Twenty five years ago I was primary caregiver for a friend with brain cancer. He was also my employer. It started innocently enough with my feeling so badly for him that I worked overtime to find a temporary doctor to pick up his practice, eventually sold the practice, started ferrying him to doctor’s appts, then for Wednesday walks in the park and fly fishing, then making dinner occasionally, then occasional sleepovers when his paid caregiver could not, then oh I want to see the Grand Canyon before I die, so wheeling him along the rim in a wheelchair, etc. All the while my patient husband kept the home fires burning and the kid fed. I stopped going to the gym, my hair grew out long and haggard, I put on 20 pounds. I lost myself in caregiving and vowed when it was over, I would never let that happen again.
That experience changed my life in that I got to smell the roses, and understand that so much of what we fret about in life is really not important. At that time he was my first good friend to die of cancer. There have been three more since. It never gets easier to witness, to feel or to grieve. That experience also changed my outlook on taking care of others in their time of need.
The first big change was I stopped working so hard, for other people and started pursuing art, a subject that was ironically disdained by my authoritarian father, despite his vast collection of other people’s art-making. I took all sorts of workshops and classes on mark-making and creating original textile work; which filled my well to overflowing and has sustained my spirit for the past two decades.
Meanwhile my husband was diagnosed with Parkinsons nearly 11 years ago after a lifetime of relatively decent health. He was stable for all of 9 years and two years ago began a descent into the ravages of his disease. I was fully aware of my commitment to not lose myself in caregiving again, and to making my art-making a high priority. I refuse to surrender my autonomy again.
Slowly, he lost function and mobility, then his ability to drive. More and more responsibility piled onto my plate. I was ever mindful of taking better care of myself this go-round with caregiving, and yet quite quickly over the past 3 months, it has caught up with me. I started suffering debilitating, acute & crippling knee pain, which has further isolated me. Now, here I am again, in the caregiving bubble, immobilized with acute pain, fighting for my survival. I am fighter though, likely considered stubborn by many, but I refused to accept my debilitation as a normal physical ailment. I had been to this rodeo before.
Through a lot of hard work, going back to therapy and working with a homeopath, I figured out it is grief that is manifesting in my knee. Which means I have to work extra hard at taking even “better” care of myself. I have to keep talking to him about how caregiving him is impacting me; which is difficult as one of his deficits is he has lost his empathy and compassion. There is zero appreciation for this work I do daily to keep him safe and the home fires burning. I have to continue my own life. I have to cry, a lot. I have to take my expectations of myself way down. And I have to prioritize my art.
In January I applied for membership in a national art organization that I had learned about from a colleague . I had many reasons to apply, yet at the top of the list was maintaining my autonomy. The application process was arduous and complex, and I proofed my application 7 times before sending it off. I told no one except my web designer who I was working with at the time.
I received the great news on April 1st (no foolin’) that I had been juried into the National Association for Women in the Arts, founded in NY in 1889 to empower living women artists. There are no chapters on the West Coast so I also joined the MA-RI chapter and starting submitting work to different exhibits. In just three weeks’ time, my work has been juried into several exhibits.
Currents 13
Currents 13 was juried into an online exhibit on the NAWA site, titled From Landscapes to Mindscapes the month of May. Keeping Up Appearances 1 and Keeping Up Appearances 4 were juried into Female, NAWA, Berkshire Artist Museum, North Adams, MA June 14- October 7, 2023
Keeping Up Appearances 1
Keeping Up Appearances 4
And Fire & Flood 3 is winging off to NYC for the NAWA 134th annual member exhibition, June 16-July 1. I am awaiting results on another submission and the future brings the potential of many more exhibits including the new members exhibit in NYC in November and an exhibit of artists who volunteer more than 6 hours a YEAR, which should not be an issue for me!
All this is to say, that in spite of the burden of caregiving and witnessing a loved one’s light diminish, I am managing through great perseverance to keep my own light burning.
You are an inspiration to all, including those who have cared for others. After being a caregiver to others throughout my whole life, your words are very relatable and validating for all us givers. Our own autonomy and creativity, without always putting others ahead of ourselves, is crucial for living a fulfilling life. The way, for me, is practicing this while being loving and caring to others who need my support. The balance and equanimity is my practice. I so appreciate hearing your journey and applaud your vulnerability and resilience.
Art is our best therapy and is freedom!
thank you so much for this, Rhonda! you do know this journey all too well. what’s sad really is how very few people speak of it, and yet, especially at this age many of us are dealing with either an aging parent or aging spouse. for me to not speak of it would probably take me out!
What a wonderful inspiration to us all, Carol. I still struggle with helping others at the expense of my studio time and your message is full of hope. XO Maggie
thank you so much Maggie for your kind words! i did not mention that currently my artwork is all about the caregiving journey. it is additional therapy! xo
I’ve always thought of you as a really strong lady, Carol – and reading your story confirms that. Hang in there and continue to hold on to those things you need to focus on to keep yourself on an even keel – including taking a bit of respite time every now and then, like the get-away I read of a few weeks ago.
thank you so much Alison for your comments and encouragement! i have so far canceled two trips this year, but even yesterday’s jaunt to the beach (30 mins away!) was like a mini-vacation respite. i need to remember to do such things more often.
Carol, you are an inspiration to us all. I am sorry you are going through this – some people have more than their share of the caregiving role. I have gone through some with my mother and my husband, and a smaller role with a brother. You confirm my belief that art is an important – vital to some of us – component for some of us. Art is potent as a healer, as a ladder out of depression, as a soother, a distractor, a mood lifter, a comforter, a confirmation of one’s voice, etc. etc. Bravo.
Thank you Cindy, and yes you are spot on! My latest work is about being witness once again. It is incredibly healing to design. And you have definitely had more caregiving than your share. Caregiver over-doers unite!
I enjoy reading your posts Carol.
Not only are you a gifted artist, but also a gifted writer.
I remember you both from years back in connection with the Swedish lodge.
Congratulations to your success and hard work!
Thank you Linnea! Is the lodge still in existence, or did Covid kill that too?
I am so proud of you, and always in awe, that you took that step to take care of yourself. Two years ago, as we were coming out of COVID lockdowns, I had a major anxiety episode in dealing with Mike’s evermore pronounced introvert temperament (I have no problems with introverts only when they use that card). Thought I was having a heart attack. Long and short, I called Kaiser and now am in therapy with a clinical psychologist. It’s hard making that first step. It is helping, I am learning to take care of my own emotions, even though the road seems long. Some of my decision to make the call is you, my friend. I read all your accomplishments and all you do to take care of yourself without giving up on those you care about. You are transparent and not ashamed. You are my champion from afar!
Bless you, Cindy! Thank you so much for this rich comment and for taking care of yourself. xo
I’m thankful you’ve found a way to continue your art. I’ve been dealing with a two year diagnosis of my husbands Parkinsons. Another neurologist thinks it’s some kind of tremor. Time will tell. Art is such a crucial part of my being. And getting away, even for a short time, is helpful. Hugs and prayers on your journey. Congratulations on your acceptance to the National Association of Women Artists. I just watched the YouTube of Katharine Cibulka’s Solange. Continue to take care…
Thank you Anne. And I sorry to learn of your husband’s Parkinson’s. I have found the PD Caregivers Support group on FB to be invaluable. Nobody gets it like those in the trenches.
A well deserved honor!
Thank you Ann!
You go girlfriend!