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A unique kind of grief

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My father was diagnosed with Alzheimer’s disease when I was 10, so I have always had some awareness of the condition. From an early age I was aware that he wouldn’t be around as I grew up and as time passed, the condition worsened and things changed in the family but I never remember a single point when grief started to set in. I didn’t, and to an extent still don’t, feel entitled to a full grieving process, because in complete honesty I have very limited memories of my dad as the person he was before his disease. The process of losing him for my family was extremely drawn out; little by little chipping away at the person we knew so insidiously that it went unnoticed day to day apart from the occasional reminder (for example one day my dad filling up the car with the wrong fuel) of what was happening and worse its irreversibility.

As time went my dad became a new person, dependent and helpless and I came to dread going to see him when he was moved into a nursing home in case he had forgotten me. But all through it, I never noticed a single point in time when I lost my father, even when he died in my first year of university, in truth it didn’t feel like much had changed. To anyone who asked I said it had been a long time coming and there certainly wasn’t any shock to it.

I’m not sure if it’s a good thing or a bad thing that dementia takes a person away so slowly. I’ve thought about it a lot and I have to admit I don’t know how I’d cope with what I’ve dubbed “real grief” if I were to lose someone I loved suddenly and unexpectedly. Because the disease progressed for over 8 years, I was ready for what I always knew would be the outcome. As my understanding of the condition deepened, I was less and less excited about news articles of potential cures as I knew the damage was permanent; the physical structure of the brain that allows us to make memories was damaged. Dementia isn’t something that removes a chunk of memory then goes away again like some kind of anterograde amnesia. It not only kills but destroys, wiping out most of what makes someone you love the person they are, with currently no hope of reversal and little of slowing it down. Therefore, mercifully I was ready for adult life without a father figure. But on the other hand, that is a very long time to have to watch dementia unfold. Being a primary relative, there was no way to escape from it. Also, the impact it has on the individual themselves is painfully clear; to be so aware of what was happening must have been terrifying, especially given my dad worked with people who suffered from degenerative diseases.

I think I will always be slightly confused as to how to define my experience with the disease, one of the most difficult questions I’ve ever been asked was “What is it like to lose a parent?” and really I have no idea how to describe it and failed miserably to do so when asked. The question was possibly made more difficult by the fact that I couldn’t say for sure when I actually lost my parent, and it sounds harsh but hopefully someone will understand when I say I didn’t notice. It is so gradual and so silent that one day you realise that the person is gone and you can’t identify the last time you spoke to them as the person you remember them being, yet some recognisable traits remain. It doesn’t just change their memory of you, but yours of them in the subtlest of ways.

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Farai Pfende

Becoming a dementia friendly organisation is no longer about satisfying some altruistic need or Community Social Responsibility policy. It is a matter of complying with equality legislation.

Anne de Gruchy

The situation with my lovely dad is becoming untenable. ‘Becoming’ is probably rather too tame a word for it – things have changed rapidly over the last nine months and I feel like we are dealing with a runaway steam train (dad would love that analogy) about to hit the buffers.

Neil Chadborn

I think people ‘get’ Dementia-Friends or even Dementia-Champions and associated campaigns and events. Dementia-Friendly Communities (or cities) I think may require a bit more work to convey to many people.