Imprisoned in lonely, horrid death

I read today that in the UK 25% of those who died from Coronavirus did so living with dementia.

Hmm. I wonder what Alzheimers Disease International (ADI) is trying to achieve in publishing this figure.

Why would we be surprised? Many people living in care homes, over the age of 75, love with dementia. Care homes, as we now know, received patients from hospitals in March and April who had not been tested for CV19. As a result, some care homes saw large numbers of infections and deaths. Others, who refused these discharges, have had no infections.

CV19 has caused higher mortality in people over 65, with underlying health conditions, and with diabetes. Well, guess what! Many of the people in care homes with dementia have underlying health conditions. Multiple conditions.

I can see that it was disastrous and unforgivable to discharge patients without tests. But I do not see that people living with dementia have had a more unreasonable time under CV than others. We have all suffered, young and old alike.

The trouble is, if you live with dementia you need social contact and activity to keep you going, for your wellbeing.

A huge issue now is that care homes are refusing visitors. Perhaps this is because they fear the reputational damage that might result from in home deaths from covid. Perhaps they have massive risk aversion on behalf of their residents. And – no perhaps here – they do not have the test kits to allow residents, staff and visitors to be tested. Despite Matt Hancock’s promises.

But denying visits damages at least two people…the visited and the visitor. I know of the wife of a person with dementia who has been unable to visit her husband since early March. She is both upset and angry. Her husband, whose dementia is quite advanced, depends on daily face to face visits, lots of time to talk, do things, understand, make contact through the fog of dementia.

And there must be many thousands around the country like this.

My worry is that ADI’s published data will make care home managers and owners more reluctant to allow visitors. And families may feel less willing to demand visits, for fear of passing on the disease.

Freely available testing would get round this. So, Mr Hancock, please get this done now.

Secondly, let’s not forget that people die. Of course they die. And care home residents are no less mortal than anyone else. Indeed, by definition, their time on this earth is limited, perhaps short.

We should not, must not, cause those final days, months, years, to be miserable, and indeed hasten death, by pretending that life must be preserved at all costs. Wellbeing is crucial to physical and mental health, no less so for people loving with dementia than anyone else.

So what if a person dies a few weeks or months earlier – than what? – if they are happy, contented, loved…and feel loved.

Ask us, living with dementia. Don’t assume, from your professional, risk averse life without dementia. Ask us.

What do we want? What do our families want?

And don’t, for God’s sake don’t, assume that our diseased brains mean we don’t have capacity to make choices. Some of us will lack capacity, either temporarily or permanently, at some stage. But assume we CAN make decisions. Even if you don’t like our decisions, or think we are taking unnecessary, inadvisable risks.

Our lives are OUR LIVES. We have fundamentally human rights to live happy, fulfilling lives, and family lives too.

You do not have the right to take that away and imprison us in horrid, slow, lonely deaths.

5 thoughts on “Imprisoned in lonely, horrid death

  1. Powerful words as ever, George. Let’s hope they reach the relevant people. Hope you are keeping well. Miss touching base with you. 💜

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    • Words we’ll said!!!
      Speaking as someone who has Dementia, and also as daughter, who lost my Mother just b4 Covid.
      It would have been Torture for me and Mom to have been kept apart.

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  2. Well put as always George. It’s strange how we often, in the same week write about a particular subject as sometime this week I too have a blog about Care Homes. Sending you a big hug 🤗xx

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  3. The Mental Capacity Act, England says that a person might be able to make a decision one day but not the next but can again, same that they might be able to make a decision about A but not B. It is time consuming for the professionals, been there done that, but should be followed. Worded carefully.

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