The Forgotten

When I read Pseu’s post this evening, just after listening to the News Quiz and laughing incontinently, I wanted to bury my head in my hands and cry, or go outside and rage at the moon.

Gradually, as I prepared supper, despair moved to anger.
We should be out on the streets. People living with dementia are still people.

In a few short words, Pseu had explained how the home where Mother is has such a great reputation. It is evidently a far far better place than where her relatives reside. Yet, we, Mother’s family, are acutely aware of areas where it is failing her. So this greatness is relative.

Relative to places where residents in a ‘home’ are left stripped of dignity with unswallowed food in their mouths, lost, frightened and bewildered.

Since Mother has developed dementia, I have come across a strange prejudice; the undeserving old. People fortunate to retain their mental and physical faculties are deemed ‘marvelous’ ‘an example to us all’. Those who succumb to mental and physical frailties are somehow exposing an inherent weakness of character; a moral deficiency. They deserve their troubles.

This is rubbish, but it allows society to feel off the hook. The numbers of people living with dementia are growing. It’s time we concentrated on making that living as comfortable and carefree as possible.

It’s easy for politicians to ignore people with dementia; they don’t vote; they sure ain’t sexy. So it’s up to us to do what we can to bring change and recognise that dignity and respect are important whoever and however you are.

14 thoughts on “The Forgotten

  1. Do you think that there is an active belief that people with dementia deserve their troubles, or is it that people don’t know how to respond when faced with it, and feel frustrated or disturbed that the sufferers don’t behave in a socially acceptable way?

  2. I think there is an unthought through belief that people with dementia have failed in some way. Those who retain their faculties and physical abilities are held up as examples.

  3. Isobel, I actually think the home really care for them both, but my aunt in particular has an exhausted look about her. And …. well, it’s not ideal

  4. Having gone through all of this with my mother some years ago with her Alzheimers experience I understand – and agree. There’s something lacking in not just people’s understanding of dementia in its many forms but in the ability for those who are fortunate enough NOT to have a loved one with dementia to empathize. That includes a lot of the caregivers – on all levels – inside and outside nursing homes or other care facilities.


    • I find staff consistently ignore our advice about things that will stimulate my mother. It is as though they think we are deluding ourselves. Even when they are with us when we read to her and see how she responds they are reluctant to include reading in her activities.

  5. So true, Isobel. Hand me a placard. Where there should be empathy, there is prejudice. I have a horrible feeling that part of the “prejudice” – that unwillingness to engage with patients or acknowledge that they can have a better quality of life is lack of understanding and fear on the part of the onlooker – fear of that happening to them.

    These people are at their most vulnerable. That can bring out the caring empathetic side of people but unfortunately it can also bring out a callous disregard. Attitudes do have to change.

  6. I think people who don’t develop dementia are held up as examples because that’s what most people would wish for themselves.

    I think Pam has a point too, that if you haven’t experienced it at first hand, you may have a different perspective, which is why I couldn’t quite comprehend the concept that people could believe dementia sufferers deserved their fate. My maternal grandmother had dementia, and, although she died when I was a teenager, I remember the last few years of her life and some of the challenges faced. I’ve grown up thinking something along the lines of “there but for the grace of god” and hoping that I’ll follow the route of my paternal grandmother instead.

    I also wonder whether part of the reason that the staff aren’t responding to your suggestions is because they think it will mean more work for them – although not seeing that it could improve how patients respond (which would mean things were easier for them)?

  7. What is the attitude of the caregivers about the eventual death of the person under their care? Are they expecting the death and they themselves have given up on the humanity of being with the person as presented, the here and now?

    This is hard to articulate. My brash question in my head was: They don’t feel like doing anything more than the basics because “she’s just going to die soon”? Or: what difference could it make; she has dementia?

  8. My mother suffered from dementia as well. I am thinking of you as your walk this path.Although my mom was fortunate to receive fairly good care, it was difficult to lose her before she left this earth. Empathy is a characteristic many people lack.

  9. I have heard some comments about the new film on Margaret Thatcher from people who think her dementia should not have been mentioned, as though it were something to be ashamed of.
    My mother’s carers are not callous, they look after her physical needs well. They do care. From what I have seen, I think they find it hard to believe that my mother should enjoy poetry that they do not know or appreciate. After all, if they with their faculties intact, struggle to read it they may think that Mother cannot possibly derive any benefit from it. When they witness her response, their attitude shifts a bit, but I think the prevailing mood is that her dementia means this is not something worth doing. Instead she sits in a lounge where radio 2 plays in the background, or daytime tv is on.

  10. Just to let you know I have read all of this and recognise the feelings I have experienced after visiting my aunt echoes what a lot of people are going through as well, or have been through with close relatives. Dementia is a very complex condition and one of the problems in dealing with the right type of care is a lack of adequate education for the caregivers and I feel this is where the solutions lie – but adequate funding for training is hard to come by though and homes running on a very tight budget just don’t send their caregivers on the right courses. .

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