unhappy in care home - advice please

Stripey3

Registered User
May 29, 2019
35
0
hi everyone,
Just stumbled across this forum and so glad I did. It’s a fab resource for all those affected by this awful disease.
Looking for some help/advice please.
Mum is in a care home and has been since March. She took a while to settle which is only to be expected and got through it. All appeared to be fine for a while. However, she is now unhappy, frustrated and bored and wishing she could be somewhere else. She likes the care home and gets on with the staff but not the other residents in her unit. Whilst she has advanced dementia and struggles with communication, she is very aware of her surroundings and alert. She is in a unit with others who all have dementia. All have lost their ability to communicate or inter act with each other or the staff. They sit around in the unit and stare, a familiar sight in care homes I know. There are activities laid on but they choose not to participate. Mum did join in but of late she doesn’t seem interested. I think if she had others around her who joined in she would be happy to join in. She has lost the art of making conversation but does respond as best she can if she is spoken too. Because she has nothing to keep her occupied she watches what goes on around her and takes it all in. She can describe each person, ‘he doesn’t speak’ she doesn’t do anything, sits there all day, ‘she really is not very nice.’ What she says is correct but she doesn’t understand they are like they are because they all have dementia of one type or another as does she which she doesn’t recognise or acknowledge. There are other units within the home with a mixture of those suffering from early onset dementia to advanced dementia. They are free to mingle but it is difficult to walk into another unit and mix when you have lost your social skills and the art of conversation. The situation is making Mum very unhappy and she has become withdrawn and is ‘wishing she could be somewhere else or ‘come home with me.’ It breaks my heart to hear her say that and feel guilty when I have to leave her at the end of my visit.
I’m struggling with the whole dementia journey at the moment and still feel guilty for placing Mum into the home even though I know deep down it was in her best interests as she needed 24 hr care.
Any advice on how to deal with Mum and approach the staff at the care home would be really appreciated.
Thanks for reading x
 

Rosettastone57

Registered User
Oct 27, 2016
1,839
0
hi everyone,
Just stumbled across this forum and so glad I did. It’s a fab resource for all those affected by this awful disease.
Looking for some help/advice please.
Mum is in a care home and has been since March. She took a while to settle which is only to be expected and got through it. All appeared to be fine for a while. However, she is now unhappy, frustrated and bored and wishing she could be somewhere else. She likes the care home and gets on with the staff but not the other residents in her unit. Whilst she has advanced dementia and struggles with communication, she is very aware of her surroundings and alert. She is in a unit with others who all have dementia. All have lost their ability to communicate or inter act with each other or the staff. They sit around in the unit and stare, a familiar sight in care homes I know. There are activities laid on but they choose not to participate. Mum did join in but of late she doesn’t seem interested. I think if she had others around her who joined in she would be happy to join in. She has lost the art of making conversation but does respond as best she can if she is spoken too. Because she has nothing to keep her occupied she watches what goes on around her and takes it all in. She can describe each person, ‘he doesn’t speak’ she doesn’t do anything, sits there all day, ‘she really is not very nice.’ What she says is correct but she doesn’t understand they are like they are because they all have dementia of one type or another as does she which she doesn’t recognise or acknowledge. There are other units within the home with a mixture of those suffering from early onset dementia to advanced dementia. They are free to mingle but it is difficult to walk into another unit and mix when you have lost your social skills and the art of conversation. The situation is making Mum very unhappy and she has become withdrawn and is ‘wishing she could be somewhere else or ‘come home with me.’ It breaks my heart to hear her say that and feel guilty when I have to leave her at the end of my visit.
I’m struggling with the whole dementia journey at the moment and still feel guilty for placing Mum into the home even though I know deep down it was in her best interests as she needed 24 hr care.
Any advice on how to deal with Mum and approach the staff at the care home would be really appreciated.
Thanks for reading x

My mother-in-law was like this, always saying it was a "living hell" in the home. Always complaining about staff and residents, saying nothing to do. The home had a Facebook page and I noticed my mother-in-law was in one of their photos smiling and taking part in an activity. The staff of course always had a different version from mother-in-law . Your mum hasn't been in the home very long, it can take months to settle
.
 

Shedrech

Registered User
Dec 15, 2012
12,649
0
UK
hello @Stripey3
a warm welcome to DTP
I was going to suggest that maybe your mum spend some of her time on another floor/in another lounge, but then read that that's been thought of
do just have a chat with the senior on your mum's unit, I found it really helped to simply talk things through with the staff on dad's floor ... it may be that as Rosettastone 57 says, your mum is settled and pretty content but uses her time with you to 'complain', quite a few members have discovered this ... maybe even visit one day but don't let your mum know you are there, so you can see for yourself how she is
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
My mum was settled in her care home, had made friends there and joined in the activities, but as her dementia advanced, every time I visited she would say "lets get out of here" "Its a mad house in here - lets go". I used to take her out, but often she would want to go back to her care home fairly soon afterwards. I came to the conclusion that she thought that if she went somewhere else then she would leave all the confusion and frustration of dementia behind. She didnt of course - it just went with her, so she wanted to go back to the security of her care home.
 

