‘I use to like it here, but all the smiley faces have gone’…..a comment from a resident with dementia in a Care Home when everyone started wearing masks…..
Our lives are ebbing away, yet there’s so much risk aversion about visiting. For those of us living with dementia, our memories are our most treasured possessions and we lose some every day. Imagine if you lost something of special value everyday – that’s the daily reality for those of us living with dementia. I’d give up possessions anytime if I could have some guarantee that my memories would remain intact…
So imagine having been in a Care Home and not having seen those closest to you for the last 6 months…imagine the effect dementia has on your ability to remember those closest to you?
So we’ll deteriorate, though the lack of stimulation given to us directly from loved ones who know us best….. and so much our lives will disappear without seeing loved ones – what sort of quality of life is that when the quality of our life is already changing?
Is it really person centred care, to allow the confusion of seeing someone via a screen or behind a screen in a garden that doesn’t mean anything to the person with dementia?
Each stage related issue should be treated with individuality. Some may have coped with seeing their loved ones on zoom, outside in the garden, but sooo many others have lost that connection. Shouldn’t families be allowed to make a choice? To assess the risk themselves?
Of course not all care homes have the same rules, yet more inconsistency. Some have said, “They’re keeping their residents safe”, but safe from what? Surely you have to weigh up the risk of Covid striking the home with the risk to the residents of not physically seeing their loved ones in close proximity? Our physical lives may be long but a fragment of our mental lives disappear each day with dementia. Many Care homes appear to be afraid of being the next Care Home to have an outbreak so go into survival mode to save their reputation. But have they really thought of the effect this may have on someone in the later stages of dementia? They may be keeping them alive but you want that life? I know I wouldn’t.
I’m not putting the blame at the door of the Care Homes. With the pressure they’re under they need more consistent informed guidance. As for the carers, I can only imagine the multitude of emotions they’re going through.
Imagine sat there alone….vague recollections, sparks of memories fleeting through the ever fading brain of people visiting who make you smile……now wondering why no one visits, or worse still, forgetting that anyone ever visited…..being taken into a garden with a strange plastic screen and figures at the other side , strange figures, so you look down to avoid seeing these strange figures with strangers faces from afar….
Those closest to them know them best, how to interact, what will work, what won’t. No one with dementia can be sure what memories they’ve lost. Those around us are often our guardians of our memories. After all, how do we know what we’ve lost if we can’t remember them? It’s only when others question or relate memories to us that we question our own thoughts.
In desperation a friend of mine visited her husband who is a couple of years younger than me. It was a garden visit but they had a big perspect screen dividing them. It became so traumatic for them both when the husband started clawing at the screen as he didn’t understand why he couldn’t hold his wife’s hand and be close to her. So tragic, yet easily solved.
The care home staff are allowed to go about their lives, shopping, maybe even going to the pub, but loved ones aren’t allowed to visit without all the barriers. Yes, the care staff have done an amazing job in this period of strangeness but why can’t exceptions be made where physical touch is the only communication that works ? They could have a test and if it comes back negative, why shouldn’t they be able to visit as normal? Choice not barriers. Alternatives, solutions not one size fits all.
One lovely lady I know has stopped visiting as it was too distressing. Her husband simply didn’t understand she was there as they had no physical contact….the only thing that stimulated his memories.
We need touch, we need whatever each individual responds to for connection before that connection is lost. Imagine your loved one dying in a care home and not having been able to see them or hold their hand because ‘of the rules’………
Care Homes were forgotten by the government at the beginning of all this strangeness and now it seems people with dementia in care homes are still being forgotten…..😢
The Dementia charities are finally working together and one of the first articles they published was around the state of Care Homes at the beginning of this pandemic. But one article won’t bring about change. Outrage at the time, yes, but soon forgotten. It needs continual hammering home that this needs to change. Look at the situation in the beginning and look at it now…..very little has changed for people with dementia in Care Homes…..
Many are simply existing. Would that be the sort of life you would wish for your loved ones? it’s not a life I would want….because it’s simply not a life…