Help, getting desperate

bdmid

Registered User
Dec 4, 2013
36
0
73
Bristol
I first joined the AS forum last year following diagnosis of my 91yr old mum with vascular dementia. We suspected this some 18months previously. Now it has been changed to mixed dementia. Caring has been difficult as mum always was a very strong, opinionated person who liked to be in control, and is now showing as aggression towards myself, and my brother who Shares the caring with me. She has reached the stage where most of her belongings are 'not mine, their like mine, but they have been swapped by them' , we think she means us. This is now happening with her own furniture. We think she is probably now at around stage 5, but she still thinks she's fine and nothing wrong with her? We are almost on our knees, and at the end of our tether,. Last month we actually got her into an extra care sheltered housing very close to where she lives, we had to stay with her 24hrs a day as she created so much, shouting and screaming 'this is not my home, what have you done to my home' on and on constantly, totally refused any carer input and so out of sheer exhaustion moved her back home. Once home, why have you brought me back!! We had an emergency assessment, the outcome being she does not have the capacity to understand her own care/home needs. We feel the only choice left is a care home, but As Mum is classed as a self funder, we have been given a list of care homes and told to sort it out ourselves, but we know it's going to be the same reaction as the ECSH, we just don't know what to do for the best. Any advice gratefully received.
 

Patricia Alice

Registered User
Mar 2, 2015
179
0
I first joined the AS forum last year following diagnosis of my 91yr old mum with vascular dementia. We suspected this some 18months previously. Now it has been changed to mixed dementia. Caring has been difficult as mum always was a very strong, opinionated person who liked to be in control, and is now showing as aggression towards myself, and my brother who Shares the caring with me. She has reached the stage where most of her belongings are 'not mine, their like mine, but they have been swapped by them' , we think she means us. This is now happening with her own furniture. We think she is probably now at around stage 5, but she still thinks she's fine and nothing wrong with her? We are almost on our knees, and at the end of our tether,. Last month we actually got her into an extra care sheltered housing very close to where she lives, we had to stay with her 24hrs a day as she created so much, shouting and screaming 'this is not my home, what have you done to my home' on and on constantly, totally refused any carer input and so out of sheer exhaustion moved her back home. Once home, why have you brought me back!! We had an emergency assessment, the outcome being she does not have the capacity to understand her own care/home needs. We feel the only choice left is a care home, but As Mum is classed as a self funder, we have been given a list of care homes and told to sort it out ourselves, but we know it's going to be the same reaction as the ECSH, we just don't know what to do for the best. Any advice gratefully received.

Hi, reading your story mirrors ours. My mum is 90 and has mixed dementia with evening sundowners, where she becomes more agitated to the point of aggression. She says that everything is 'hers' and has become very possessive over any item. She said the cardigan my aunty was wearing was hers (my mom is a 14 and my aunty a size 8), but she made her take it off and she put it on!!

We moved mom into care as we were on our knees caring and working. Her head is still in the house she moved out of years ago and we cannot change her thinking. She shouts no, no, no, I do not live here.

We said we would never move her to a home, but our health was suffering too. The place we chose is modern and light (we saw some very dark and dingy places), they do activities most days, have a hairdressing salon and the staff are great.

Go and look around, even if you decide not to go there yet, and never make an appointment, just turn up, if the home is good they will be happy to show you around there and then. I know 100 per cent what you are going through and how you feel.
 

Witzend

Registered User
Aug 29, 2007
4,283
0
SW London
This is very difficult for you. I can only suggest that you go and look at as many care homes as you can - make sure they will take people with dementia - and be very honest about your mother.

We had to get our mother to her care home by deception - there was no other way since she would never have agreed to go, and why would she, when according to her there was nothing wrong with her? But she was very bad by then. Her GP was helpful in prescribing Valium to make her more docile on the day, and to be honest I don't think we'd have got her out of the door without it, since for ages she had been very reluctant to leave the house at all.

Maybe her GP could prescribe something to help calm her during the settling in period?

We had never involved social services at all - we found the CH ourselves, after an awful lot of looking.