Stripey3

Registered User
May 29, 2019
35
0
Thanks everyone. I appreciate you taking the time to respond.
It’s a difficult journey for all involved and sometimes the personal guilt you carry for placing your loved one in a care home is heavy load to carry.
 

Shedrech

Registered User
Dec 15, 2012
12,649
0
UK
hi @Stripey3
sadly, it just always feels that whatever we do or whatever care we arrange it is never enough - it's so hard to accept that we just cannot 'make it better', dementia doesn't work like that, so the guilt seeps in
I taught myself to accept that often 'good enough' is as good as it gets
that's not to say that it's right to accept a situation that might be improved, so it's good to check up on your mum's situation and discuss any of your concerns with the staff - I found if I had a friendly chat with them each time I visited dad, just to say hello and how's things and let them know what I was pleased with, it meant I could raise any concerns more easily and we felt mors like a team supporting dad
whatever else, keep posting, it helps to share ...
 

Jaded'n'faded

Registered User
Jan 23, 2019
5,258
0
High Peak
I get this with every visit. Apparently, there is no food, the staff never come or help her, she does everything for herself and of course, everyone there is beneath her. She is bored, bored, bored. They have sacked her from her job there (where they give you the numbers and you put all your things on the board. o_O She has to explain to the other 'imbeciles' how to do it because they can't even read. :rolleyes:)

Sometimes I think you have to be satisfied with what you can do and not worry too much about the rest. I can't make my mum better, I can't change the fact she's tired after 20 steps with her frame. I can't change all her delusions or enable her to go out shopping in Manchester. (Her greatest desire.)

What I can do is keep her safe and keep visiting and reassuring. Making her happy is way beyond me so I have to accept that. (But nothing I do has ever made her happy so no change thereo_O)

You do what you can and hope for the best.
 

Helly68

Registered User
Mar 12, 2018
1,685
0
As my Mum frequently says, when I visit her in her care home, "well (with a significant nod and frown to other residents minding their own business, and staff, in her loud, carrying, drama-school voice - "they are all completely mad".
Quite.
You can only try and find the least worst option (awful as that may sound) and try to make it work as well as it can.
 

Sarasa

Volunteer Host
Apr 13, 2018
7,195
0
Nottinghamshire
My mother has been in a home for three weeks and isn't very happy either. In lots of ways my mum like yours is very capable, but because she has tried to escape and can have meltdowns she is on a secure floor, which means she can't access the areas with more going on without a carer in tow. She is hating that, and the fact she can't just go out for a walk or hop on a bus. I can see her point of view, and when she has settled a bit more she will go out on trips, at the moment they can't trust her not to do a runner!
I'm happy with the home and so I'm ignoring her comments about awful things that have been done to her, though I'm still keeping my eyes open just in case.
 

Kaz70

Registered User
May 17, 2018
13
0
Hi @Stripey3
This sounds just like my mum, she went into her care home in October and took a while to settle. She used to get involved with all the activities but now doesn’t seem to, when I took her to take part in an activity the other day she wouldn’t stay because she didn’t know anyone, I don’t know how you get round that one. Although she remembers the same woman every time that she doesn’t like. She has always been very sociable but is a follower so I can see where she needs her friends to take part comes from.

We always take her out a couple of times a week but the last couple of weeks she has been very reluctant to go back into the care home and last week a member of staff had to come out to get her!

It’s hard but I have to remember she is safe & being looked after. Is this the next stage coming along or does she save these moans for when we are there visiting?

I think I’m going to ask the home about her medication as when she first went in they said it wasn’t good for her to be on donepezil for long but they haven’t mentioned it since, they aren’t the quickest to react and I’m not good at pestering them!
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
We always take her out a couple of times a week but the last couple of weeks she has been very reluctant to go back into the care home and last week a member of staff had to come out to get her!
It may be that you are taking her out for too long. Although mum loved going out she couldnt cope for too long and as time went on she could only go out for shorter and shorter periods. Eventually I couldnt take her out at all.

In mums case the anxiety meant that she wanted to go back to her care home, but other people find that the anxiety makes the person with dementia not want to go back. Try taking her out for shorter periods, but if it carries on, it may be that unfortunately, she can no longer go out.
 

Kaz70

Registered User
May 17, 2018
13
0
It may be that you are taking her out for too long. Although mum loved going out she couldnt cope for too long and as time went on she could only go out for shorter and shorter periods. Eventually I couldnt take her out at all.

