In 2012 my husband, Bob, was diagnosed with Amnesia and we were told it could become Dementia. Three years later he was diagnosed as having vascular dementia. However, after two weeks in hospital in 2018 with severe anxiety linked to the condition, we finally saw a dementia specialist who diagnosed Alzheimers. Nothing could prepare us as a family for the devastating news – and that there was no cure. To see this dynamic and clever man become so dependent and scared of day to day things was devastating. My life now revolves around caring for the man I have been with for over 40 years.
I met Bob whilst having a gap year working on Cleethorpes Pier before starting a degree at Hull University. I was only 17, but we got on so well and shared so many interests that we became inseparable. We married a year later. Bob was theatre manager on the pier and went on to pursue a career in tourism and leisure, and I put my degree on hold to support him in his anti-social hours and bringing up our two boys, Joseph and Edward.
Whilst they were babies I enrolled in the Open University and after six years managed to gain a BA in English, History and Cultural Studies. After a year I started teaching full time at a local primary school. Bob’s career grew and soon he was in charge of tourism and leisure for East Lindsey District Council in Lincolnshire. We met many stars of show business such as Norman Wisdom, Ken Dodd, Joe Pasquale, Lulu, and Barbara Windsor, who sadly also suffers from Alzheimers.
Bob worked hard and had a knack for securing TV appearances. He would follow up every bit of publicity he could, including swimming in the sea in January to prove how clean the water was after gaining a Blue Badge award.
He was managing a huge budget, a very successful manager and well-liked by his many staff. We had a great life. but so much has changed since his diagnosis.
Life isn’t easy but we do manage to share lots of fun and laughter. In sharing our story, I hope to cast a little awareness of what it’s like to be a carer for someone living with dementia.
A typical Sunday in our house.
Bob has taken to waking up very early. Today it was 4.00 am.
‘Hello ‘ he says. ‘ Are we getting up yet?’
‘It’s early, go back to sleep,’ I say. ‘I’m not at school today.’
Then the restlessness starts. We manage a few more hours then I give in, get him up, bathed, hair washed all clean set of clothes, wet shaved, pills, hair combed and all the other small things it takes to get him ready for the day. It’s exhausting and the day’s barely begun. He looks smart and well though, so it’s worth it.
We listen to the news whilst we share our morning coffee, having a discussion of the likelihood of which Tory will become the next prime minister. Bob has me howling as he has a complaint about them all.
Then it’s out for Sunday lunch at a friend’s house. Bob eats a small plateful, but I have to chop it up and feed him as he never manages more than a few spoonfuls himself. He’ll say he’s finished but I can usually get more down him as he forgets what he’s said.
When we get home another friend calls in for a glass of wine. He sits with Bob and they enjoy a beer for an hour. Bob ‘loves him’ because he knows him and feels safe. This gives me a break as I have real problems keeping Bob occupied. He wants to do something all the time, but his concentration is nil and so I’m not able to get on with as much as I’d like.
I put ‘Babe’ on the TV for Bob while I mow the grass. He enjoys children’s films as the story is not difficult to follow. I try to dodge the showers and just manage it before the heavens open. When it stops our friend helps me dig some plants in and put the heavy green bin out for dustbin men.
Our friend leaves and we settle down on the sofa, side by side, to watch footie for a bit. If it goes to penalties I might just be able to escape to do the pack ups and the organisation for work tomorrow.
Then out comes the doodle book with his nice new pencil crayons. He lasts fifteen minutes but I am cajoling him the whole time.
Getting Bob to bed is a huge undertaking as by 9.00 pm he is tired and irritable. I start by getting him in his pjs. He complains about getting changed as he wants to go to bed in his clothes. I have to manoeuvre his arms and legs as he can’t do it himself and his arms are stiff as he no longer knows what to do to get undressed.
Then the teeth.
‘Oh, not that!’ he says.
He hates the sound of the motor on the electric toothbrush and I have to brush his teeth as he would never do them.
Then the pills.
‘Not them’ he says.
Bob is on a cocktail of tablets: one for his memory, one for anxiety and several others. Then we go downstairs for a glass of ‘something lovely’ – part of the deal for co-operating in the getting ready for bed routine. Bed by 10.00 -10.30pm and Bob goes out like a light.
Whereas I am laid awake thinking; thinking about how my life has changed, how Bob must feel so bewildered, and how I’m going to have the strength to start it all again tomorrow.
