When dealing with dementia is easy??

[Skye]

For the benefit of newer members, Ken has Lewy Body dementia.

He and his wife Janice have done and still do a tremendous amount of work for the society, raising awareness and fundraising.

With his son Mark, Ken has recently completed the coast to coast cycle ride, raising over £2000 for the society in the process.

He's an inspiration to us all.

 

[Tender Face]

What should a person with dementia look like?

Dear Ken, what an astute comment as always (and I'm sorry it comes from pain for you). My mum was diagnosed with Alz + LDB - no-one would discern her 'memory problems' from her visual presentation .... there have been one or two 'bad days' over the years when I confess her eyes are not quite as twinkly perhaps .... but it's nothing like someone being in a wheelchair, having a white stick, an eye patch or crutches to give a visible sign to the world that they are battling some problem ....

You always give food for thought Ken. Quite remarkable. I do hope life is treating you and yours as kindly as it can just now and thank you for continuing to share it with us,

Love, Karen, x

 

[cgf]

My Mum is 60 and the grip Alzheimer's has had on her has been dramatic and extreme. When people make throw away remarks or crass jokes about dementia/alzheimer's I wonder if they realise the following:-

Extreme agitation - not funny
Pulling one's hair or scratching one's hands so badly due to anxiety - not funny
Forgetting how to wash, bathe, dress and perform basic everyday tasks - not funny
Crying uncontrollably as to the sheer frustration of the situation - not funny
Realising, and experiencing for the first time, incontinence - not funny
Feeling so totally trapped, isolated and scared - not funny
Last and by no means least, losing your whole being and the life you once had and the person you once were - SO NOT FUNNY.

 

[citybythesea]

I'm throwing leaves in the wind here. The look that most people refer to is what we as carers are so particular about trying to hide. It is the unkempt hair, the week old smelly clothes, the mumumbling and agitation off on people for no reason...and finally, when it does take effect there is a lost look in the eyes. Having talked with several people here about this post most agree. We all agree that a generalized joke is not appropreiate in a group where not every persons history is known. We do agree however that we will listen to the crass jokes if they are bringin in money for the cause. It's horrible but as an "uncicilized" american I guess I have been more desensitized to being sensitive to plights. (Believe me I am not a....well I've been known to give my last dollar to help someone more needy...it was stupid, but worth it.) I don't and never would agree to telling someone they don't look like they have AD...that is well, a morons way of showing how uneducated he is.

KenC, I hope you don't have to go thru that much...and I hope you have a good comeback....perhaps "you don't look like a moron to me, either."


HUGS

Nancy


PS...Oncew again I apologize if I have offended anyone, not trying to.

 

[Skye]

We do agree however that we will listen to the crass jokes if they are bringin in money for the cause.

Sorry, Nancy, but I don't agree!


cgf, I agree, It's not funny!

 

[towncrier]

making light of Alzheimer's

I was enraged to read in The Guardian this month a detailed review of "Contented Dementia: 24-hour Wraparound Care for Lifelong Wellbeing" in which psychologist Oliver James describes his mother-in-law, Penny Garner's's supposedly new and revolutionary approach to caring -basically good practice in communicating with the patient. "Learning to Speak Alzheimer's" was written about five years ago by an American author, and much the same techniques were discussed, and were named "habilitation." Garner calls the three basic commandments of her system "Specal."
In his shameless puff for his book, James asserts that the long-term memory of the Alzheimer's patient is "intact," and that by referring to it, carers can keep the patients contented and able to live a kind of "happy Groundhog Day." He makes the breathtaking statement that "people with dementia suffer from only one major disability...their short-term memory is defective.....Luckily, their long-term memory is working fine and completely logically." Would that it were so, and that all our stricken loved ones could live out the rest of their lives as the "happy bunny" described in the book, whose old memories had been plugged into.
Tips that carers have found to work are welcomed by other carers, as we who use the Talking point forum know. They should be shared in order to spread good practice. I have no quarrel with the insights developed by Penny Garner in her caring role. But her author son-in-law over-eggs the pudding in claiming that all Alzheimer's patients have only a short-term memory problem, and that caring for them properly is simply a matter of applying sympathetic conversational techniques.
How arrogant! And how insulting to the rest of us carers!
I have written to the Guardian pointing out the factual inaccuracies in the review. But that such a book could be written at all proves that we have a long haul ahead of us if we are to tell it how it really is to have Alzheimer's, or to be responsible for the care of people with this most dreadful disease.