In mums case the anxiety meant that she wanted to go back to her care home, but other people find that the anxiety makes the person with dementia not want to go back. Try taking her out for shorter periods, but if it carries on, it may be that unfortunately, she can no longer go out.

Thanks for that @canary, I will give that a try and see how we get on.
 

Canadian Joanne

Registered User
Apr 8, 2005
17,710
0
70
Toronto, Canada
I think I’m going to ask the home about her medication as when she first went in they said it wasn’t good for her to be on donepezil for long but they haven’t mentioned it since, they aren’t the quickest to react and I’m not good at pestering them!

I don't know why the home would say that. My mother was on donepezil for a few years. She was switched to memantine simply because her disease had progressed. I was never told that she shouldn't be on donepezil for a long time. Perhaps they have another reason?
 

Kaz70

Registered User
May 17, 2018
13
0
I don't know why the home would say that. My mother was on donepezil for a few years. She was switched to memantine simply because her disease had progressed. I was never told that she shouldn't be on donepezil for a long time. Perhaps they have another reason?

I think it was because of the ‘sun downing’ she was experiencing
 

Canadian Joanne

Registered User
Apr 8, 2005
17,710
0
70
Toronto, Canada
@Kaz70, that still seems a bit odd to me. Sundowning is a common feature of AD. At the very beginning of my mother's illness, when everything was new and horrible, I used to refer to my mother's 'witching hour'. But I haven't seen any reference to sundowning being a common side effect.

This is only one person's story but my friend's mother was taken off her AD medication (can't remember if it was donepezil or memantine) but she suffered a swift decline in a month and a half. She was put back on but did not return to the level she had been at prior to the change. Seeing this, my sister and I were determined that my mother be kept on her AD meds as long as she was physically able. She took them until a week before she died.

Please speak to the home and go over everything as thoroughly as possible. If YOU are satisfied with the reasoning, then go ahead. Mine is only one example.
 

Kaz70

Registered User
May 17, 2018
13
0
@Kaz70, that still seems a bit odd to me. Sundowning is a common feature of AD. At the very beginning of my mother's illness, when everything was new and horrible, I used to refer to my mother's 'witching hour'. But I haven't seen any reference to sundowning being a common side effect.

This is only one person's story but my friend's mother was taken off her AD medication (can't remember if it was donepezil or memantine) but she suffered a swift decline in a month and a half. She was put back on but did not return to the level she had been at prior to the change. Seeing this, my sister and I were determined that my mother be kept on her AD meds as long as she was physically able. She took them until a week before she died.

Please speak to the home and go over everything as thoroughly as possible. If YOU are satisfied with the reasoning, then go ahead. Mine is only one example.

I’m supposed to be having a care review in the next couple of weeks so I will ask if mum needs a medication review and see what they say.
 

J53

Registered User
Oct 9, 2018
46
0
hi everyone,
Just stumbled across this forum and so glad I did. It’s a fab resource for all those affected by this awful disease.
Looking for some help/advice please.
Mum is in a care home and has been since March. She took a while to settle which is only to be expected and got through it. All appeared to be fine for a while. However, she is now unhappy, frustrated and bored and wishing she could be somewhere else. She likes the care home and gets on with the staff but not the other residents in her unit. Whilst she has advanced dementia and struggles with communication, she is very aware of her surroundings and alert. She is in a unit with others who all have dementia. All have lost their ability to communicate or inter act with each other or the staff. They sit around in the unit and stare, a familiar sight in care homes I know. There are activities laid on but they choose not to participate. Mum did join in but of late she doesn’t seem interested. I think if she had others around her who joined in she would be happy to join in. She has lost the art of making conversation but does respond as best she can if she is spoken too. Because she has nothing to keep her occupied she watches what goes on around her and takes it all in. She can describe each person, ‘he doesn’t speak’ she doesn’t do anything, sits there all day, ‘she really is not very nice.’ What she says is correct but she doesn’t understand they are like they are because they all have dementia of one type or another as does she which she doesn’t recognise or acknowledge. There are other units within the home with a mixture of those suffering from early onset dementia to advanced dementia. They are free to mingle but it is difficult to walk into another unit and mix when you have lost your social skills and the art of conversation. The situation is making Mum very unhappy and she has become withdrawn and is ‘wishing she could be somewhere else or ‘come home with me.’ It breaks my heart to hear her say that and feel guilty when I have to leave her at the end of my visit.
I’m struggling with the whole dementia journey at the moment and still feel guilty for placing Mum into the home even though I know deep down it was in her best interests as she needed 24 hr care.
Any advice on how to deal with Mum and approach the staff at the care home would be really appreciated.
Thanks for reading x
You are right it's an awful disease. Can you put your mums name down to be moved to another unit? If she is happy at the home I wouldn't move her it could make things worse do they have an activity coordinator? Maybe having a word about doing something your mum loved.
 

