The Dementia Taboo

Last year I had a rare night out catching up with some former colleagues over a drink and a bite to eat. Whilst it was great to see them I felt for the main part that they were tiptoeing around me and wondered whether I had a neon tattoo on my head emblazoned with the words “fragile; dementia carer please handle with care”. One of the husbands of the other girls was in remission from cancer and they all expressed concern over his recovery and yet in much the same way as Voldemort is referred to in the famous Harry Potter novels as “he who must not be named” dementia in many social situations becomes the elephant in the room. Now I’m not blaming my friends as I know it’s a difficult subject to broach and frankly some of the behaviours of many dementia sufferers scare the bejesus out of most of us but here’s the thing; it currently effects 850,000 people in the UK alone and by 2025 it will be over a million so chances are everybody at some point will know someone struggling with dementia.

Make no mistake Alzheimer’s is a killer and a destructive force in the lives of many, in much the same way as Motor Neurone, Parkinson’s, Cancer and any other progressive illness. There is no get out of jail card once you have been diagnosed and there is no recovery for this marauding killer that steals your loved ones right in front of you, piece by heartbreaking piece. One of the most bittersweet moments of my struggle was that I did not travel the old fella’s dementia journey alone for my bestie Barbs, was also fighting her own battle with her father who was also diagnosed last year. We’ve laughed & cried together, vented, raged against the injustice we have suffered at the hands of the social care system and shared advice in navigating the treacherous waters of Alzheimer’s but both of us have also sadly discovered that many of our other friends not knowing what to say to us have ended up saying nothing at all. Frankly, are we any less worthy of compassion simply because our loved ones no longer have the mental capacity that they used to. Is it any wonder that so many dementia carers feel isolated and alone?

So can I ask you to do just one thing for me today for all the families lacing up their boots to face another day of battle in their war against dementia; ask them how they are, drop them an email, write them a card, give them a call, offer to meet them for coffee or pop over to their house with a bottle of wine. Granted, Alzheimer’s has some appalling symptoms and causes sufferers to do fairly uncharacteristic things but I promise you, it’s not infectious and you can’t catch it. So go on be a good friend in the life of a dementia carer today after all what’s stopping you?

My wish for you is that you continue to astonish a mean world with your kindness #grandfather #grandad

My wish for you is that you continue to astonish a mean world with your kindness
#grandfather #grandad

The Long Road Home

If there’s one thing that I’ve learned over the past six months people will carelessly break promises and at a time when you need them the most, callously let you down.  Maybe we’ve lived in a cosseted world where my Dad has been our family’s moral compass always leading by example and providing help where he can. So it has been an education for me that neighbours and those we have long considered family friends have fallen by the wayside apart from when they call to enquire what we’ll be doing with his lawnmower, power tools or car.

I’ve discovered that the care the elderly and infirmed receive is a direct reflection of how deep their pockets are and in many cases woefully inadequate or just plain sub-standard. There is no instruction booklet on navigating the stormy waters of the social care system and you better grasp the jargon pretty quickly because not doing so will cost you dear. Having been cut adrift to find my Dad a residential placement we had a crash course on just how difficult this road can be for novices. This journey has been a revelation with moments of sheer despair, frustration, overwhelming hopelessness and countless sleepless nights. We have met less compassionate souls that truly have no business working within sectors where they encounter traumatized families and occasionally individuals that have been like bottled sunshine on a very dark day have crossed our paths.

What advice would I give those forced into a heart breaking journey of their own? I would tell them to use every resource at their disposal and then some. To fight even on the days when you feel you have nothing left and to never give up. We were made to feel that we were “difficult & problematic” for insisting on an acceptable standard of care and on occasion bullied into enduring something which fell way below. There is no doubt that the social care system fails many and for those fortunate to have a family prepared to challenge procedures the outcome can sometimes be very different than for those that don’t. I feel very strongly that the elderly have a right to dignity with care and when you have to deal with a system where policy becomes more important than the welfare of the most vulnerable in society then it’s time you reviewed it.

Nothing is ever just one phone call or just one email and sometimes making, what for others would be a straightforward appointment, takes weeks but more often than not, months. We all know that when you call a service provider it’s a bit of a lottery in terms of who answers the phone so imagine speaking with yet another dismissive jobs worth concerning a loved one’s welfare. Trying to hold down a job and manage my father’s affairs leaves little time for much else; my hair hasn’t been cut since December and I am badly in need of a dental appointment but that has had to wait as there are more pressing things on my ever-increasing agenda. My phone bill is nearly equivalent to the cost of a small car and I can’t remember the last time I have had a night out with friends. There are days when the sheer enormity of the task in hand becomes just a little overwhelming but I have come to realise that sometimes you just have to put down your sword and leave slaying dragons for another day.

So what keeps you going despite the constant rejections and refusals? Without a doubt it’s that smile from your Dad; the one you thought you’d never see again. The smile that says he’s safe at long last surrounded by compassionate people and that the hard fought battle was truly worth it. And so on a sunny day here in Devon you shed a tear and say a silent prayer of thanks knowing that he will now have the best possible care for the remainder of his days which my friends, is truly priceless.

The old fella with two of his favourite carers

The old fella with two of his favourite fabulous carers