Why are carers left with ALL the responsibility and left having to look/ask for everything?

[canary]

it was a trained counsellor that was really having problems working it out

Yes, Ive had problems with a trained counsellor who didnt understand about dementia and chided me because (as she said) "everything revolves around your husband and you are constantly thinking about him all day"
Well yes, thats how it is with dementia.

 

[jennifer1967]

Oh Lordy, that’s not good. I think it’s so far outside the experience of most people. I wish I knew how to address this.
Warmest, Kindred.

she had a big problem with capacity and dementia and i cant just get carers in when he has said no. i should be able to ignore his requests and do as i like.

 

[jennifer1967]

Yes, Ive had problems with a trained counsellor who didnt understand about dementia and chided me because (as she said) "everything revolves around your husband and you are constantly thinking about him all day"
Well yes, thats how it is with dementia.

yes @canary and said basically the same thing. the pain team so really nothing they can do as im a full-time sole carer so have to do things.along with everything else this week, there was a big message that i dont count. she asked what was the worst that could happen if in left him alone. i just said a fire because he leaves the hot plate on and can easily leave a teatowel on it. she asked about drawing up a rota and i just said hed forget it

 

[kindred]

yes @canary and said basically the same thing. the pain team so really nothing they can do as im a full-time sole carer so have to do things.along with everything else this week, there was a big message that i dont count. she asked what was the worst that could happen if in left him alone. i just said a fire because he leaves the hot plate on and can easily leave a teatowel on it. she asked about drawing up a rota and i just said hed forget it

Oh yes, draw up a rota, write things in big letters, use a talking clock, heres an iPad with an app ... I know. And in the face of incontinence, aggression, destructive behaviour.
The social services were brutal to me, asking well if you don’t look after him, who do you think will??
and worse.
Thank God for this forum where we do matter.
With love, Kindredx

 

[imthedaughter]

And the majority of those who remain still see Alz as some kind of dotty but loveable ageing process-
Yes, it comes to that again. The perspective of "the dotty" but happy Alzheimer's /dementia person. Encouraged by websites and pictures of happy contented Alz patient. I find that so so frustrating and DISHONEST. Our experinece as untrained carers, on the front lines of the disease.

I find this quite difficult as I totally agree, but am guilty of portraying my dad like this (and he is, at times, but other times he's a right grump and has even attempted to be violent). I do this because even though my dad has made several poor decisions and not always been a nice, I don't want people to think he's a horrible person, because before he was unwell, he did try to be a good man.
The full view of the disease needs to be highlighted more. The public doesn't understand it at all.

 

[kindred]

I find this quite difficult as I totally agree, but am guilty of portraying my dad like this (and he is, at times, but other times he's a right grump and has even attempted to be violent). I do this because even though my dad has made several poor decisions and not always been a nice, I don't want people to think he's a horrible person, because before he was unwell, he did try to be a good man.
The full view of the disease needs to be highlighted more. The public doesn't understand it at all.

Completely understand. What would we like the public to understand? I’m stumped thinking about this. I wanted to start it off, so how about that it is a relentless illness and kindness and offers of help are much appreciated.
Kindredx

 

[Rosettastone57]

I think that unless a person sees dementia "in action" for themselves, they simply have no idea what is involved. As others have said, it's not the sweet old lady who is a bit forgetful, who is "living well with dementia ".

 

[jennifer1967]

problem is if the carer needs other medical care, they dont understand the constraints it causes and decide the time is not right or only think of that medical problem rather than seeing the bigger picture and helping with all not just the selected target area of the carer

 

[Banjomansmate]

Even “carers” groups don’t seem to understand what goes on with dementia. I attended a Carers afternoon tea held at the local GP surgery. It gave me chance to meet the local Alzheimer’s Society representative and several other ladies who ran the group. One told me that “Once you get carers in to help your PWD you can then just visit as a friend again”. She obviously had never had to take a PWD to hospital and Dr’s appointments, make sure they took their medication at the correct times as well as checking the carers were coming on time and doing all they were supposed to do while coping with a recalcitrant subject. Not forgetting the phone calls at all hours of the day and night, or the good ones when you phone but he has no idea how to answer the call so you have to drive 10 miles to make sure he is OK because he’s knocked the receiver off and doesn’t know what to do next. Then you have to do his shopping because if you order on line he cannot put things away safely or could well have decided to go out when the delivery is due.
Even caring from a distance is a 24 hr job and takes up great chunks of your life, you never switch off but other people don’t understand that.

 

[lemonbalm]

I've been hesitating over posting on this thread and I think perhaps that is part of the problem. We are often hesitant to say what our loved ones with dementia are really like. It feels like some sort of betrayal. I wonder if there is a director brave enough to do an ER type series based around dementia, showing the very worst of it, what carers go through, what the people with dementia go through, what staff, residents and visitors in dementia care homes go through. I'm not sure people could watch it or, if they have no experience of dementia, whether they would actually believe some of it. Does anyone really want to watch a person who is so tormented that they scream like a wounded fox, or think everyone who is trying to help them is trying to kill them? I doubt it.

