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 wandering 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.