So what’s a good day for you? A trip to the spa, beauty salon, picnic with the family or a lie in. For many carers a good day can be one where their loved one isn’t picked up by the police at 3am strolling around the streets or found wandering around the garden naked or perhaps one where they’re not up to their armpits in incontinence pads. Many of you might find humour in these situations, however, for a carer they can frequently be another day of overwhelming black despair leaving them nowhere to turn in a society that’s simply doesn’t understand dementia and habitually fails both the carer and the sufferer.
After my Dad’s accident a good day for me would be one where I didn’t have to jump back in the car after getting home after a day’s work followed by a visit to see him when I would shower him and then drag myself wearily home. As I opened my front door I would often hear the phone ringing because he’d had another fall or was having a bad day and insisting that I collect him immediately.
When you’re a carer there’s no such thing as a sick day or a day off; you could argue that it’s the same for parents but the thing is no one really ever wants to be a carer. This is a role thrust upon many overnight and it’s irrelevant if you don’t want to be one or have no experience in the role; a little like national service. No one prepares them for the coming days, weeks, years of continuous round the clock care of soul destroying drudgery. Days of endless washing, cleaning, bathing, toileting, feeding and frequently getting through the day on pure adrenalin not having slept for days because their charge hasn’t; then getting up the following day to do it all over again. Trust me when I say there are few things worse than severe sleep deprivation and with no light of the end of the tunnel that makes it all the harder to bear on some days.
Let me be clear about dementia there is NO remission or recovery. Those that have nursed a loved one through dementia will know that they don’t fade away gradually in front of your eyes but destructive chunk by chunk on a day by day basis. Often it’s hard to recognise their loved one particularly when they do and say such uncharacteristic and hurtful things frequently becoming increasingly aggressive; I never imagined that I would one day be bathing my once proud and mild mannered father.
Spontaneous drinks after work or lunch with friends become a thing of the past and friends start to fall by the wayside partially through lack of understanding and partly because you no longer have anything in common. Every carer would love the freedom to accept a random invitation but sadly suitable “sitters” for dementia patients are few & far between. However, much as we like to think we live in an informed society; dementia carries a stigma of elderly incontinent folks. The worst thing is most of us will one day be those incontinent old folks.
I don’t mind admitting now that juggling everything whilst trying to be a carer nearly broke me so if you or a loved one are currently fighting the good fight day in and day out, I wish you courage and resolution on your journey. Know that many follow in your footsteps and many have walked that well-worn path before you. Be assured that it’s okay to feel resentful and it’s also okay to vent. Seek help and don’t take no for an answer as I know that it can be a postcode lottery in terms of the support you get but remember too that you need to take care of yourself. Time is the precious currency of carers; it’s worth is beyond gold and you can’t buy it or steal it but for many it is a luxury that is in short supply.
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 fabulous carers