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 Care Campaign For The Vulnerable

Care Campaign for the Vulnerable is learning of the pressures faced by conscientious led Care Providers striving to offer a caring and safe environment to both service users and staff. Safety monitoring is proving to be a invaluable care assist tool - bringing a more open and transparent culture into care homes as well as saving valuable resources within the care home sector and the NHS

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Dementia and Human Rights - Author Joy Dey

28th June 2020


Dementia and Human Rights

By Joy Dey - A daughter in care

"If ever there was a time to consider Dementia and Human Rights it is now.

Before the Pandemic, many homes operated on a 'maximum profit/minimum outlay' basis. Too often, profit came before care.

"It's a business" replied one Manager when a carer asked "where's the care?". The carer was discussing some much needed activities (stimulation!) for the residents. Yes, it's a business. Understood. But should care ever have been privatised? Not in my opinion.

Some residents are able to speak up for themselves but, with the constant increase in dementia diagnosis, the bulk of residents outweigh the compos mentis (that's another story altogether).

Those living with dementia rarely have a voice, for the simplest of things ... like the food they eat or even when they are allowed to use the toilet. Of course, many carers will ask the resident, as they are required to, what they want. If, like my Mum, she is asked if she likes 'Hitler or Steak' ... she would simply shake her head, or repeat one of those, hoping that she is giving the answer required.

More dementia training would assist in that regard. Sadly, many carers still do not have the faintest idea about dementia. I hear them laughing because a lady is asking for her baby.

"How can you have a baby Doris, you're 80 years old!"; or

"Don't cry Molly ... don't be so silly"; or

"What are you talking about Jean, your Mum and Dad are dead"!

Some residents are lucky because they have loving family (or friends) that, hopefully, have Power of Attorney. Or, at least, have a family member who can speak for their loved one with the home and/or with the GP and Hospital. How much is ignored though? How difficult is it to request that your loved one's nails be cleaned, and see it done? You might suggest that they love a particularly type of music. You provide it, and it's left in a drawer and they are left staring at a wall all day - at whatever inappropriate TV programme is on, or - indeed - a blank screen?

My Mum is very lucky. She is living in an excellent care home (albeit her fourth!) with loving staff and good Management. She is clean, well fed and loved. She is compliant, which must be an advantage. Then she has me. I provide her stimulation. The care home do not have the capacity (similar to many others) to stimulate her in the way she needs. I can provide those extras that they, understandably, don't have the time for. I can speak for her although, sadly, I only have Financial Power of Attorney. I thought I had both but I don't. However, the care home do their best to accommodate me, as does her GP. NB They have taken excellent measures to ensure, to date, there have been no cases of CV19 and all staff and residents have tested negative.

I've not been able to see my Mum for three months, like many others, following the lockdown. I used to go 4 or 5 times a week for several hours. I bought a wheelchair taxi, when she became immobile, and we used to go everywhere, including a trip to London to see the Musical 'Only Fools 'n 'orses' which she loves.

We can no longer do that, of course, but the care home recently offered a window visitation opportunity which was the best I could hope for. I could visit for half an hour. I could see and entertain her (musically) from the window. She was a singer and so am I. That is when I would get her back in the room! She absolutely loves music, as do most of us! We can no longer have a conversation, due to her stage of dementia so this was wonderful for me and her. [NB I have some footage if you would like it? Or some pictures]. Unfortunately, some relatives took advantage of that privilege and that has been completely stopped.

If my Mum had control of her rights, she wouldn't be in a care home. Who would choose to be? Not in the current climate. I made that decision for her, however, and I believe it was the right one. She is happy, relaxed and well.

Where we do all stand as far as our Human Rights are concerned, following the pandemic. We have a voice, for now, but how many vulnerable adults have no voice, not even when it comes down to the simplest of tasks or pleasures. Does the GP have a right to vaccinate my Mum, despite her allergy being noted on the GP and Hospital records? I know my Mum's likes/dislikes, needs and wants more than anyone but will my voice even be heard, at the final curtain, let alone my Mum's?"

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Care Campaign for the Vulnerable is learning of the pressures faced by conscientious led Care Providers striving to offer a caring and safe environment to both service users and staff. Safety monitoring is proving to be a invaluable care assist tool - bringing a more open and transparent culture into care homes as well as saving valuable resources within the care home sector and the NHS

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