At a recent two day dementia workshop organised jointly by Dementia Oxfordshire and University of Warwick, a number of carers were asked if they could spend a few minutes describing their experience of caring for someone with dementia.
One carer, Debbie, decided to write a letter about caring for her mum and read it to the event audience. We now have her permission to share it with you plus a song she wrote about her experience.
Good afternoon, everyone.
I’m Debbie and have been asked to speak from my viewpoint as a carer to my mum, Jill, who had mixed dementia from the age of 76 to 90.
In the fourteen years of caring, I saw her go from a beautiful, vivacious, kind, clever, well-read, polite but outspoken lady who was a great cook, fabulous seamstress and amazing knitter, to a bedbound soul who watched TV all day and night (when she wouldn’t allow me to switch it off as she was in the middle of a very interesting programme at 2am!).
Mum never lost her sense of humour or her ability to do crossword puzzles and answer quiz questions on TV shows. She was prone to commenting on the hideous dress the weather girl was wearing or she would remark loudly how she didn’t think much of the newsreader’s hairstyle today!
She adored Doc Martin, Inspector Morse, Columbo, Heartbeat, and Agatha Christie’s Poirot. I can’t tell you how many times she rewatched the same episodes and yet each time they were new to her.
She was a huge fan of Ben Fogle, so it was always a highlight if he was on. I would peruse the TV magazine with her and announce,
“Ben’s on tonight mum!”
“Ooo yes, we love him, don’t we?”
It’s true we both loved Ben. Then I would ask her what she fancied for her lunch and she would always say,
“Oh, I don’t know.”
“Get me something exotic.”
I’d cycle out and buy some lunch, cook it, present it on a tray, sit her up in bed, pop a cloth around her to catch the spills. She’d have a few mouthfuls and announce,
“I’m not really hungry. I don’t have much of an appetite. You don’t when you are lying around all day.”
I’d try to encourage her to eat a bit more, but she would cast it aside.
Two minutes later.
“What we got for pudding, then?” mum would ask. “Something nice?” she would say with a grin and then, “Get me something exotic!”
I’d go back downstairs and bring up the cream cakes. This was the lady that two minutes earlier had no appetite, yet she would polish off 2 or 3 cream cakes if I was silly enough to leave them within her reach. Many a time I’d go back downstairs to make us a cuppa and come back to enjoy my cake, which had miraculously disappeared!
I think dementia causes the sufferer to crave lots of sweet things.
It also causes the carer to go without!
Before mum was bedbound and when she could still stagger about, she would spend her day pottering in and out of her kitchen. Each time she would eat a jam tart until a pack of six was simply diminished to 6 silver foil cases abandoned on the work surface.
When I’d arrive and say,
“Where have they all gone?”
She was adamant that it wasn’t her that had eaten them.
It was funny how before dementia struck her you wouldn’t hear her swear, yet once she had it, if she or anyone else was upset about anything she would simply say,
“Oh, tell them to f off then.”
She used the f word almost with glee!
Her other catchphrase was,
“Well, does it matter?”
When we had to take her to the memory clinic in Greenwich c. 2015, the professional lady sat opposite her and said,
“Right, well you have dementia.”
“Who says I have?”
“Well, you have, as the tests prove it.”
“Don’t be ridiculous, that’s rubbish, I’m normal!”
The lady was a bit taken aback at mum’s reaction and so she said,
“Oh well, if I ever get it, I want to be like you, as you’re not at all bothered about it.”
“That’s because I haven’t got it.”
(She really believed she hadn’t and I was quite proud and amused at her attitude.)
Anyway, the lady obviously had to do her job and ploughed on,
“Is it ok if I ask you a few questions then?”
“I suppose so.”
“Do you know where you are?”
“Yes, and which floor are we on?”
“Well, does it matter?”
Mum rolled her eyes at me.
“Well, I guess not,” answered the lady.
My mum always put her point across very well.
I asked the professional quietly what was the next step and she said nothing now, you are on your own, there’s nothing more we can do to help. I was staggered as I thought I was going to get some helpful advice. I felt upset, angry, and abandoned. However, we went home and continued with humour and love, getting us through the years.
Mum never knew she had dementia, which could be a hindrance if she was in hospital without me there, as everyone assumed she didn’t have it and would address her as if her memory was fine. This led to pills not being taken and incorrect information about her medical history being given.
The other thing that always amused me was when I asked her if she needed any shopping. There was the standard reply from her basic shopping list of old.
“Milk, butter, cooking fat, lard, flour, sugar, cheese, eggs, and bacon.”
It never changed except to add on,
…”Oh, and something exotic!”
Caring for someone with dementia can be very wearing, sometimes sad, as the person you once knew is buried underneath a new and different personality.
Sometimes it is infuriating when they are adamant they haven’t moved something and then you find it in an unusual place.
But in general, I have found humour, love and kindness were the way to get through the days.
I have written a song in memory of my mum, Jill, and the journey we had together where our roles reversed and I had to look after her as she looked after me when I was a child.
I find writing poetry and music is a therapy for me to express how I feel.
I wrote the lyrics and then commissioned David Luke to write the music and perform it.
You can hear an audio recording of Debbie’s song ‘Hold On’ (lyrics by Debbie Reynoldson/music and performed by David Luke©) at the link below.
Thank you for listening.