson’s for a long time.  We, as many others have, were on the diagnosis rollercoaster for a long time, with some misfires and side trips into misdiagnosis along the way.  But, there was always the idea of Parkinson’s in the background.  The internet makes it very easy to put a face to what a life with PD looks like, whether it’s pictures and videos of someone’s tremor, Facebook support group posts, or Reddit forums.  I have tried to imagine what a caregiver role looks like, but my mind rejected it.  My mind could only see elderly people that couldn’t get out of bed, but we are still young!  Ok, maybe we are not so young anymore, but we are definitely not in the typical PD population.   I couldn’t put form to the idea of being a caregiver at 46.  How could I work and take care of Mo at the same time?  What if something happened to ME and I couldn’t be the caregiver anymore?

There will be many people who will probably ready this and dismiss my concerns and fears about being a caregiver because of the typical slow progression of PD.  Nothing to worry about now!  Worry about it in 10 years, in 15 years, in 20 years!  But, one thing I have learned in the last week – being a caregiver doesn’t get put off until ‘things get bad’.  Caregiving is more than helping someone out of bed or buttoning a shirt or pushing a wheelchair.  It starts with understanding that your job, now and forever, is to be the bedrock underneath your love, no matter what that entails.   It’s hardening yourself into that foundation that will support them and provide whatever they need.  Right now, it’s just making sure that Mo doesn’t go through any of this alone.  I am at every doctor visit, I am researching medications, I am the monitor of symptoms.

None of this is easy.  Knowing it has slow progression doesn’t make it any easier to deal with.  The very definition of this disease and my role as a caregiver means that as time goes on my love’s health will diminish more quickly than mine will, and he will be pulled away from me to a place I cannot follow.  The clock has started to tick, and that imaginary timepiece in my head is incredibly loud.

I am not here as an expert on ANYTHING, but I am here at the very start of my role as a caregiver and to hopefully share some of my journey.  I know there are probably people like me out there, scared and confused and worrying about things that are coming at the same time they are worrying about all the immediate things that follow a diagnosis.  Maybe I can provide some comfort?  Maybe just knowing there are other voices out here in the dark is a help….

Our blog will be a joint effort, some of my voice and some of Mo’s voice, as we focus on dealing with all of this together.  We will get through this together, and hopefully provide something to others who are in the boat with us.  Thanks for listening.

Tami O.