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.
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
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
I know you’re scared and if I’m honest I am too and more than a little devastated. As you have always said to me life is seldom fair and you are so right. Your stroke had been a bitter blow for the family but we have been so proud of the way you have dealt with your rehabilitation and will always be grateful to the medical team who have supported you throughout.
It was a truly priceless moment when you were able to sit behind the wheel of the car again for the first time in eighteen months beaming ear to ear with joy from regaining your independence which regrettably would be short-lived. I have been right here alongside you throughout the highs and lows and cheering you on from the side lines. It’s been a big learning curve for all of us and I think I’m a better and more patient person as a result. You have borne this struggle with grace and humility which is something many would have wrestled with. You have fought valiantly against all odds and overcome every challenge so it seems a cruel disappointment to ask you to do that again particularly as there will ultimately be no reprieve or happy ending this time around.
We’ve both known for some time that things just haven’t been right. A bigger and more fearful spectre has crept into our lives whilst we were busy focusing on your rehabilitation one which we both chose to ignore partly through fear and partly ignorance. We all quickly dismissed your forgetfulness as tiredness or a side effect of your medication. Forced smiles and pretence isn’t something that you or I can do very well for any length of time and inevitably we have had to face up to the consequences.
I’ve always thought that you need to roll with the cards you’ve been dealt but I wouldn’t be human if I didn’t feel a little dismayed at having my new-found freedom brought about by your recovery, snatched away quite so soon. As much as we would like to even we can’t beat this malevolent condition.
By the time you read this we will have started the process of tests again and yes there will be changes some good and some less welcome. There will, no doubt, be a few less than sunshine days when we will all rage with frustration but amongst them will be precious moments too. So let’s make these the best days of all filled with our favourites things; picnics, blackberry picking, kite flying and sitting on the porch watching the sky ablaze with lightning during a summer storm. Neither of us can change the future but we can make every cherished moment count.
So for now old fella, whilst this is just another setback along the road it’s a journey you won’t have to walk alone. We will always be able to smell the flowers and there’ll always be more dances but as with everything else in life we need to take this one step at a time just as we’ve always done.
As we celebrated the old fella’s birthday this weekend I can vividly recall the morning, one year ago when my Dad woke up complaining that he’d pulled a muscle in his arm but it was obvious to us all that something was seriously wrong. After a visit to the local doctor’s surgery he was despatched to the bus stop to make the thirty mile roundtrip to the hospital on a very stormy day lashed by gale force winds and torrential rain. When I returned from work I found my Dad soaked right through explaining that he’d had to ask the bus driver to retrieve his bus pass from his pocket as he was unable to and that was the first time of many that I was to cry tears of frustration that year. It’s hard not to when your old Dad who has always been so strong and self-sufficient struggles to even feed himself. Other times you laugh at your own incompetence such as when I accidentally locked him in the house with a lunch of bananas and sausage rolls completely forgetting that he would be unable to open them. I am forever trying to find ways to shave minutes off my day often falling into bed exhausted and I discovered pretty quickly that I’m not superwoman or a juggler so some things have had to change. Inevitably, it’s the things you enjoy doing the most that get sacrificed when you are under pressure.
It’s been a real journey of discovery and I have learned the hard way who my real friends are. Whilst many of my contemporaries are wrapped up in weddings, new houses and new families my life starts at five am when I’m awake for work and the rest revolves around hospital appointments, shopping, cleaning and repeating the whole process again the next day. You no longer have shared interests because you have very different priorities. They struggle to identify with your commitments as a carer and you constantly explain why you can’t just jet off with them on a much-needed holiday. Concerned friends soon stop asking when they realise you can’t fix a stroke with a couple of aspirins. Your hopes and dreams are parked and the life you imagined yourself having fades into the distance; this situation quickly becomes the new normal. Do I ever get resentful? Well of course, I’m only human after all and sometimes it’s hard surrendering your independence for dreary routine. There are no quick fixes here, no magic wands to restore mobility and recovery has been painstakingly slow but this is a marathon not a sprint.
There is help out there for those that are prepared to fight the system or are fortunate enough to have someone who is able to do that for them; for those that don’t no doubt they fall under the radar of our social services and struggle on alone unaided. In addition, gadgets enabling an easier life for those afflicted are ridiculously overpriced again taking advantage of the most vulnerable.
For those finding themselves in a similar situation if I could I’d gently take your hand and assure you that you’re not alone and that there is life after a debilitating family illness. Is it going to be harder than you imagined? Most probably! Will you have some really bleak days? Without a doubt you’ll feel incredibly overwhelmed, bone-tired and isolated but your sense of always finding the funny will get you all through. Will it get better? Definitely. It’ll be a big learning curve for everyone with both uplifting positive and desolate negative moments. You’ll lose friends but you’ll meet better ones worth keeping. For every hard-hearted dismissive jobsworth you encounter you will stumble across people who are like bottled sunshine. The old fella has made tremendous progress but we’ve learned to celebrate the little simple triumphs like seeing him pick up a knife. So why then don’t I just quit my job, buy a ticket and run away to Turkey? Because quite simply, he’s my Dad.
H.O.P.E. = Hold On Pain Ends
Not the best picture but this little one-footed fella dodges all the bigger birds every day to sneak a crumb when I’m feeding the rest and he reminds me that you can overcome anything.
For those facing the same struggles as our family if you haven’t already please try contacting the Stroke Association who are just amazing and helped us when no one else would.