Not living well with dementia....

[Chaucer 1931]

Why are there no fact sheets or interviews/broadcasts/adverts/public information/professional support and respite for people and their families/carers..who don't live well with dementia??

So many times,I read a thread or post on here with a link to compassionate communication,as though this is not the obvious thing that the carer or relative is already trying to help the PWD...

What and where is the support for them,when all help has failed? Is the answer to put the PWD in a home??
The type of homes to accommodate the people who don't live well with dementia are few,far between and usually full!

And what about for those that have chosen to or no choice but to look after the dementia sufferer at home because there is NO support,no local services,no respite,no body who can give you an answer/shoulder to cry on ,without being given the Alzheimer's society or admiral nurse to talk to,who only then say 'have you looked at our fact sheets? Or have you taken this up with your MP ??"

Yep,cause that just magics it all away and we are all shiny happy people again...NOT!

Sorry,mini vent,but iam,like so many others on here,dealing with NOT LIVING WELL WITH DEMENTIA and would like to open a little window of reality to let some steam off..

 

[Grey Lad]

Why are there no fact sheets or interviews/broadcasts/adverts/public information/professional support and respite for people and their families/carers..who don't live well with dementia??

So many times,I read a thread or post on here with a link to compassionate communication,as though this is not the obvious thing that the carer or relative is already trying to help the PWD...

What and where is the support for them,when all help has failed? Is the answer to put the PWD in a home??
The type of homes to accommodate the people who don't live well with dementia are few,far between and usually full!

And what about for those that have chosen to or no choice but to look after the dementia sufferer at home because there is NO support,no local services,no respite,no body who can give you an answer/shoulder to cry on ,without being given the Alzheimer's society or admiral nurse to talk to,who only then say 'have you looked at our fact sheets? Or have you taken this up with your MP ??"

Yep,cause that just magics it all away and we are all shiny happy people again...NOT!

Sorry,mini vent,but iam,like so many others on here,dealing with NOT LIVING WELL WITH DEMENTIA and would like to open a little window of reality to let some steam off..

Good on you for opening up this debate. G L

 

[Chaucer 1931]

Thanks G.L, I hope it encourages people to open up without feeling awkwardness..

 

[Grey Lad]

Thanks G.L, I hope it encourages people to open up without feeling awkwardness..

Me too: it needs to happen. G L

 

[Grannie G]

There are dozens of us who don’t live well with dementia. We all know the ideal, but few of us make it.

Many of us struggle, eat too much, smoke too much, drink too much , take antidepressants , live a life in tears, but love the people we care for and have no intention of abandoning them.

Compassionate Communication is a guide. It doesn`t mean we are all able to follow it.

There is no answer. We can only do what our conscience dictates.

What saw me through was gratitude I was the carer and not the one with dementia.

 

[canary]

Vent away Chauser.
You are right, there is very little support for PWD and their carers. We are just left to get on with it. There is also very little public awareness of the issues involved and anyone who tries to raise the awareness is accused of frightening or disrespecting the PWD. Sorry - my rant over too.

I think that the problems is that demantia has become the new taboo, so no-one wants to talk about it and there is very little in the way of public funding. Consequently there are few tools available to help. Compassionate communication is a tool that can work well in the right circumstances, but isnt a panacea, Ditto contacting your MP. Ann Mac on here has chronicled her fight to get respite for her very demanding MIL and the way there are no beds in her area. Sometimes there just are no answers.

What sort of problems are you having?

 

[Witzend]

Must say that when we were going through the most difficult years, I would be profoundly irritated by statements such as 'It's possible to live well with dementia' - they so often seemed to imply that if the person wasn't living well with it, then you were doing something wrong, or not doing enough. And so often it seemed to be ALL about the PWD, not the carer(s), not only as if their own lives didn't matter, but as if they shouldn't expect them to.

I often felt that the 'official' line was to somehow make dementia 'cuddly' and 'nothing to be afraid of'. As if all it required from carers was a little kindness and patience, and lots of cups of tea.

 

[Ann Mac]

How odd, Chaucer 1931. I've just posted a blog on this very subject I'm sick to death of the sanitised portrayals we see in the media and the lack of info that's generally handed out. That sort of thing belittles the carers and the sufferes who really cannot live 'well' with this foul illness - and I honestly believe that minimising and ignoring the reality goes a long way to allowing those who are in charge of resources to continually underfund and under-support those that are actually trying to cope with this illness xxxx

 

[fizzie]

I agree that many people do not live well with dementia - it is horrendous and tears people apart - both sufferers and carers. Organisations try to remove 'sufferer' from the vocabulary but in our house we all 'suffered' and that's that.

