Being Kind to People With Dementia
My 91 year old dad has been having memory issues for a few years. It happens to all of us, we forget appointments, we forget to do the dishes, we forget minor things. Dad also has macular degeneration which robbed him of one of his greatest joys - reading. This was a real tragedy for someone so incredibly intelligent with a huge appetite for knowledge. Dad had very little use for TV even when he could see it; he listened to the radio instead. I called him once a week at a specific time, otherwise he would not plug in the phone. (He was so pleased the day he got a phone with a plug-in jack back in the 1970’s; he called it “The Big City Hook-up”.)
Dad lives on the Sunshine Coast, a rural area in a rain forest. He’s been here permanently since 1973.
Walkability is zero unless you can walk miles at a time, having a vision issue reduces your world dramatically. Dad could no longer walk around the property, there were trees and steep drop offs into the bush all around.
(photo by Kelly Allard - This is NOT a pic of his property)
I ‘m using initials to keep peoples names private, the initial may or may not be part of their actual name.
When he could no longer drive, Dad hired a neighbour (B) as a helper. B was great and helped Dad until 2022 when they could do it no more. (That’s a whole other story but I digress.) I arranged for someone to deliver his groceries which I ordered from Alberta each week. At first it was M until A took over grocery delivery in mid 2024.
The Crisis
November 2024, A noticed Dad seemed off when he delivered the groceries so he went to check on Dad the next day. Dad had fallen and could not get up. A called 911; the ambulance attendants only needed 1-½ hours to convince the (stubborn) old man to go with them.
I found out about it 5 days later when the hospital called me. Dad had refused to give them my name, he didn’t want me to be bothered. The hospital called around to social service agencies to try to find out who his family was and finally got an answer. I had been in contact with all of them over the past few years so they were successful in tracking me down.
March 2025
I’m visiting with Dad every day. His brain is not functioning at the very high level it once did but Dad’s still there. I’ve adjusted the way I speak to him.
We used to have a joke when I called, he would ask “Who’s this?!” I would respond “Fred!”. He’d chuckle and ask “How ya doin’?” and we’d have a good chat.
One time when I responded with “Fred!” Dad said, “No joking, who is this?” I said “Kelly”.
I no longer use that joke. I could have tried to remind him (hey, don’t you remember this is our joke?) but that would be cruel.
When I came out here in November 2024, one of the hospital staff members tried to get him to remember her name. “I already told you my name 3 times, I’m not going to tell you again.”
This is the wrong thing to say.
It’s not like he’s not trying to remember, he literally cannot. That part of his brain that held short-term memory is no longer functioning. It would be like telling a blind man he can see if he just tries hard enough.
That’s not how it works.
Dad knows there is something with his memory. It disturbs him deeply and it scares him. Dad can communicate in the moment, his intelligence and his wit is still there. He still has much to offer.
Dad Is Still There
Dad might forget what I told him yesterday or even earlier in the conversation but he’s still there. I might have to tell him the same thing over and over, knowing that he will not retain the memory. Instead I try to focus on the past; I ask him questions. It might take him a few seconds to recall it but then it comes clear as day. I am learning things about my father that I never knew.
Here’s a great example.
Years ago, a fisherman with a young family lost his home to a fire. My dad heard about it and arranged for a new home to be built at no cost. My dad arranged for tradespeople to donate their labour, he arranged for building supplies to be donated and within a short amount of time the community came together and built a new home.
Dad could also be seen as belligerent (in case you were wondering where I got it from), he stood up for what was right even if it was not the popular opinion. He knew that the majority was not always right. A person can be smart; people can be stupid (especially in large groups). Dad was a leader, not a follower, he did not always take the easy way out.
Dad could be an asshole - he liked to bait people to get them to react. He could be downright mean, so mean that I stopped talking to him for 7-8 years. Once I restored contact, I refused to play his games. I would hang up the phone or walk away.
One time we had a big argument and I left for the rest of the day. I went back the next morning and brought him coffee like usual. Dad was very grateful, he thought I was not coming back ever.
I don’t recall if I got an apology or not, that’s not a dealbreaker for me. I settled for that behaviour not happening again.
I’ve been trying to get help for Dad for years. Dad’s vision got worse and worse, he was malnourished because he had pain when he ate but he refused to see a doctor. He refused to leave his property so was effectively housebound. His mobility got worse and his housekeeping went out the window. I won’t go into details but it was not fit for a dog to live in. This was a change from the man I once knew - his place was never very tidy but it was not dirty.
I arranged to have people from local social service agencies come and assess him because I knew he needed more care but they would tell me, he’s fine, he can make his own decisions. They knew he had issues with short term memory but it was not a concern. If he wanted to live in filth, he could. If he wanted to refuse help, he could.
I have now just realized that all of the assessments took place in the morning or early afternoon. Meanwhile, the distressing behaviours were happening more often in the late afternoon or evening. Visits with Dad around those times were challenging and I often left in tears from the arguments and frustration. This explains why all the assessments deemed him to be fine.
The first visit this trip was great, the second one was not. He was sundowning the second time and became cantankerous and rude. I adjusted my visiting times to earlier in the day and the last few visits were delightful - Dad was entertaining and was even serenading the staff with his ukulele. It raised memories of my childhood when Dad would play music and sing, sometimes by himself, sometimes with a neighbourhood band that would play at parties at our house. Dad played ukulele, piano, accordion, guitar and a little bit of trumpet.
The Medicine Wheel
I learned something from the Miywasin Friendship Centre recently and it has struck a chord in me.
The Medicine Wheel has 4 sections.
Image from an article written by Francis Whiskeyjack.
(Everyone has a different interpretation of the Medicine Wheel, I used this one because it shows two life cycles intersecting at the top.)
The lifecycle starts at the Northeast section with birth and childhood. A person is not considered to be an adult until they reach the age of 25 (having raised 4 children and having 7 bonus children, I can attest to this).
The Southeast section is adulthood to age 50.
The Southwest section is the grandparent stage to age 75.
The Northwest section is for the elders.
The circle has returned to the top; the top is the closest to the Creator. Like our Children, the Elders require more care. Elders still have valuable wisdom to impart.
Final Thoughts
It seems like it does not matter what age you are; you’re still the child, they’re still the parent and you act accordingly. I had to change my way of thinking, that I was a grown woman and did not have to take his BS anymore. Even now as a grandmother, I struggle with that relationship. All of a sudden, I am a young girl again and he is the wise old dad.
The day will come when Dad will not know who I am but for now, he is still there. Dad might not be able to make new memories but I can.
We have the gift of time.
It is my job to be as kind as I can while he undergoes this journey. So I do not tell Dad I already told him something and that he already forgot. To paraphrase a quote from Dusk to Dawn
“I might be a bitch but I’m not a fucking bitch.”
Image from a copy of the Harbour Spiel; “The Independent Voice of Pender Harbour and Egmont since 1990”.
Dad is centre bottom. The totem pole was the first one Dad carved.
Dad wanted me to keep his dementia secret but the news is already out there in his small community. I’m not going to mention his name or the names of his neighbours but some of them are on FB. Like many small communities across Canada, gossip is rampant.
