By A.C. Woolnough
A little while ago, I wrote a piece titled “It Ain’t All Bad.” Before anyone thinks I live in a fantasy land where Parkinson’s Disease is all glycerin and rose water, let me acknowledge that living with Parkinson’s is not a pleasant task for anyone. My PD brothers and sisters deal with it from one of two perspectives: the care partner or the PwP (person with Parkinson’s). A positive attitude can greatly influence the course of Parkinson’s, much less the trajectory of our life. I try to maintain such an attitude but get shut down on occasion due to apathy. Apathy is my major non-motor symptom. Although it may seem like depression, it is distinctly different. Apathy does not make me feel sad, guilty, shamed or suicidal. Rather, it is simply a feeling of lack of interest — in doing things, in being involved or being social. But I do know PwPs with severe depression. I have friends who live with slowness of gait and others with dystonia (muscle contractions causing jerking or repetitive motions) — often accompanied by pain. Throw in the folks with hallucinations and cognitive decline, and Parkinson’s is revealed as an incredibly difficult condition to live with. Don’t forget, it’s also chronic (it’s not going away) and progressive (it’s going to get worse). I’m amazed any of us ever smile.
Attention, care and concern are focused on the PwP. The care partner (also called care giver) often gets left out. I’ve acknowledged in the past that these folks are the real heroes. We, those of us with Parkinson’s, deal with many issues. The meds may make us nauseous; we may get frustrated not being able to do the things we used to; we may hurt all over; we may get angry about our dementia or cognitive decline; and we sometimes get pissy for no apparent reason. Let me share a little secret that often goes unseen. On occasion, or even more frequently, we take our hurt, anger, frustration and pain and dump it on our care partner. We get snotty, verbally abusive, we yell and scream, we withdraw, we do our best to make our care partner as miserable as we are. It makes no sense to attack the one person who is doing the best they can to care for us physically, emotionally and spiritually. But we do it anyway. They are there for us, and they make an easy target.
My angel and care partner, Pamela, has done a fair amount of work about care partners (including a presentation at last year’s Northwest Parkinson’s Foundation HOPE conference) and works with care partners in our region and elsewhere. While maintaining confidentiality, she has shared stories of care partners who are at the end of their rope — and do not have the energy to tie a knot and hang on. They feel as if they are drowning with no rescue in sight. Pamela wrote the following poem to help her crystalize what she has been hearing and feeling:
Wholeness into Pieces
Supporting one another—
Together we worked,
Together we planned,
Together we were each other’s right hand,
Now alone, supporting us both, is where I stand.
Exhaustion haunts me,
Memories taunt me,
Where did the “we” go?
Where did I go?
Longings whisper in me,
Shortcomings drown me,
Doing my best, still no rest.
Sorrow and guilt flowing through my veins,
Thoughts, positive and negative fighting to reign,
Speeding like a runaway train,
Smashing through my heart’s domain.
Stop! Stop! Damned disease,
I beg you please down on my knees.
My loved one is precious to me…
Leave us together, leave us in peace.
Pamela often asks me to just listen. I don’t have to (nor can I) always fix things. After painting this picture of life as a care partner, Pamela suggested I read it twice: once for my head and once for my heart. After doing so, I want to leave you, dear reader, with some simple suggestions. If you know a care partner, give them support, validate their work, or offer to help. Just be there for the care partner as they are for the person with Parkinson’s. Amazing, that sounds like the Golden Rule — some of us with PD need to be reminded.
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