art making in the time of Parkinson’s…

seeing red, both in life and in headlines

I continue to be both amazed and amused that I am able to make art while living through one of the most difficult time periods of my adult life. As I bear witness to my husband’s steep decline into Parkinson’s; as he loses more and more of his independence and thus becomes more dependent on me; as my workload increases; as I assume responsibility for the myriad of tasks he has always done for me, our home, our family and community; as each day of my life is filled with more and more time consuming tasks; I make art. In fact this week I have two pieces running concurrently. Both are mostly red, which is a great metaphor for my current mood.

As a ‘recovering’ workaholic, I know I am up for the task. Actually I don’t think about it much, I just do. And do and do and do. My multitasking abilities are still on point, halfway into my seventh decade, which I find very reassuring, as dementia runs in my family. I mostly sleep well, without any medicinal help, but often wake up at 5 or 6 for the day, which is very strange for me; having never been much of a morning person. And yet I am very aware how important it is that I be present in my body, as it is when we are so distracted that accidents happen. And breathe…

Yesterday was a milestone day in that I took away his car fob. I have been concerned for a while that his neurologist said it was still ok for him to drive when he can barely stand up, hardly walk, and falls constantly. I kept saying we needed him to stop driving before an accident and not after. And yet he still drove; often too slowly and too close to parked cars, but he was ok he assured me. I was just overly cautious. It was ok, until it wasn’t.

His PT caregiver informed me he had run a red light, then stopped dead in the middle of the intersection and nearly hit two people. I immediately scheduled an assessment of his driving, and in the meantime took his car key. So far he has shown no interest in driving my new car, but just in case I hid that spare key as well. It wasn’t an hour later he noticed and complained that the caregiver and I were just paranoid. I know it was the right decision and particularly the right time, before an accident happened.

As I mostly maintain my composure at home, I am releasing tears all over town. In the car on the way to buy groceries, I cry; in a Zoom meeting I weep, in the shower I sob. People worry about me, do I have support, while simultaneously not offering any. Actually the best support I have is available 24/7 and that is the Parkinson’s Caregivers Support Group on Facebook. There I go to learn, show empathy, concern and compassion, vent and weep. What a God-send.

And still I make art…for which I am immensely grateful.

Be well,

8 Responses to “art making in the time of Parkinson’s…”

  1. Martha Ginn says:

    “And still I make art.”….so good that you can and do. This will keep you in touch with the Carol that will get thru this. Glad your support group is helpful; mine was not. Roy gave up driving on his own. I could not cry; then when the cat got killed I was hysterical. Don’t question your feelings or reactions, just hang on and keep making art. 😍

    • tallgirl says:

      yes! i have said since day 1 that i do not want to lose myself throughout this process. clearly i am still holding on to that! thanks friend.

  2. Maggie says:

    Oh Carol!
    You may well have saved lives with your brave move and also dodged lawsuits. I’m so sorry for the trials that this Illness rains upon you and for what sounds so painful for you both. I see you and honor your journey. I am proud of you protecting your family and taking care of yourself. Sending love and strength and compassion to you, Maggie

    • Carol says:

      Maggie thank you so much for your kind words. Fear of what might have been was a big motivator for me. I thought long and hard about the added responsibility piled on
      me, but also enormous relief by finally taking the keys back.

  3. Cindy Kelleher says:

    I am so in awe of you! I don’t know that I could walk in your shoes and still have the grace and creativity you do. You did the right thing, as tough as it was. When I think of you, I think of the lyrics of “I Am Woman.”..Much love sent your way.

  4. Jan Treat says:

    My heart goes out to you in appreciation for the gift you give to all whose life you touch by sharing your story. I echo Cindy’s message with sincere admiration for your caring goodness, your ability to do what needs doing, and to continue to thrive through your art. You give voice to your own personal version of “I Am Woman…” & in so doing may you realize that you are also a gift to yourself. May you know comfort & peace in being Carol.
    Love & Hugs to you, Jan

Leave a Reply