Life through the eyes of a dementia carer

Tuesday 04 May 2021

From taps being left on, to putting dirty plates in the cupboard, to extreme events like “driving through a red light”… an islander has opened up about caring for her husband after his dementia diagnosis, and how she found hope and support thanks to a local charity.

Stacey Baxter, who is Fundraising and Engagement Coordinator at Dementia Jersey - Express’s chosen charity for 2021 - spoke to one of the charity’s clients about her experience…

Meet Lyn and Joe*, a happy couple married for many years, and leading a normal life until things started changing six years ago. Joe was an intelligent man in a demanding profession - very sharp and always on the ball - that’s why Lyn knew something wasn’t right, when changes started happening November 2014. 

A year later, Lyn felt fearful of the continued changes and so talked to friends and doctors - only to be told it was normal ageing – “I felt shut down, I know my husband, it wasn’t just ageing.”

“To an outsider it may seem everything is fine, but to someone living in the same household, I knew differently.” Lyn pushed harder, and was referred to the memory assessment service.

Joe undertook memory tests achieving 100% scores - a testament to his intelligence, but that made it difficult to understand what was happening. PET scans showed grey areas of mild cognitive impairment which can be driven by stress – but it was not, it was more. 

Changes progressed: Joe would start with one story but end with another; this is called confabulation. To others this was unnoticeable, but to a wife who experienced the story first-hand, she knew it wasn’t the right ending. 

Years of ad hoc testing and PET scans followed, providing nothing conclusive. Joe was continuing to achieve good test scores, but this was due to Joe’s ‘cognitive reserve’; a part of the brain which is almost like an ‘academic reserve petrol tank’ which you have the ability to draw on. Joe drew on this to cover up the issue, and which allowed the slower decline; but once that reserve started running low, they noticed it was a bigger issue. 

Joe was diagnosed with vascular dementia in early 2019.

To doctors nothing had changed, it was a diagnosis, but Lyn says, “it felt like a death sentence.” While experiencing a sense of relief from trusting her instincts, it was the awareness of what was to come that scared Lyn, knowing her life would change from that moment on. 

“I remember sitting down for lunch and bursting into tears, sobbing, telling my friends what happened; at that point I crashed. You are grieving the loss of a loved one, whilst thinking my newly decorated bathroom would need to be stripped back to have colourful handrails just to ensure it was safe.”

Lyn found herself walking into normal life thinking, “what happens now?”

She may have kept a brave face, but says she was struggling inside: “I remember thinking you should never assume someone is ok. Just because I look like I’m holding it together does not mean that I am. My days are spent bouncing from devastation to frustration.”

Following diagnosis, Joe’s condition progressed; test scores worsened, and activities became harder. From taps being left on causing flooding, to putting dirty plates in the cupboard, to extreme events like “driving through a red light when previously Joe was an excellent driver.” 

“Dignity started to decrease,” Lyn reflected.

The disease was taking over. Lyn remembers asking, “how are you?” to which he replied: “I feel much better now that we’ve arrived, it’s a really long flight to Japan isn’t it?” She didn’t know whether to laugh, cry or both. 

Mixed emotions continue from “feeling utterly devastated watching my intelligent husband struggle tying shoelaces, to the frustration and exhaustion of having to say something over and over again, plus tidying up the mess they make.” 

Joe can do very little for himself now, and whilst physically able, he cannot be left unattended, to the point he needs to be reminded to drink. Worries continue, not knowing what is next. Lyn explained it’s like “living with a two-year-old, except with a two-year-old you can just pick them up and do things with them - Joe is a fully grown, physically able man. I’m living with an ambiguous grief, grieving for the loss of a loved one, whilst caring for a grown-up toddler.”

If you are thinking, “what about help?”, there aren’t always enough caring staff, the activities may not always be appropriate, and it can be incredibly expensive. 

Lyn’s journey led to finding support through various means, including Dementia Jersey.

Taking the first step to getting support was difficult and emotional, but important for Lyn to know others in her situation, as up until that point she says she felt, “alone in the world.”

Lyn came to our charity one year ago, and whilst it was hard to say, “my husband has Dementia”, she would now say to anyone else in her position: “Do it!”

Since joining, Lyn has made friendships, had support, found a place where she feels confident to go to when needing help, and most importantly found respite, where she can relax through our activities. 

Dementia is irreversible, and incurable, all we can do is make efforts to try and slow down progression: proving the importance of having resources available to help those affected by dementia, and to prevent people like Lyn feeling isolated. 

Help us remove the stigma, help us to encourage others to take the first step to getting help. 

We are here to help.

*Names changed to protect identities.

This article first appeared in Connect Magazine, which you can read in full HERE.