Dementia Post #2 - Dementia Dad
Sechelt Hospital, Sechelt BC - photo by Kelly Allard
It’s been over 4 months since my last post about my 91 year old dad with dementia.
I’m out on the BC coast again to visit him and help take care of his affairs.
Dad is in the hospital waiting for a bed in a long term care (LTC) facility. He has been in hospital since November. He was being treated medically but was moved to extended care in February.
The wait for a LTC bed could be up to a year
Dementia Dad
I don't say that disparagingly but as an explanation of how our relationship has had to change. Parents start out as being the ones to care for their children. Sometimes, at some point that relationship reverses.
I’ve always looked up to Dad, he was often the most intelligent person in the room. He was a voracious reader, educating himself on a wide variety of subjects. (He no longer reads, thanks to macular degeneration. It’s a cruel thing to lose one’s sight when reading brings such happiness. The very thought of not being able to read fills me with dread.) Dad had plenty of knowledge that I lacked as well as a healthy dose of common sense. What I most admired, and still admire, is his sense of humour. (Just in case you were wondering where I got my warped sense of humour from.)
Now Dad struggles to remember what happened yesterday. He knows there is something wrong, he says he’s losing it. I can see the apprehension in his eyes as he contemplates what is happening to his brain. His body has betrayed him but he fears the loss of his brain function more. The loss of control frightens him.
Dad is better in the mornings, he has many more lucid moments. In one of our conversations, he asked if I had been there the day before. I said, yes, I was there the day before and the day before that.
He asked me, “Why the fuck are you here?”
Loveable Lyle
It was not meant rudely, he really wanted to know.
Dad went on to say, “I didn't remember you were here yesterday, tomorrow I probably won't remember you were here today. What’s the point, why the fuck are you here?”
I responded
“I’m here to bring you joy, at least in the short term.”
Dad thought about this for a moment, chuckled and said “Yes, yes you do!”
He was very grateful I was there even if he would forget about it. He was happy in the moment and that was enough for us both.
Dad wonders what is the point of having all of these people looking after him, he says there is nothing anyone can do to make anything better.
He’s right.
His vision will not return, macular degeneration is unforgiving. He cannot learn braille because his short term memory is not functioning. So much for reading. He cannot walk so going on a hike is not an option. Ingesting food causes him pain so a big feast is a waste of effort. It’s very possible he has a malignancy but at his age treatment would just cause unnecessary suffering. There’s no point in testing unless it would change the course of treatment.
What can I bring to a man who cannot enjoy many of life’s pleasures?
Dad enjoys a good coffee. Across the street from the hospital is a fast food place that makes the best coffee (sorry Timmie’s fans, that’s not it).
I stop there every morning, get him a medium coffee with 2 cream and 4 sugar and 3 of the sweet little “pop” thingys. The fast food worker laughs at the amount of sugar and says something about me needing to be sweeter. I tell him “It's for my 91 year old dad and he gets to have as much sugar as he wants!” We both chuckle and I head for the hospital.
I drive across the busy highway with the coffee and goodies, find a parking spot and head up to his room. Sometimes Dad is sleeping but I wake him up; I know he does not want to miss my visit. He is not sleeping because he’s tired, he sleeps to pass the time; he has no roommates. He craves companionship; the staff and volunteer give him as much time as they can afford.
I watch his face light up when I tell him I brought him coffee. He has a hard time manipulating the coffee cup and prefers to drink it with a straw. I put a straw through the lid; he drinks the coffee with joy.
I am reminded of how my children struggled to learn to drink from a cup and the many spills. Kids don’t care if they make a mess but Dad does. Using a straw enables him to enjoy his coffee without the fear of making a mess and allows him to retain his dignity.
The staff has provided him with a travel mug labelled with his name -
Loveable Lyle
We chat about various things, mostly things that happened long past as these are the memories that last. Various staff come in and out over the next few hours, they are always cheerful. Dad unleashes his considerable charm. Dad asks for his pain meds; the nurse brings it. He says to her, sing with me! (to the tune of “It’s Howdy Doody Time)
“ It’s hydromorphone time, it’s hydromorphone time…!”
As the hours pass, I can see Dad starting to struggle with his thoughts again, he starts to fidget in a certain way. Dementia Dad is re-emerging; I know it is time to wrap up the visit. The later the day gets, the more his capacity deteriorates. In the past when I did not understand this, we had some real arguments which left him frustrated and me in tears. One time after I left in anger, he thought I was never coming back. I want no repeat of that.
As I leave the Sunshine Coast, I ponder on what my dad said.
“This may be the last time you see me.”
He’s right. I might get hit by a car tomorrow. The subject of one of my favourite Doctor Who episodes is “Every Christmas is Last Christmas". People get together on holidays because it may be the last time. Dad might not be making new memories but I am. Any chance to make new memories is a bonus.
I’m not sure when I will see him again, if ever. While death comes for us all, it is not imminent for him.
In the meantime, I am trying to make the best of the time we have left. I am learning more things about my dad that I never knew.
I never knew that he took 3 languages in high school - Latin (many students did back then), Spanish and German.
I never knew that he took the tram to get to school - from Marpole to New Westminster - at that time the tram went all the way to Chilliwack.
I never knew he sometimes played music with Dal Richards at the Hotel Vancouver. (Dad played in a band on weekends, playing at house parties, often at our own home). During the week he was ran his own business selling heavy equipment. Bdeofre that he was a bush pilot who flew into logging camps to see them equipment.
The people at the hospital are learning more about him too. One was admiring my thunderbird tattoo on my shoulder (I rarely wear sleeveless tops).
I told her it represented the first totem pole my dad ever carved.
