Mum has vascular dementia which has worsened considerably in the last few weeks. She lives alone in sheltered housing but both her doctor and her CPN are now telling me that her welfare and safety will be better served in a care home. She has lost all concept of time and place and rings me at all hours usually between ten and twenty times each day (and night) wanting me to take her "home". Although this is wearing me down and I can't remember when I last had a full nights sleep I still cannot bring myself to move her to a care home. After yet another conversation with her CPN this week I have visited five homes. At the last one I ended up in tears when the manager showed me to her potential room. I still think that she isn't bad enough yet but I guess three professionals can't be wrong. Has anyone else had this experience? Mum can still hold a conversation but there didn't appear to be anyone for her to talk to in the homes I have visited. I'm looking at dementia care, should I be looking at mixed care homes?
Cannot agree to a care home for mum
- Thread starter Elsie54
- Start date
I'm sure many of us reading this know the feeling you describe. When I went into the care home I had decided my aunt should go to, I just cried when I saw the room. It felt so final, and so much not 'her'. I think we all feel our relative isn't as ill as the other people in the care home, and in a way that is true since they will be a mixed group and some will be 'worse' - but it is also the unfamiliarity of it, and the fact that it isn't your Mum's 'home'. Only a few days later, after my aunt had moved in, I felt a lot better about it, and you probably would do too.
On the other hand, I wouldn't let yourself be rushed into moving her if you don't think she needs to be in a care home yet. Even if she moves there, she will probably still be asking to 'go home', so that aspect won't change (though she probably won't have access to a phone, so maybe you will be less disturbed by it..). Is she experiencing other problems at home? Does she go to some kind of daycare?
On the other hand, I wouldn't let yourself be rushed into moving her if you don't think she needs to be in a care home yet. Even if she moves there, she will probably still be asking to 'go home', so that aspect won't change (though she probably won't have access to a phone, so maybe you will be less disturbed by it..). Is she experiencing other problems at home? Does she go to some kind of daycare?
Why are you so against the idea of a care home? They can be a godsend. My mum has been in a home (in the dementia unit) for 8 months now. She made the decision to go in because things were just not working at home for her. Dad was not able to give her the structured environment she needs. The day she went in was a turning point for her and gave her a new lease of life - she has made a point of joining in all the activities, and has made friends. The residents all look out for one another and its a friendly place to visit. Obviously she would rather be at home with dad still - but that can't be. And the care home is absolutely the best place for her at this stage. There are no worries, there are staff to help out with anything and everything, there are always people around & things going on - she said today that the days go quickly. She is having a bit of a dip at the moment - and its so good to know that the staff are looking out for her and keeping her safe. It is a shock to see your own mother losing her abilities, and I have to make the effort to look at things through her eyes rather than my own. What I might see as a really dreary day might actually be all she is up to doing just now. Its all a learning experience.
Please try to be open to the idea that a care home may be a really positive move. If your mum is wanting you to take her "home" then it sounds like her own home is not feeling like home at the moment. Perhaps a safer more supported environment would be a better home for her.
As to dementia care vs mixed - I think it depends how they mix. At mum's home there are two dementia floors and one residential non-dementia. Its the best of both worlds because mum's "home" floor has the level of support she needs - but during the day they tend to hold activities all together & sometimes they spend time on the other floors.
You say "she isnt bad enough yet" - but perhaps it would be kinder to help her make the move now when she is more able to cope with the change and settle. To be blunt - I mean while her short term memory is still good enough for her to be able to settle without everything seeming forever strange.
Have you thought about her going in on a trial basis - "respite" with a view to permanent if it suits (bear in mind it does take a while to settle - so be realistic with your expectations).
Hope it all goes well for you.
Kris
PS - there is a red exclamation mark at the top of my post - No idea why & don't know how to remove it. Please ignore it...
Please try to be open to the idea that a care home may be a really positive move. If your mum is wanting you to take her "home" then it sounds like her own home is not feeling like home at the moment. Perhaps a safer more supported environment would be a better home for her.
