This week is Dementia Awareness Week over here in the UK, so I want to talk a bit about my grandma.
I read once, in a book discussing witchcraft practices, that it often skips a generation, like a grandmother teaching a granddaughter how to make crafts. When I think of my grandma growing up, that’s how I think of her. Not as a witch (I think she would have had an aneurysm if anyone had called her a witch, although she happily helped me with making broomsticks and witches’ hats during my ‘Worst Witch’ phase), but teaching me how to knit and sew and plait, and make cards and bookmarks with stickers and fine-liners. She was active in the WI as well, doing much the same thing in her community. But when my grandpa died, it was like a switch flipped. I remember her saying ‘Losing your life partner is a very different kind of loss.’
She wasn’t wrong. The initial depression passed, sort of, but the agoraphobia and anxiety didn’t. Then she started forgetting where things were, and when things were, and having conversations twice. She was diagnosed with dementia – Alzheimer’s – about two years ago now. The last time we met, she didn’t recognise me until I took my hat off. That was last Christmas. I doubt she’d recognise me at all now.
It’s sad, in some ways. She, who was once so independent, who used to bodily turf Grandpa out of the kitchen so she could bake or cook, who had no issues teaching me some respect for my elders, is now almost totally dependent on carers and nurses. She, who could talk for hours about her family, and what it was like when she and grandpa were first courting, now has trouble remembering what was said five minutes ago. But in other ways, she’s very lucky. Dementia itself is insidious by nature – cognitive changes which occur suddenly and devastatingly tend to be result of stroke or traumatic brain injury. Grandma never noticed the decline, or never cared enough to point it out. A report released earlier this week by the Alzheimer’s Society stated that 48% of people with dementia said they feared becoming a burden, and I think that being aware of the loss of memory and identity that comes with most forms of dementia is possibly worse than simply having the disease itself. But she’s happy where she is, and that’s the important bit. As long as she’s happy, I can’t feel sad for her. I feel worse for my dad and my auntie Helen, who are shouldering the majority of the administrative burden and who, unlike grandma, are more than aware of the decline.
It’s not an isolated story, either. I used to do a lot of phone work for a charity for the elderly, and the number of people phoning looking for advice regarding their parent who had just been diagnosed with dementia, or a person with the early stage of dementia themselves, was astounding. And this is without the Tories’ latest social care policy announcement, which could see many people robbed of their assets to pay for their social care after they die; their new means test places people with assets of over £100,000 on the ‘rich’ end of the spectrum – well, okay, but included in this means test is the value of their home, which, unless they’re living in a council flat, is highly likely to be over £100,000. Considering it was much easier for a lot of people to buy their own homes back in the 50s, this means that, simply for having social care needs, a pensioner with dementia and their families could lose everything. They’re terming this ‘the Dementia Tax,’ and it’s clear why; those living with chronic and debilitating conditions which severely impact their ability to live day-to-day, like dementia, are those likely to be hit hardest by this. Rightly so, there are many calling this both ‘grossly unfair’ and ‘electoral suicide’, among some less savoury words – it strikes some of, if not the most, vulnerable people in society. Yes, in a lot of ways, my grandma is very fortunate; she has savings put aside for this scenario, and she has family to help her out. With any luck, she’s set to be happy where she is until the end of her days.
On a more positive note, I’m running 10km next Sunday in Manchester, in aid of the Alzheimer’s Society, who commissioned the report cited above (the whole thing is well worth a read) and who aim to support those living with dementia and their families, both at home and in the community. My JustGiving page is linked below, but don’t feel obliged to donate. Just, maybe have a think about what you’re voting for, before you cast your ballot – in the UK or elsewhere.
Stay awesome, everyone.