Conundrum of being a dementia carer – love vs reality

One of my closest friends, Sophie (Damn It Sophie) has been brave enough to write a guest blog piece that makes me realise how lucky I am, and how hard it is for many families who are affected by Dementia. You can read part two on her blog above. Thank you for your honest Soph #HonestMemories 


Sophie and Grandma


My Grandma has very bad dementia.  She lays in a bed in a care home all day, alternatively sleeping and asking when her long dead Mom and Dad will come to pick her up. Five years ago she was still my fierce and stubborn Grandma who worked in the Sheffield market rag trade for decades.  A beloved Mother and a Grandmother, she taught me the only cake recipe I will ever need (4oz each of flour, sugar, and butter/2 eggs) and was renowned for the New Years parties she hosted during her marriage.  Also for managing to shoot a rat on her farm with her eyes closed and screaming wildly.

It was her body that degraded first. Three hip replacements and a year long battle with MRSA in the 1990s, a weight problem and debilitating mobility issues that made her virtually bedbound.  Then, a few years ago, she began to lose the thread of conversations, ask the same questions again and again and fall asleep as she was talking.  She forgot that she didn’t really make dinner anymore, or do the cleaning, or in fact much of anything around the house due to her ailments.  She forgot everything her devoted partner was doing for her, claiming that she did everything and that no one ever gave her any help.

But none of us could tell her it seemed like she had Dementia or Alzheimer’s.  Not only did she not remember that she was forgetting things (obviously), but she has always had a stubborn temper that no one wanted to encounter and that only worsened with the illness.  She would say we were lying when we tried to get her to understand the issue or berate her partner when she was in hospital, telling him he didn’t care and never came to visit (he went everyday for weeks).  When we made the decision not to renew her driving license a few years ago (not telling her immediately in fear of the temper) she went crazy, despite the fact that she was in no mental or physical condition to drive and hadn’t driven her own car in nearly a decade.  There was no reasoning with her.

Eventually her partner could no longer look after her properly, even with carers coming in morning and night, and respite breaks.  He is older than her and while much fitter it was unfair for him to be the caregiver for her any longer.  He was loathe to let her go even though he knew the toll it was taking on him.  I suppose that is the major conundrum of being a dementia carer – love vs reality.

So we put her in a home, one of her biggest fears – although thankfully she doesn’t really recognise where she is these days.  And as family we all make the obligatory trips when we can, even though it is deeply upsetting to see a proud woman laid so low, unable to recognise us or have any kind of meaningful conversation.  We do it because we love her (or at least the person she used to be) and because of duty, for she was a wonderful caregiver through the years.  I despise this disease for taking her away from us and for making her forget all of the amazing things she’s done.  She was a champion ballroom dancer in her time!  And she got lost in New York City at night in the 90s in full ballroom dress and jewellery! And a Palestinian taxi driver took her home with him when she visited Israel to introduce her to his family, despite being at great risk from the authorities!

She lived a great life…I just wish it didn’t have to end like this.


If you haven’t seen it already, check out part two to their story here.

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