As to dementia care vs mixed - I think it depends how they mix. At mum's home there are two dementia floors and one residential non-dementia. Its the best of both worlds because mum's "home" floor has the level of support she needs - but during the day they tend to hold activities all together & sometimes they spend time on the other floors.
You say "she isnt bad enough yet" - but perhaps it would be kinder to help her make the move now when she is more able to cope with the change and settle. To be blunt - I mean while her short term memory is still good enough for her to be able to settle without everything seeming forever strange.
Have you thought about her going in on a trial basis - "respite" with a view to permanent if it suits (bear in mind it does take a while to settle - so be realistic with your expectations).
Hope it all goes well for you.
Kris
PS - there is a red exclamation mark at the top of my post - No idea why & don't know how to remove it. Please ignore it...
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It's very hard, but the trouble is, if you leave it much longer there will probably be some real crisis that will force your hand, and then it will be a case of finding a place in a hurry. And finding anywhere halfway nice that happens to have a room available
can be very difficult.
We put my fil in a 'mixed' care home although his AD was pretty bad by then and his behaviour could be extremely challenging, which was why I simply couldn't cope one to one at home any more. The specialist dementia places we looked at simply wouldn't have done - he was still fit and active and would have gone mad being locked in. However, it took us weeks of weekends to find that place, that not only felt right but would also accept him. And they were wonderful with him, BTW.
I find that in my mother's CH (specialist dementia) the staff are very good at talking to anyone who can still hold a conversation. Though admittedly that's rare - it's more a case of fantasy talk with an 85 year old who tells you her granny and granddad are on their way and they're all going to the seaside. But staff are very good at this, too.
Thank you all for taking the time to reply to me so thoughtfully.
I think the main reason for my reluctance is that my grandfather had AD and died in a CH and my mum has always said she wouldn't want to live in one herself.
She also went in for respite during a crisis last year and it was truly awful (mum was verbally abused by another resident while I was visiting and then two ladies started fighting, whilst there were no care assistants around) so I hear what you are saying about finding somewhere of our choice rather than somewhere available in a hurry.
Mum flatly refuses to go to daycare anymore because she says no one talks to her there but on the other hand she has nothing to occupy herself with at home. She used to love crosswords and jigsaw puzzles but can't do either anymore. She finds it hard to concentrate to read too and is unable to operate the TV herself so no wonder she rings me all the time.
All in all it's not a good situation. I'm self employed and working from home but no work = no income and it's becoming ever more difficult for me to concentrate. I made a huge mistake at a clients a couple of weeks ago because my mobile rang 8 times during the consultation. BTW I have my phone with me all the time for calls diverted from home beause I can usually settle her in one call and I'm worried that if i don't answer she'll wander off and get lost. it's a wonder i have any clients left!
Sorry I'm rambling now but just writing all this down is proving cathartic (even if no one reads this) and is helping me to see that I have to act now so I've resolved to view two more possible CH's next week.
Thank you all again for your advice.
Much love xxx
I think the main reason for my reluctance is that my grandfather had AD and died in a CH and my mum has always said she wouldn't want to live in one herself.
She also went in for respite during a crisis last year and it was truly awful (mum was verbally abused by another resident while I was visiting and then two ladies started fighting, whilst there were no care assistants around) so I hear what you are saying about finding somewhere of our choice rather than somewhere available in a hurry.
Mum flatly refuses to go to daycare anymore because she says no one talks to her there but on the other hand she has nothing to occupy herself with at home. She used to love crosswords and jigsaw puzzles but can't do either anymore. She finds it hard to concentrate to read too and is unable to operate the TV herself so no wonder she rings me all the time.
All in all it's not a good situation. I'm self employed and working from home but no work = no income and it's becoming ever more difficult for me to concentrate. I made a huge mistake at a clients a couple of weeks ago because my mobile rang 8 times during the consultation. BTW I have my phone with me all the time for calls diverted from home beause I can usually settle her in one call and I'm worried that if i don't answer she'll wander off and get lost. it's a wonder i have any clients left!
