Dementia Carer Voices would like to welcome our latest Viewpoint blog post from Kate MacDonald (@k8macdonald), who is Personal Assistant to Professor Fiona McQueen, Nurse Director, NHS Ayrshire and Arran. It’s our privilege to share Kate and her gran’s story, entitled “Happily Confused?”
You ask someone, what the first thing they think of when they hear the word Dementia and most would probably say ‘memory loss’, this is correct of course, but scratch at the surface, take time to look a little closer and it’s the tip of the iceberg.
This is a snapshot of my experience of caring for my 82 year old Gran, before she went into residential care.
….born in Govan in the 1930s, worked in the Labour Exchange at Glasgow City Council, married, moved to the coast, became a mum, graduated and worked as a teacher for many years, moved to the Middle East, graduated again in her 60s, a trained counsellor, founder of a children’s Charity in the Middle East – a formidable woman.
A formidable woman
Gran now has Frontotemprel lobe Dementia and I am witnessing the steady decline of the formidable woman, who feared nothing and had always lived her life her way. This is the most challenging part so far for Gran, but also for Mum and I who have been on a roller coaster journey over the past 5 years.
At the moment we are hoping that Gran’s illness progresses from the mental torture she is currently in too….well….being “happily confused” as one of the nurses told Mum and I recently.
Can we ever be happily confused?
When I pick Gran up from her lovely care home, we negotiate the introductions to staff that I get every time, the “See that man in the chair, that’s Dr So-in-So, he was seemingly very well known”, the “how’s my face, have I got it on?”, the winter coat going on, even though it is warm outside, the hiding of the biscuits in her room, “because people steal things here”, the opening of the purse, the closing of the purse, the opening of the purse, the closing of the purse
….we finally arrive at the lift, I always forget the code to open the doors, I traipse back to the nurses office, lift doors open, I punch in the code to get out of the front door and…. daylight, fresh air, Gran inhales, her eyes adjust to the brightness.
“Where are we going?”
“It’s Dobbies Gran, is that ok?”
“Yes I don’t mind where we go, it’s just nice to be out and about….I’ve decided that when I leave the care home, I’m going to come back on a voluntary basis and join the staff team….at the end of the day, I’ve got my own life to be getting on with.”
“Where are we going?”
“Gran, we’re going to Dobbies”
“I fancy Dobbies, can we go?”
“Yes, Gran, of course”
HALT, STOP, WAIT A MINUTE, this is the easy stuff with Gran, the tea and cake outings, but it’s always just a thought away that Mr Dementia has stolen all of Gran’s short term memory and made a run for it.
I have illustrated below a typical week before full time care was a reality and shows how bad things got for Gran and the challenges I faced trying to cope with a lady who had (and still does) have zero insight into her illness;
loneliness / nightmares / anger / frustration / bitterness / a safe for meds / refusing to shower / £1200 a month phone bills / falls / lots of chocolate biscuits / social work visits / 4 carers a day / fluid refusal / “I want to die” / “leave me alone, I’m fine” / not getting out of bed / “I’m moving abroad and you can’t stop me / Memory Clinic appointments / befrienders / removal of driving license / losing money / tears / fall-outs / getting into a stranger’s car / arguments / more tears / feeling trapped
“Kate, I fancy going to that place with the goldfish and the tiffin…what’s it called”?
“It’s Dobbies Gran and that’s us just arriving”
“Happily confused?” by @k8macdonald
Originally shared at www.ayrshirehealth.wordpress.com/2014/09/03/happily-confused-by-k8macdonald/