However, there is quite a lot of support around - certainly in our area - there are breaks and sitting services, some of our homes offer day care, we have a lunch club that accepts people with early/middle dementia, we have a dementia day club once a week and we have a council run day centre. We also have carers cafes in several of our local towns. Not enough but in the big picture very good start.

I'm afraid I'm a compassionate communication fan - that's because I am a fast moving creature, not very patient and sometimes abrupt and I NEEDED reminding that that wasn't a good way to be with my Mum who needed gentleness, TIME !!!!!!!! and love and Patience !!! and compassionate communication did it for me - I also accept that is not everyone's cup of tea.

I agree wholeheartedly that people do NOT live well with dementia in the main - although there are fab people on here who do indeed live well with dementia and will I am sure chime in. I think someone said words are not important but you are right - they are very important when changing the face the society and bringing acceptance, compassion and help to those that need it.

My mother always said it was an insult to call it dementia - that demented people were people in the old days incarcerated in places like Bedlam and that memory loss did not make a demented person.

Thank you for bringing this up, I often wonder if sanitising is a ploy by the powers that be to spend less money on memory loss!! Reduce it's worth and it costs society less money - just a thought.

 

[Quilty]

Yes this does seem a taboo. Most people, even out other families, think dementia is a sweet old dear who is a bit vague and maybe dies not make it to the toilet. They dont see tge rages, depression, accusations, paranoia, accusations, and complete refusal to accept any help. 3 years of caring for my mother at home nearly broke me. She has been in care almost a year and i still feel that i am in recovery and that i have been turned inside out. Nobody i know gers this. TP saved my sanity. I found my peers who are going through exactly the same thing. Thanks for saving me folks.

 

[gringo]

Don’t knock the compassionate communication pamphlets. They were a revelation and a life-saver to me. At first I thought I was dealing with sheer bloody-mindedness and reacted accordingly, and I cringe at the memory of it.
Putting the PWD into a home may be a necessity at some point, but it is not by any means a soft option, and it doesn’t mean that your battles to ensure the PWD is well cared for are over. Even the best CH. can be a challenging place to deal with and visit on a regular basis. Seeing the later stages, at close quarters, will also give you a pretty severe reality check. You will, no doubt, pick up on my guilt here, It goes with the territory.
There’s no magic bullet. From the moment your relative is touched by dementia your life will never be the same. But, however bad it is for you, think what it must be like for the one who has to suffer it. My take is that they live in a very frightening world.
Does anyone live well with dementia? I’ve not met anybody who does. You just have to do the best you can. Grannie G has got it spot on.

There are dozens of us who don’t live well with dementia. We all know the ideal, but few of us make it.

Many of us struggle, eat too much, smoke too much, drink too much , take antidepressants , live a life in tears, but love the people we care for and have no intention of abandoning them.

Compassionate Communication is a guide. It doesn`t mean we are all able to follow it.

There is no answer. We can only do what our conscience dictates.

What saw me through was gratitude I was the carer and not the one with dementia.

 

[Chaucer 1931]

Honestly,I was brought up with Dementia,my grandma had it-she came to live with us,then my mum couldn't cope with the veering from glimpses of the mum she knew to the seething,frail,tortured woman that her mum had become.. So,she went into a home for dementia (apparently)they couldn't cope with her,there were no places anywhere else to have her,so she was put in the local community hospital-in a side room,on a mattress on a floor with restraints..Not speaking anymore,or communicating her needs etc..
We are talking 1994,not the turn of the century..
After a couple of weeks and god knows what medication,she was on the actual ward,like a zombie- had had a moment of clarity at some point,as she had scrawled one word,on a bit of paper-'euthanasia'
She didn't talk again..but after the ward sister saying quite clearly to my mum-she can't stay here,we are ringing around all the homes but there are no beds available,a bed was found,at a recently opened home nearby.. So my grandma was sent there-and by sheer coincidence her younger brother was there and it helped her a little,but she was not living well with dementia at all,and after about 7 weeks,the home said they were struggling to cope with her,her uncooperative way,wouldn't let them clean her or would shriek if anyone tried to coax her to do basic toileting or dressing..