Sorry I'm rambling now but just writing all this down is proving cathartic (even if no one reads this) and is helping me to see that I have to act now so I've resolved to view two more possible CH's next week.
Thank you all again for your advice.
Much love xxx
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I hope this helps you. My Mum said many many years ago when visiting a bazaar at a nursing home on hearing some of the residents moaning and calling out - please don`t put me in a home like this. My response was to say I couldn`t promise anything as we didn`t know what the future held, but I promised I would if necessary find her a very good home - "nothing but the best for Mum". 18 months ago having not recognised the severity of dementia thinking it was just old age I had to take decisions out of her hands. She lived in a sheltered accommodation, warden controlled scheme where she had lived for 14 years, close to where I live. Major out of character behaviour started as well as going out at night. I couldn`t reason with her, she didn`t want to leave, but I had to move her without her permission for her safety (nothing but the best for Mum).(By the way I`m an only child, so had to do it all myself with the support of my own family). I moved her into a semi-secure EMI unit still close by staffed by carers. She didn`t like it, but felt that if Heather said she had to live there then so be it. Exactly 12 months to the week, crisis - overnight she began to walk and walk - getting out of fire exits, main doors, out in the road. Carers at EMI unit where unable to cope, social services and I paid for one-to-one day care whilst waiting memory clinic medication advice. Eventually told there was no medication they could offer. She was diagnoised in Dec 2010 with cardio-vascular mixed dementia, severe - I had only just got her into the EMI unit!!!Any I tried hard to keep her there organising sensors etc, but social services took over, almost anyway, they drew my attention to the fact that I was imprisoning her, carers kept taking her back to a place she no longer wanted to be in, so I had to move her again. Social services gave me a number of options to look at and thankfully I found a lovely home, just 15 mins drive from me. It`s a specialist secure dementia unit where she can roam freely. She is still on a mission to go home, but also rapidly declining. A weight has been lifted off me. I don`t need to shop for her, worry about her getting out anymore. I visit daily and spend quality time with her. Carers keep me updated and they have a doctor who visits every Monday and sees all the residents. They have involved a dietian,incontinence care and chiropodist. They have a hairdressers. I don`t need to do anything but support Mum and the carers with their care of my precious Mum. There`s about 14 residents at the moment.
No one wants to go into residental care, no one wants to move their loved ones to a residental care, but the driving force needs to be "what is best for Mum/Dad/Brother/Sister etc. Its hell, frightening, heartbreaking but something that HAD to be done for her safety. I couldn`t have looked after her now in the state she is in. It is hard for relatives, we are too emotionally involved, it is still heartbreaking to witness, but I am now free to spend time with my family and go away for short breaks.
I would highly recommend a move to a care home- providing you have visited a number and with gut feeling found the right place.
Sorry this has gone on, but I feel I can give back some support from my experience.
Take care and my thought are with you, as I have worn the t-shirt and understand the dilema! Follow your gut feeling.
bye for now
Heather x
No one wants to go into residental care, no one wants to move their loved ones to a residental care, but the driving force needs to be "what is best for Mum/Dad/Brother/Sister etc. Its hell, frightening, heartbreaking but something that HAD to be done for her safety. I couldn`t have looked after her now in the state she is in. It is hard for relatives, we are too emotionally involved, it is still heartbreaking to witness, but I am now free to spend time with my family and go away for short breaks.
I would highly recommend a move to a care home- providing you have visited a number and with gut feeling found the right place.
Sorry this has gone on, but I feel I can give back some support from my experience.