 

[imthedaughter]

Completely understand. What would we like the public to understand? I’m stumped thinking about this. I wanted to start it off, so how about that it is a relentless illness and kindness and offers of help are much appreciated.
Kindredx

I think people don't understand
- how much it takes over families lives, splits families and causes trauma far beyond the patient - often without the knowledge of the patient
- memory loss is not just memories. It's how to tie your shoes, what a plate is, where it goes, how to clean your teeth. Everything. Forgetting your grandson's name is just the start of it
- that it is terminal and HOW it is terminal
- different kinds of dementia and how they may present
- cause is not fully known - slightly sick of people assuming my dad was abusing alcohol and that caused it!
- PWD can be confused, violent, happy, sad, depressed, content, bored, impulsive - all the things those without dementia can be, but they may have less control over these feelings and moods than neurotypical adults and they may well not be able to use or learn coping strategies to deal with the negative feelings or impulses
- there is no cure. Things which 'help' do not cure, won't help everyone and may not help anyone for very long e.g. fiddle muffs, dolls
- Learning to do new things is very hard, potentially impossible for those with certain types of dementia. Therefore, rotas, lists, whiteboards, clocks, signs etc - all the things we would usually use to help us cope with the day to day will not work - or not work for very long. My dad used a calendar until he forgot where to put appointments and then what day it was.

 

[JC51]

Hello @JC51 The forget me not is the 'logo' of the Alzheimer's Society and their shop has various forget me not items available, including several lapel badges: https://shop.alzheimers.org.uk/inde...earch=forget+me+not&description=true&page=all

I was thinking more of a coloured enamel type, along the lines of the poppy badges.

 

[JC51]

I've been hesitating over posting on this thread and I think perhaps that is part of the problem. We are often hesitant to say what our loved ones with dementia are really like. It feels like some sort of betrayal. I wonder if there is a director brave enough to do an ER type series based around dementia, showing the very worst of it, what carers go through, what the people with dementia go through, what staff, residents and visitors in dementia care homes go through. I'm not sure people could watch it or, if they have no experience of dementia, whether they would actually believe some of it. Does anyone really want to watch a person who is so tormented that they scream like a wounded fox, or think everyone who is trying to help them is trying to kill them? I doubt it.

I think it would be a brilliant way to get it across to people, including professionals and hopefully the government MP’s. The real picture is what needs to be seen.

 

[JC51]

Hello @JC51 The forget me not is the 'logo' of the Alzheimer's Society and their shop has various forget me not items available, including several lapel badges: https://shop.alzheimers.org.uk/inde...earch=forget+me+not&description=true&page=all

I’ve just found the enamel badge, will be ordering one in a minute. Thanks for the link.

 

[kindred]

I think it would be a brilliant way to get it across to people, including professionals and hopefully the government MP’s. The real picture is what needs to be seen.

I do agree. Thank you for all this. Like I said, I had a terrible time as sole carer. It was torment and although my husband is dead, I am still suffering the after effects of what I went through. I come on here because I feel I am among others who understand. Yes, the real picture needs to be seen. Thank you. Warmest, Kindred

 

[jennifer1967]

i dont think we are doing us any favours by hiding it. because its hidden thats where the cutesy pictures come from because people are sensitive of the realities. there many other unpalatable truths that are out there and are now talked about more, than a few years ago when they were taboo. a whole list, domestic violence, child abuse, racism, the pride movement and cancer. its taken them to be highlighted for misconceptions to be broken.

 

[kindred]

i dont think we are doing us any favours by hiding it. because its hidden thats where the cutesy pictures come from because people are sensitive of the realities. there many other unpalatable truths that are out there and are now talked about more, than a few years ago when they were taboo. a whole list, domestic violence, child abuse, racism, the pride movement and cancer. its taken them to be highlighted for misconceptions to be broken.

I so agree. How will we start to not hide it?
Kindredx

 

[jennifer1967]

I so agree. How will we start to not hide it?
Kindredx

i suppose like all the other issues, publicity, talk, realistic posters, they show residents in care homes smiling now the visiting is on the agenda. need a camera into a carers home to see what they do in a day. not through rose-coloured glasses. other than that @kindred im open to suggestions. when i did voluntary work many moons ago, we made a video to show the difficulties in raising children in tower blocks. they built more houses and did empty the blocks especially overcrowding and change the dangerous windows.
when i did interview weith city council, they were so surprised the difficulties that carers have to go through.

 

[canary]

I so agree. How will we start to not hide it?
Kindredx

Thats the difficult bit. We are all too tired to campaign and also, @lemonbalm mentioned the feeling of betrayal which is very real. So many people have posted on here that they didnt want to even tell doctors about what their PWD is really like because it would be a betrayal.

I think one of the stumbling blocks is that it is the families who have to tell the stories. With all the other things - domestic abuse, cancer, racism, gay rights etc, the person can tell their own story. They can say "this is what happened to me and this is what is still happening", but most people with dementia cannot - and the ones that can are not representative of the vast majority and tend to fit the "living well with dementia" narrative.

So its left to us carers, with all our feelings of guilt, betrayal and failure. So is it any surprise that we say nothing, except to other people who are going through the same thing?

 

[jennifer1967]

Thats the difficult bit. We are all too tired to campaign and also, @lemonbalm mentioned the feeling of betrayal which is very real. So many people have posted on here that they didnt want to even tell doctors about what their PWD is really like because it would be a betrayal.

I think one of the stumbling blocks is that it is the families who have to tell the stories. With all the other things - domestic abuse, cancer, racism, gay rights etc, the person can tell their own story. They can say "this is what happened to me and this is what is still happening", but most people with dementia cannot - and the ones that can are not representative of the vast majority and tend to fit the "living well with dementia" narrative.

So its left to us carers, with all our feelings of guilt, betrayal and failure. So is it any surprise that we say nothing, except to other people who are going through the same thing?

i totally agree @canary i asked my gp whether it was vascular dementia my husband had. direct because he had given his permission. she was a bit stunned and said yes then referred to memory clinic. she said it was definitely dementia and he had MRI before when he had a TIA. im lucky i have the knowledge to be able to challenge but its still hard