 

[jenniferpa]

You weren't the only person to feel that way. Several of us got quite stroppy here http://www.alzheimers.org.uk/talkingpoint/discuss/showthread.php?t=12025

 

[towncrier]

Thanks Jennifer

I have just read all the posts you directed me to. My caring role has been too fraught lately to have let me read the Forum. Thanks to all who shared their reactions to the book review. Sometimes it gets too painful to read about all the distress this disease entails, but sharing the sorrows makes one realize one is not alone. I am certainly going to have a go at publicizing it by distributing the leaflet.

 

[TinaT]

Any type of mental illness is subject to stigma, crass jokes, being ostracised and, at best, left to suffer in silence. I wish so much that mental illness could be viewed by the general public in the same way as cancer - which is given the sympathy, understanding and compassion it deserves to have.

Just as cancer has many forms so has dementia but dementia gets lumped together under the general impression of little old ladies/men quietly and gently fading into the sunset! The truth is far more horrid, agonising, isolating, undignified and unpleasant than that.

The number of people who describe to me a relative as 'having gone the same way' as my poor husband, I just can't count! They know nothing of his illness or the pain and suffering he is going through.

xxTinaT

 

[lesmisralbles]

All I get told is put him in a nursing home

Bog Off.
Barb X

 

[Margaret W]

Well,is there an answer? My dad died 4 years ago of stomach cancer. He knew 18 months before that he had it, and that it was terminal. He never suffered any pain. His heart took him at the end, not the cancer. He spent those 18 months planning, decorating, flagging the garden so mum wouldn't have any maintenance to do (probably gave him the heart attack) and we all cried buckets when he died suddenly one morning. Mum has AD and it is dragging on, she has no interest in life, doesn't remember anything, has delusions now, and could live for another 20 years in that state. Give me Dad's death any day.

Much depends on whether there is pain or mental suffering that the person is aware of. But in my parents' situation, I'd rather be dad than mum.

Love to everyone on this site

Margaret

 

[zebra]

Joking and insensitive people

Sometimes joking about it is the only way me and my sister can cope. And I joke with my mum sometimes, flashes of her old self and old humour come through, and I say things like "now come on mum stop this old lark!" and "Come on put a bit of lippy on, never give up the ghost" and she does brighten up. And me and my sister do joke about losing it ourselves. NOt everyone has got the right words to say, but I must be lucky because my friends, colleagues and anyone I have told about it have been fantastic - my friends in particular have given me briliant ideas, and come to see Mum with me and taken her out (I am the only person in the western world who cant drive - at the age of 54).
Don't be too hard on people, there have always been jokes about taboo subjects and always will - Joan Rivers joked about 9/11 and her husbands suicide - I work in a hospital and the doctors and nurses joke about people with the most dire conditions (NOT in front of them obviously). Not saying its right, but its a part of life, and as I said before, sometimes jokes and black humour see you through things.

Just another viewpoint - hope noone hurls bricks at me!!

 

[jc141265]

Not going to hurl bricks at you Zebra
I think we all resort to humour...and I don't think humour is ever the problem, its when someone says something ignorant...its one thinking to joke about the disease when you know what it really is like, its another to joke about it when you have no idea.

 

[Canadian Joanne]

Zebra,
I think there is a difference about my making jokes with close friends and family and an casual acquaintance or work colleague making the same joke.

I've told many funny stories about Mum but my back goes up instantly when someone makes a flip remark about memory loss and getting "Old Timer's" disease (God, I really hate that "Old Timer's" thing - I don't know if they're joking or simply ignorant and/or stupid). Not rational, I know, but there it is.

In the same fashion, I can laugh and cry with people here and I don't think anyone here would offend me with their jokes or stories. It's the old story - we're all in the same boat and really understand.