Take care and my thought are with you, as I have worn the t-shirt and understand the dilema! Follow your gut feeling.
bye for now
Heather x
hello , i can see why you are unsure of a care home i see this everyday at work it seems so final/ mean taking a relative and putting them into one, however from what you say it does sound that its the right decision for your mother. I cant imagine how hard it must be to have to do this for your mum thoughhowever from working in this area i feel people with dementia thats worsening a care home is a positive place for them to be, just imagine the peace of mind you will be able to have knowing your mum is always safe esp at night, and having her personal care etc met. Those i work with have late dementia though and are so vulnerable, but say if they have a fall in our unit, they are likely to be found and helped within minutes safely, however in their own homes this sort of thing becomes alot harder. I see such huge improvements in some individuals after a while of being in the home with us such as their mobility and eating. The home i work in is a lovely friendly place with a high standard of care and also meeting the residents social needs quite often i see they find companionship in one another which is nice . You could always visit as much as you like and take your mother home/days out. I would personally choose a dementia based one as i feel the staff may be better trained and obviously wanting to work with dementia/mental health needs. also i think the standard of care is better in the dementia unit i now work on as we are allocated more staff/time for each resident as its health and safety with dementia. we all have to have mandortary dementia training and so many of us now hold degrees in mental health which wasnt a requirement when i worked in general residential. I feel so sorry for families with someone they love having this awful disease its lovely how much you care BUT you deserve some respite too. Id have a look around alot more homes as yet too and give yourself plenty of choice, ask around and read up on their inspections/ratings.
I hope things work out for you both, your mum is lucky to have you
Lauren x
, i can see why you are unsure of a care home i see this everyday at work it seems so final/ mean taking a relative and putting them into one, however from what you say it does sound that its the right decision for your mother. I cant imagine how hard it must be to have to do this for your mum thoughhowever from working in this area i feel people with dementia thats worsening a care home is a positive place for them to be, just imagine the peace of mind you will be able to have knowing your mum is always safe esp at night, and having her personal care etc met. Those i work with have late dementia though and are so vulnerable, but say if they have a fall in our unit, they are likely to be found and helped within minutes safely, however in their own homes this sort of thing becomes alot harder. I see such huge improvements in some individuals after a while of being in the home with us such as their mobility and eating. The home i work in is a lovely friendly place with a high standard of care and also meeting the residents social needs quite often i see they find companionship in one another which is nice . You could always visit as much as you like and take your mother home/days out. I would personally choose a dementia based one as i feel the staff may be better trained and obviously wanting to work with dementia/mental health needs. also i think the standard of care is better in the dementia unit i now work on as we are allocated more staff/time for each resident as its health and safety with dementia. we all have to have mandortary dementia training and so many of us now hold degrees in mental health which wasnt a requirement when i worked in general residential. I feel so sorry for families with someone they love having this awful disease its lovely how much you care BUT you deserve some respite too. Id have a look around alot more homes as yet too and give yourself plenty of choice, ask around and read up on their inspections/ratings.I hope things work out for you both, your mum is lucky to have you
Lauren x
Hello Elsie, I work from home too as a consultant and know exactly how this stress must be getting to you. When I was trying to find a good CH for my relative I spent hours and hours not doing my work and as a result lost a couple of my longstanding clients.
The only good thing that has come out of this is that Uncle is in a very good home now and safe and extremely well looked after. There are good homes out there although they are difficult to identify. If I can be of any assistance do please send me a PM.
Take care xx
It is such a hard decision, I just want to say Care Homes can be the right answer, and we have been lucky, and the small local home my Mother lives in has worked well for us. In the early days Mum fought against her Az, and us, but now she is much happier, and often when I visit is singing along to music, even though she can not find the words, she can still hold a tune and make a lovely sound!! It is not the Mum of old who never sat still, was always busy but at least she is happy in herself and well cared for so we are able to enjoy our time with her visiting and taking her out. Mum cared for my Grandmother at home, so it was hard not to do the same for her, we tried it but in the end it was not working.
Good luck with your seach, keep looking till you find one you are happy with, we looked at so many till we were happy, then of course there was a waiting list - but the wait was worthwhile.
Good luck with your seach, keep looking till you find one you are happy with, we looked at so many till we were happy, then of course there was a waiting list - but the wait was worthwhile.
