I am posting this very personal painting because I know that there are so very many people trying to come to terms with losing a parent to dementia. You are not alone.
While your loved one is alive, you are hesitant to talk to anyone about it. It’s embarrassing to your parent/loved one, and you don’t want to be a whiner. You also feel guilt for the feelings of being shackled to this person. Life seems to be passing you by. I repeat, you are not alone.
It has been two years now, since my mother’s passing in 2012. Having quickly removed her personal belongings from the nursing home, I dispersed them among my sister, myself and some local charities. The rest I boxed up after the funeral and settling her financial affairs.
Feelings were still too raw, and I put those last boxes and files aside while I went on with my life.
But recently, while cleaning out some files in my studio, I came upon a reminder of her suffering – little notes that she wrote while in her confusing world of dementia. She obviously used things and moved things around in her own apartment, and because she was forgetting so much, her mind made up stories about other people intruding into her sanctuary. Reason decreases, and imagination increases dramatically, especially where paranoia takes root.
She told me about the people who insinuated themselves into her home to eat her food, steal small items and move things around – even rearranging her drawers, cupboards and purse. At the worst stages, she imagined that these folks had moved into the apartment above her, coming down to her kitchen for breakfast.
At times, “those people” brought their children along with them, allowing the children to scratch her piano bench, pick off the leaves of her floral arrangements, and cut the edges of doilies. Mom claimed to have even seen these children in her home. She also insisted that a man used a rope and harness to climb her balcony at night, sit in her livingroom and listen to her radio.
The notes were addressed to these “visitors”, calling them “destroyer”, “thieves” and she told them she couldn’t afford to feed them, and that they should “get a job!”
I had collected about a dozen of these notes when emptying her apartment for the move to the care home. I knew that I needed to do something with these notes. Throwing them away seemed to not acknowledge her distress, so I decided to work them into a painting about dementia, so I could put myself into her world and make an attempt to understand what she had felt.
I found a photo that I had taken of her in her favourite fish & chip restaurant, shortly before her passing, and sketched the face on the canvas in paint. I usually begin a painting with primary colours, mix them and add others as I go along.
My mother lived in fear. What is it like living in constant fear? Where one’s imagination goes wild, and everyone is “looking at you” and judging you? Everyone is thinking you are crazy.
My hands shook and I started to weep as I tore the edges from all of these notes and made them into smaller pieces to add to the painting.
Using regular gel medium, I added these notes to the canvas. I “helped” it dry faster with a hair dryer.
While living with the experience of helping and caring for my Mom, I had also been widowed. I was dealing with desperate feelings of my own, and my mother was in her helpless little world, immersed in neediness and unable to help me. This brought on depression and guilt for wanting her to console me.
Fortunately, at the time I was working in the office of our church, where I received much prayer and counselling support. To wade through my grief and loss, I accepted help from a loving network of family and friends.
With these paintings, I am studying the face of Mom, seeing every wrinkle and reflection as an insight into what she was feeling at the time. I missed being able to fully understand this as I was living the experience. Every stroke of the brush seems to ease, to release – something.
I can never hope to really understand her anxiety and desperation, but somehow it feels good to make use of those pesky little notes that had been taking up space in my files. They are now filed away permanently – in a place of reminder that we need to show a bit more patience and love to those living in the prison of their anxieties.
As each phase of the painting was created, I posted the progress on my personal Facebook page. It was done on impulse, and opened myself up to a risk, but I’m glad that I did it. Several people commented with encouragement and appreciation on the process.
On the very first introductory post, my artist-friend June commented about my intent to create the painting. She said, “Go deep and it will paint itself.”
I did and it did.
This painting will be on view at Art Expo in Winnipeg, Oct. 24-26 at Assiniboia Downs.
Another blog, Study of Dementia, portrait of Helen…
7 thoughts on “Journey Through Dementia”
Currently going through this with my mom. It\’s heartbreaking. Thank Faye…
Thank you for your courage to go deep and share. I remember when my grandmother was so afraid and suspicious. You are sure to touch many people with this art.
Faye, thanks for being bold and posting this amazing personal journey with your mom. We are living this journey for some time with my mom and can relate. It is heartbreaking at times, the feeling of guilt that it is a burden on us to make the effort to visit and yet get very little to nothing in return in the form of communication not having a sense that we are able to make an emotional connection. As I study this painting, at time I can see my mom as well. Thanks for reflection …
I wrote this when my Mom was going through dementia, but it is really her words – I just collated them…
Remember when I was the mother and you were the child? I used to dress you and pull your socks up. I used to do your laundry and change your sheets, at least I think so, but I’m not sure…And now – you take care of me and I wonder what I did to be so lucky or what you did wrong so that you have to pay this penance….
Remember when I was a smart person. I think I left my brain behind when I moved here. Why am I not normal? Why do people look at me so strangely? What can I do to make this better?
Remember when I could remember… can you tell me about your Dad? Do you remember very much about him? Can you tell me because I forget? Growing old isn’t for sissies. My forgetter is better than my rememberer. Was it ever any different?
Remember when life made sense. I could tell the time and knew if it was day or night and now I can’t tell and wake up when everyone else is sleeping and stick my head out the door so often to see if anyone else is up and around. I arrive late for meals and people think I’m crazy.
Remember when I was independent? And now I count on you for everything and feel so guilty for burdening you and being so lazy when I should take care of myself. Have I told you today that I love you? I love you desperately. What would I do without you?
Remember when life wasn’t such a puzzle? There are so many pieces and I can’t figure out how to put them together. Maybe it’s time for me to move on.
Remember when I was the mother and you were the child? You are my mother now….
Thank you for gifting me with these words, Bev!! Faye
Beautiful art, thank you.
Living this with mum now.
Feel so alone/angry/guilty/useless, desperately wanting her to be at peace, but also know that once she is, I truly am alone.
I loved your painting, it has so much meaning as my dad was diagnosed with Dementia just recently. There is so much emotion and feeling.
I am not alone
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