It is usually considered best not to tell the person they are going in for good - they are just there for a while because 'the doctor says' they need to build their strength up, or while their meds are sorted out, or while builders/plumbers/decorators are making the house uninhabitable - basically any 'love lie' you can think of that will work. If the person's short term memory is already very bad they are unlikely to remember that you said the same before, or to have any idea of how long they have been there.

Good luck, and do keep is posted. I hope someone else will be along with more/better help.
 

bdmid

Registered User
Dec 4, 2013
36
0
73
Bristol
This is very difficult for you. I can only suggest that you go and look at as many care homes as you can - make sure they will take people with dementia - and be very honest about your mother.

We had to get our mother to her care home by deception - there was no other way since she would never have agreed to go, and why would she, when according to her there was nothing wrong with her? But she was very bad by then. Her GP was helpful in prescribing Valium to make her more docile on the day, and to be honest I don't think we'd have got her out of the door without it, since for ages she had been very reluctant to leave the house at all.

Maybe her GP could prescribe something to help calm her during the settling in period?

We had never involved social services at all - we found the CH ourselves, after an awful lot of looking.

It is usually considered best not to tell the person they are going in for good - they are just there for a while because 'the doctor says' they need to build their strength up, or while their meds are sorted out, or while builders/plumbers/decorators are making the house uninhabitable - basically any 'love lie' you can think of that will work. If the person's short term memory is already very bad they are unlikely to remember that you said the same before, or to have any idea of how long they have been there.

Good luck, and do keep is posted. I hope someone else will be along with more/better help.

Up until now her GP has refused medication on the grounds that it can make her aggression worse. Unofficially too tho, her GP said that 'love lies' would probably be the only way to get her into a care home. It's reassuring to hear others have had to be a bit devious, for the right reasons, as we are feeling so guilty that we are now struggling to care for her and guilty putting her into a home, but we don't see any other way at the moment.
 

bdmid

Registered User
Dec 4, 2013
36
0
73
Bristol
Hi, reading your story mirrors ours. My mum is 90 and has mixed dementia with evening sundowners, where she becomes more agitated to the point of aggression. She says that everything is 'hers' and has become very possessive over any item. She said the cardigan my aunty was wearing was hers (my mom is a 14 and my aunty a size 8), but she made her take it off and she put it on!!

We moved mom into care as we were on our knees caring and working. Her head is still in the house she moved out of years ago and we cannot change her thinking. She shouts no, no, no, I do not live here.

We said we would never move her to a home, but our health was suffering too. The place we chose is modern and light (we saw some very dark and dingy places), they do activities most days, have a hairdressing salon and the staff are great.

Go and look around, even if you decide not to go there yet, and never make an appointment, just turn up, if the home is good they will be happy to show you around there and then. I know 100 per cent what you are going through and how you feel.


The ECSH was ideal for her with activities,days out etc. how long ago did you get her into the care home, and has she settled at all, it will be useful to know what's ahead of us.
 

Patricia Alice

Registered User
Mar 2, 2015
179
0
The ECSH was ideal for her with activities,days out etc. how long ago did you get her into the care home, and has she settled at all, it will be useful to know what's ahead of us.

We moved mum on 7th Jan this year, she had been in hospital for 4 weeks prior to that over Xmas and New Year because of her deteriorating mood/aggression where they experimented with meds.

The psychiatrist has told us my mom has virtually zero memory and every day we have to re-write the page.

She has kind of settled, some days good, some days bad, sometimes it depends on which staff are on, some are very chatty and she responds to this well, and others leave them to sit/sleep, this she finds hard and gets bored easily.

I would advise you to look around as many as possible, write a list of questions such as meal times, is there a choice, activities, what do they do and how often, can they go to bed what time they want/stay up, if GP/nurse visits regularly, can you be involved in her care etc. Anything you can think of that will ease your mind.

It is not a step we took lightly. We were advised not to visit for one week and then not to go everyday so this gives the home a chance to settle them in.

What I have had to take on board is that mom's memory is now way back in the past, so you have to tell little white lies as they do not remember that you didn't visit for 2 - 3 days.

I am afraid it is the family who feel the pain as the one with dementia is really in their own bubble. You have to learn to let go and let others take on the care and you can go back to being a son/daughter etc and enjoy the visits instead of the caring.

I hope this helps, but please ask more if you need to.