The ongoing story of Mom’s dementia, from my recent trip to the US in August 2023.
Saturday was my first day to see Mom. When I came into the restaurant at Harmony — the assisted living facility that Mom has been living in — Mom smiled at me, but she didn’t say my name. She said, “What a nice surprise to see you.” Not exactly her usual response when I live 20 hours of plane flights away from her, and usually only see her once to twice a year.
The next day, I was waiting in her room for her when an aide brought her back from lunch. The aide asked, “And who is this?” My mom looked at me, confused, and asked, “What is our relationship?” I said, “Mom, I am your son Bryan. I live in Australia.” She looked confused and troubled.
Monday, Donna and I arrived together, and Mom beamed from her chair in the assisted living restaurant. “You’ve brought one of your handsome sons with you!” she said. Well, at least I’m in the family. And of course, handsome.
Tuesday, Mom looked different, and knew who I was. Donna even asked Mom, “Who is your visitor?” and Mom replied, “my son Bryan.” The rest of the trip, with one exception, Mom recognised me.
We knew this point would come, but that doesn’t make it any less brutal.
A year ago, I collected all of the printouts of the autobiographical stories that Mom has written, and put them into a binder, so we can read to her, from her own words, the moments of her life. I read to her a story about Dad, Mom, my sister, and a wolf — the punchline is my sister asking, “But Daddy, where are the three little pigs!?” Mom seemed really checked out and not really attentive. Then I read her the story of her flying to Fairbanks in order to give birth to my sister. She laughed at parts, smiled, even got a little emotional — she was following along and understood a lot of it. I know part of Mom is still with us — even though the evidence changes every day.
One afternoon I brought my laptop, and showed her photos of my house in Yamba, and then photos taken with friends over the last year. She brightened up and said, “Bryan, you’ve made a good life for yourself there.” Just that sentence, breaking through the fog of her confusion, touched me. Hi, Mom.
A year ago, we moved Mom from a room at Harmony at Falls Run in Independent Living to Assisted Living — all in the same building, but with Harmony now being responsible for medical care, medications, etc. We had been using a group called Comfort Keepers and had built a number of great relations with the people who worked there, who deeply care for Mom. But we needed more help on the medical side, so we moved Mom.
Our first two months in Assisted Living was a disaster. The care was unprofessional, uncaring, and Mom felt nine times in those two months, entirely from negligence of the care givers, who would often leave her walker far away from where they had seated her.
I escalated with the corporation which owns Harmony, and a change of management occurred, and we saw some progress, and met a number of new leaders who had a much more systematic approach and wanted to actually solve the problems. By then, it was too late, and Mom had lost the ability to walk on her own, mostly due to the staff not being willing to walk with Mom, and just pushing her around in her wheelchair because it was faster for them. I have an enormous amount of empathy for anyone who works in aged care — it is a thankless, brutal job, and I am not sure how anyone can do it long term. But there is a very clear difference between the people who care, and those who treat the residents like objects and not humans.
One day on this trip, a care giver at Harmony told me, “Your Mom really likes it here.” I told her that was interesting, because Mom had just been in a rehab facility (broken femur from crawling over the safety rails on the bed), and she seemed much happier because they did a great job keeping her clean, brushing her hair, keeping her smelling good, and brushing her own teeth. The aide at Harmony replied, “Your mom needs to learn to brush her own teeth.” I was stunned at the ignorance and the complete lack of care.
My sister had been talking about changing where Mom lives, and just that line alone helped me see in a single sentence the neglect and lack of human compassion that most of the workers had for my mom. My sister again was right: it was time for a change.
We visited the nursing home — the same facility where Mom had done her rehab recently, and it was night and day. The team were actively working with patients, getting them out of their rooms. You could find a team member easily to talk to — while on Sunday, it took me 50 minutes at Harmony to get anyone to Mom’s room.
A nursing home is not a place any of us want to be. But for where Mom is at, we deeply believe she will receive better care at the Falls Run Nursing Home than she did at Harmony.
My final day with Mom, I stopped by and read her four different stories from her own life. On some she was less engaged, but on a couple she laughed at the right parts and marvelled at others.
With tears forming in my eyes, I told Mom that she’d given me the gift of unconditional love, and that gift made me so much of who I am today. That she’d done so much for me and that the good parts of who I am today are a result of her example and her love. She held my hands and told me that I was giving her too much credit. I talked to her about studies around childhood development that show if you grow up in a world where you are in survival mode, you are likely to have anxiety your entire life. But if you grow up feeling safe and protected, then you may carry that with you the rest of your life. Even though anytime I stepped out of my internal childhood universe of daydreaming and fantasy, I never felt like I fit in, I always felt loved and protected.
Ninety percent of the time, Mom responds with a canned response:
“That’s interesting”, “That sounds fun”, “Oh my”, “I’ll consider that” — she responds based on the visual clues and body language and tone of voice, but isn’t really comprehending what you are saying. But this time Mom was really talking to me, talking with me. It was the only moment during my trip where I really felt Mom was there, with me, and it was the one gift I wanted more than anything.
I had said similar to Mom in the past, and I wanted her to hear it every time I saw her. I swallowed hard because I knew I would stumble over the trickier bit of what I wanted to say next. I’d said this next part as well before, but it feels alien to say it even though I believe it with my heart. I held Mom’s hand a little tighter.
“Mom, you have told me for years now that you are ready to ‘meet your maker.’ I want you to know that Stephen, Donna, and I are okay with that. We don’t like how much you are suffering and the quality of life that you have. And that if you want to go on, that you don’t need to stay here because of us.”
Mom looked at me, and the expression of comprehension had gone. “I’ll consider it,” she said flatly, as if I’d asked if she wanted to have tuna fish for dinner. I smiled and inside laughed at the cruelty of the disease. Only with a sense of humour can we survive this mess.
I told her how much I loved her, and that it was time for me to leave for my flight. Mom looked so sad, it nearly broke me. I gave her two last hugs and kissed her on the cheek. She squeezed me back and blew me a kiss as I waved to her one last time.
Thanks largely to the dogma of the Catholic Church and their influence, euthanasia is not legal except in Oregon in the US. While I don’t know if Mom would have been okay with being euthanised, it’s still sickening that people who want a compassionate ending are denied it. I am tired of the religious influence on our legal systems and how we justify suffering as the will of a non existent god.
My time here in Virginia was a jumble of pieces which don’t make a sensible puzzle. I’ve had some great bike rides. I’ve been able to help my sister and do a lot to prep for Mom’s move, I’ve had enough time to do a couple of board meetings, and enough alone time to process most of the stuff happening with my Mom.
We’ve tried to do everything we can to make Mom’s life as good as it can be, but it still doesn’t feel satisfying. I know the next time I fly back to see Mom, she might not recognise me at all. I need to accept the situation for what it is, and know that my main purpose in my family is supporting my sister, who is amazing, and deals with this every day and every week, instead of just dropping in like I do a couple of weeks each year.