Helly68

Registered User
Mar 12, 2018
1,685
0
Care home reviews are very useful. If you want to discuss medications, it helps to check that a Community Matron or similar will be present or can be asked for advice before the meeting.

In terms of joining in activities, initially Mummy and I went out for coffee quite a lot, but at the start I also encouraged her to take part in care home activities. At the start this meant I did them too - I felt a bit silly, but Mummy was aware enough then that if I didn't do them, she might have taken this as a sign that she shouldn't either. It also gave me a chance to see how she interacted. She isn't able to take part much now, but she did really enjoy the activities once she settled in.

Mummy also like to "push the boundaries" and so would accompany me to the outer door each time I left. Once this started, a member of staff was usually on hand to make sure she didn't abscond. I don't think she really wanted to go home, I think she , not unreasonably wanted to see how far she could get her own way.
 

SueKB

New member
Jun 4, 2019
2
0
hi everyone,
Just stumbled across this forum and so glad I did. It’s a fab resource for all those affected by this awful disease.
Looking for some help/advice please.
Mum is in a care home and has been since March. She took a while to settle which is only to be expected and got through it. All appeared to be fine for a while. However, she is now unhappy, frustrated and bored and wishing she could be somewhere else. She likes the care home and gets on with the staff but not the other residents in her unit. Whilst she has advanced dementia and struggles with communication, she is very aware of her surroundings and alert. She is in a unit with others who all have dementia. All have lost their ability to communicate or inter act with each other or the staff. They sit around in the unit and stare, a familiar sight in care homes I know. There are activities laid on but they choose not to participate. Mum did join in but of late she doesn’t seem interested. I think if she had others around her who joined in she would be happy to join in. She has lost the art of making conversation but does respond as best she can if she is spoken too. Because she has nothing to keep her occupied she watches what goes on around her and takes it all in. She can describe each person, ‘he doesn’t speak’ she doesn’t do anything, sits there all day, ‘she really is not very nice.’ What she says is correct but she doesn’t understand they are like they are because they all have dementia of one type or another as does she which she doesn’t recognise or acknowledge. There are other units within the home with a mixture of those suffering from early onset dementia to advanced dementia. They are free to mingle but it is difficult to walk into another unit and mix when you have lost your social skills and the art of conversation. The situation is making Mum very unhappy and she has become withdrawn and is ‘wishing she could be somewhere else or ‘come home with me.’ It breaks my heart to hear her say that and feel guilty when I have to leave her at the end of my visit.
I’m struggling with the whole dementia journey at the moment and still feel guilty for placing Mum into the home even though I know deep down it was in her best interests as she needed 24 hr care.
Any advice on how to deal with Mum and approach the staff at the care home would be really appreciated.
Thanks for reading x

This is similar to my mum. After a 3 month spell in hospital my mum was put on medication for Alzheimer's although she hasn't had a formal diagnosis. She was very confused and kept wandering. The hospital said she couldn't live on her own so she moved into a residential care home which is what the hospital said was the most appropriate for her. She isn't happy and wants to move back home. She says she is lonely and bored at the home but she won't mix with the other residents and won't join in any activities, she just shuts herself away in her room. The staff are lovely and pop in to check she is ok throughout the day and she does like the staff. We take her out as often as possible but whatever we do she is still unhappy.
 

imthedaughter

Registered User
Apr 3, 2019
944
0
I sympathise - with my dad now in care home I know how much you want them to be happy, if that's possible. I don't know if this will help but Dad tells me all the other residents are crackers and noisy and come into his room uninvited etc - but I've seen him accidentally go into someone's room thinking it was a living room and he plays his piano so isn't exactly quiet! Dad's 'fellow inmates' as he calls them aren't all suffering with dementia though so some have different kinds of issues, not sure if that's easier for a PWD to cope with or not. Either way he thinks there's nothing wrong with him and that the staff don't do anything when of course they work extremely hard behind the scenes to keep the show - i.e. his life, which he's the star of - going. He has no idea what the stage hands are up to, making his life run smoothly. It's wonderful really. What's possibly more important is whether you think they are getting good care and are safe, with opportunity to do activities and so on. I keep in touch with the staff and management so they know I am keeping an eye on things and so far I think they are doing a good job, but if not I'd want to discuss it with them as well as dad. I wonder if the unhappiness is the place or if it would be repeated wherever she went - I suppose there's only one way to find that out but it could be difficult to arrange going somewhere else even for a short stay. I know that if we take dad out he gets tired and hungry fast and wants to go back quite quickly, complaints about food and other inmates aside!
 

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