I'm like you in that I would much prefer to laugh rather than cry. So I crack jokes, make outrageous comments, tell stories about Mum and so on.

BTW,

(I am the only person in the western world who cant drive - at the age of 54).

No, you're not. I'm also 54 & don't drive. Don't have a licence, don't want one. I'm one of those people who was born to be chauffeured. That's my story & I'm sticking to it. It irks my husband something fierce but I don't care.

I always say I am one of the 8 people left in the western world who doesn't drive. Great minds think alike! (and fools seldom differ, but we won't go there).

 

[fossil]

I think in the last month when people ask "How's your mum" I've stopped saying "Oh you know.." so they don't feel uncomfortable - things will never change until everyone understands that dementia is not an old lady sat in a corner with a slightly vacant expression, smiling serenely.

Oh how I wish the rest of my clueless siblings would realise that

 

[lesmisralbles]

Do not get mad

in claiming that all Alzheimer's patients have only a short-term memory problem, and that caring for them properly is simply a matter of applying sympathetic conversational techniques.

Prove your point.
If he is wrong, and you are right. Prove your point.

I would love you to prove your point.

Barb

 

[Prague09]

Heartless

Obviously not sensitive to the needs of others other wise watching her poor mother suffer the anguish of AZ would have given her a good understaning of what it is like to watch a loved one suffer the undignified effects of the disease and the feeling of helplessnes that we all feel on this site. Prague09

 

[Anne C-W]

Such a slow and painful way to die .....

Clearly the person talking about dementia in this way did not have a clue. My mum died in April after more than 16 years suffering the effects of vascular dementia. She was only 68/69 when the first symptoms started and she was only too well aware of the short term memory loss and confusion that meant she started to lose control over her life. She was an intelligent and active person who had always liked to be in control. One of the worst things is knowing that you are losing that control - that you can no longer drive and therefore maybe cannot get out to all our usual activities; that you get in a total muddle with your paperwork which can be immensely distressing when the red reminders come in; that you can no longer find the words to communicate with those you love or with strangers who then think you are stupid. Through the years ..... and years .... until you do not know your name, you do not know your family ..... you cannot walk, cannot feed yourself, cannot control your bodily functions; till you are locked up in a home with little or noting to do. Suggest to this person that they spend a few years in prison, with a nappy on, drugged into confusion and gagged ......
Sorry folks, I really don't want to be so negative as I do believe that if society had a better approach and understanding, we could give people with dementia a better quality of life. But the sort of ignorance diplayed by this person will not help us to achieve that better world.

 

[connie]

Dear Anne, welcome to Talking Point.

This book has been discussed now for some time, under a couple of threads.

Your comment

But the sort of ignorance diplayed by this person will not help us to achieve that better world.

made me think. My own opinion being that if it is not ignorance it is certainly a 'rose tinted' viewpoint.

 

[JPG1]

Hello, Anne

When we read your post, we thought you were referring to the insensitive jokes (so-called jokes) cracked left right and centre by people mentioned by Nat at the start of her thread and then discussed throughout the thread.

But from Connie’s comment, it is possible that you were perhaps talking about the book ‘Contented Dementia’, that was mentioned briefly towards the end of the thread. In which case, we may have misunderstood you.

If you are referring to the insensitive jokes, then we could not agree more with you.

There are some things which people perhaps should think about before they open their mouths – and jokes about disability in any form whatsoever rank amongst the lowest of the low, in our experience of various physical and mental disabilities.

If you were indeed referring to the 2 newspaper articles about the book, then it might well be worth reading the book, because it contains a lot of useful information. Useful for many professional support workers, as well as family. Having read the book, there is very little ignorance displayed by the author in the book, but much experience.

However, the sick jokes display ignorance – and we will forever and a day continue to fight that kind of ignorance. In order to achieve a far better understanding of any disability.

There’s a BBC “Have Your Say” page currently asking people whether or not they will be watching the Paralympics. It is genuinely shocking to read some of the “Readers Recommended” comments about disability, in any shape or form, and especially about the efforts made by all the disabled athletes competing in the Paralympics.

This so-called civilised world that we live in has a long way to go if it is ever to learn tolerance, acceptance, understanding and compassion.