There were no profiling beds,it was a divan style hospital bed,when you were allowed to put rails up on the sides..But one night,someone forgot to put the rail up,and given what sedation was used back then,my grandma rolled out and smashed her head-I will never forget the image of her.. The doctor was called out,said she's not going to last long and within a couple of days she was dead..
The home was never made accountable for what had happened-even though I remember one of my uncles saying,they're pulling rank and it was put down to a terrible accident..
So you see,I swore to my mum,that when the time came or circumstances that she would not be going into a home,after what happened and how her mum had been treated...

I'd like to think that 22 years later,progress in support and helping those not living well with dementia and their families,spouses,has been made but it hasn't really-not enough to make you feel you have support,let alone getting any..

As for my story with my mum,well it has been hard,she has other issues-blind now,half deaf,catheterised and those impairments combined with dementia,well,it has and is not living well with dementia...

Ann Mac,and Raggedy Anne,I've just found the so bizzare thread again-my app on this phone keeps crashing and the timeline isn't one!
I'm full of admiration for you both-along with the rest of us-it is a good job we have each other through here for moral support,because we aren't getting it from anywhere else..

And yes Alzheimer's Society,please feel free to use me and my mum-both looking shattered,fed up and not living well with dementia for your next ad campaign,I'm sure it makes more sense than colluding with the politically correct brigade,because dementia isn't settled by holding her hand over a nice cup of tea!

 

[fizzie]

Well said Chaucer. I am so horrified at your story - and we think we have got the lessons learned right - I don't think we have and I agree
Not enough, not enough, not enough
and
NOT FAST ENOUGH

 

[Chaucer 1931]

Thanks Fizzie,it's true what you say,Not Enough and Not Fast Enough!
I doubt much progress will be made this decade/century,because it still seems dementia along with mental health is a taboo subject and only smiley happy PWD and carers are used in raising awareness,so the portrayal is unfair by balance..

Kassy, I am truly upset-horrified by the abuse your mum was put through and truly sorry for your poor mum and you also,that is something that no person should have to go through,and that the abuser is behind bars,what a vile sick excuse for a human being.. Why are people in these trusted positions with very vulnerable ill people,allowed to be 'carers' ?!...Oh My God!!

 

[Chaucer 1931]

I'd just like to say,that yes-once you have been not living well with dementia,the experience/trauma 'stays' with you.. Kind of some sort of PTSD,because you never look at life the same again,even after the PWD has died,you still feel raw from not living with dementia... It affects the closest who have most contact/emotional ties..
A lady working in a shop in my town( months ago,I don't get out much at all) asked how I was one day,and I sorted of had a mini meltdown in the shop,she joined in with me and said 'I understand you entirely,my dad had passed away 6 months before,but he suffered with dementia and I'm still suffering' 'no one who hasn't had a loved one get dementia' -'doesn't get it,or understand'... And she was right-of course they don't.....

 

[fizzie]

I am totally with you on the fact that no-one who hasn't been through it can understand it and sadly it holds a fear because those who haven't been through it don't want to - not even secondhand - and they are frightened and unlike cancer at the moment there isn't a cure but that will come

However, they have to tell the bad bits and we have to keep telling the bad bits too because that is the ONLY way that things improve.

Kassy I am deeply sorry and you Chaucer too - I think it is difficult for those of us without those after effects to understand - but that doesn't mean we don't care. I DO care, you keep talking because we all need to understand and if your experiences change one single thing then that makes it one tiny step better xx

There have been changes but they are definitely
Not enough
not fast enough
and
not good enough

and if we keep brushing it under the carpet with shiny images it will stay the same.

 

[Risa]

I totally agree with all the comments here. What really makes me foam is whenever there is a story in the newspapers about care homes or dementia, the number of comments you see on-line or from columnists berating people for not caring enough to look after their loves ones at home "because they looked after you when you were a child" etc.

The only good portrayal I have seen of dementia on TV was Holby City a year ago. It showed the mother of a consultant having memory issues and then declining as the series progressed. In the end she was being abusive to her daughter who couldn't continue to care for her. On the HC facebook (which has a lot of young fans) there was a lot of positive comments from people who had experience of dementia. Thought it was very good that a younger audience got to see a more realistic image of someone having carer breakdown and the Mum being quite unpleasant at times but equally able to fool others outside of the family.