Mum is not happy in her Care Home

[Margaret W]

Mum went in on Friday, seemed keen. But we visited Saturday and Sunday and she was really down. Says the other residents don't talk, they just sit round a tv screen all day - and they do, I have seen it. Not good enough for mum. Problem is, we have looked at 8 homes, and others were worse, and we are in Buxton, Derbyshire, which is noted for its choice of care homes, and we have picked the best we could. We looked closely at another, but rejected it cos the room was out of the way, and we only saw six residents out of 24. I worried where the other 18 were.

What can I do? This home we have picked is the best out of about ten. The three in her home town have no vacancies, two others in the locality had no vacancies, so do I keep looking to find somewhere better? How do I know what is better? (They all sit round t.v screens - what is it with the t.v.?)

What is better? The Home mum is in has trips out every fortnight, hairdresser every week, a part time acitvities co-ordinator starting this week, her bedroom is lovely (we saw some **** bedrooms), but she says the food isn't good, and the staff are not nice. We have spoken to most of the staff in the last week and we found them to be exceptionally nice and caring, and enthusiastic about their job. So why is mum saying they are not nice?

The hospital she was in before she moved to the care home, will keep a bed for her for a fortnight. Do I ask them to take her back? Do I start now to look at Care Homes out of the area (Buxton is ideal for us, 15 minutes drive, on my way to and from work).

Any advice gratefully received.

Magaret

 

[connie]

Margaret, I don't think I know of anyone who settled in 3 days.
You say mum was O.K. on Friday, but complaining on Saturday and Sunday.

Don't know any of your circumstances, but it does seem that you have visited, and rejected on various grounds, several homes. How many more will you visit before you decide, only to have mum maybe complain again.

I know from experience that lots of homes seem to have more going on in the week. Weekends the routine is somewhat changed (Don't know if they feel that maybe more visitorsaround makes a difference, so they can do less.)

Personally I would give it a bit longer, although you might want to continue looking around.

 

[blue sea]

Hi Margaret
First of all I would say 'don't panic'. Most people take some time to settle in a home, particularly people with dementia. I wouldn't advise letting mum go back into hospital as it doesn't resolve the longer term issue. The home seems good in many ways - no home will be perfect. Have you checked the inspection reports for the home (on the csci web site)? This might reassure you. Could you meet the activities co-ordinator and have a chat about how she/ he might interact with your mum. Could you stay during one or two meals so that you can see the food first hand?
I would suggest giving your mum a few weeks to see if she settles and in the meantime you could put her name down on the waiting list of any homes which seem good but haven't currently got vacancies. I would only suggest a move if you were very convinced that another home was significantly better as every move is difficult and you could be swapping one lot of complaints for another. I do so agree with you about the TV problem - I often think it's on more for the care assisitants than the residents.
As long as your mum is safe and comfortable there is no urgency about a move so I would be patient and see how things go. You have tried hard to find the best available accommodation for your mum.
Blue sea

 

[DeborahBlythe]

We looked closely at another, but rejected it cos the room was out of the way, and we only saw six residents out of 24. I worried where the other 18 were.

Magaret

Hello Margaret, I'm very sorry to hear about your dilemma. I'm not sure what you mean by the room being 'out of the way' in the other home you looked at. Was it hidden away from the rest of the rooms? That might be an advantage when residents get noisy, as they do in some homes sometimes. It would mean your mum had less disturbed nights but I expect you mean you would be worried about staff remembering to keep an eye on her, maybe?

Also, could the other residents have been off on an outing somewhere? I wonder what time of day you visited. Perhaps keep your mum on one or two other home's waiting lists and then when a room comes up, review your opinion about the existing home?
I'm afraid your views about homes match word for word my own thoughts. I too am not happy about my mother's home , but in her case, I think the alternatives are even more restricted than yours. So I try to visit as often as I can, I try to build a good but not too cosy relationship with the staff. I get involved with the care plan when it is reviewed, I speak to the manager when I am not happy about something .

I feel as if I have a semi-full time job just watching what happens and stepping in to prevent poor care. However, as others have said, I may be worrying more about the care than in fact my mother is. I'm not totally convinced by this line of argument. I think the quality of her waking hours is pretty low and she lacks stimulation and meaningful company or conversation except on high days and holidays and (hopefully) when I visit. It's a case of digging in and trying to make the best of a situation, in my mum's case, even though that can be quite wearing.

Are you saying that the exisitng home is very convenient for you? If so, then that is a very strong point in its favour because it means you will feel readier to visit a fair bit and it won't be so draining. I'd tend to say stick with the existing home for a little longer at least. At the same time you could try to sound out if at all possible, the relatives of people in the home that was the second choice, by revisiting at a different time of day or different part of the week. You could say you wanted to remind yourself about some aspects of the home. Or read the CSCI reports on their website.
Hope this is helpful. Deborah

 

[Canadian Joanne]

Give it a lot more time

It took my mother about 2 months to more or less settle in. For the first 2 months, she managed to find bin liners & other things to pack her clothes in. She'd wait by the front door for me & I would say "Not today" & help her unpack & take her in to dinner.

So personally I would wait much longer than 3 days. Also, dementia does skew the view of the person who has it. So maybe a grain of salt with your mother's complaints would be in order. Does the home allow family to stay during the meal? Mine does & (for a fee) we can have the same meal.

Whatever you do, don't argue. It's totally pointless & you'll only get frustrated.

 

[Taffy]

Hi Margaret,
Your post on your mum's progression seemed so positive. Margaret, your mum will need more time to settle and find her bearings, so, things may not turn out to be as bad as they seem now. Until your mum settles, she is most likely to have negative responses . When my mum went into care they lined her up with another resident and it broke the ice and she was shown the ropes. I am sure also that this paved the way for other residents to accept mum. Nothing happens at mum's home on weekends except a church service for those that choose to go. Weekends is usually family time also, I know some residents where mum is, go for home visits on weekends. I guess like little kids the TV is a babysitter. Your report on the staff is a big plus. Your mum is probably suffering a little of the blues, at times it very hard to know what to do for the best, but, it usually doesn't happpen over night. Whatever you decide I hope it works out well. Taffy.

 

[Natashalou]

I think it is very difficult for a person to settle if they are among the most alert among the residents. Although my mum has multiple problems both mental and physical , she is non the less among the most alert.
Initially she stayed in her room all the time and didnt iterract at all, having seen everyone else sitting round the tv, most asleep , she commented she didnt want to get like "those people"
Then she had a fall in her room and she was "made" to sit in the lounge all day where she could be watched as it was deemed too dangerous for her to stay in her room, mainly coz she wouldnt do as she was asked and kept trying to get to the toilet etc without help!
finally she did form a kind of friendship with another lady (who believes herself to be there on a temporary basis but she has been there over a year, probably her families coping tactic!)
She is still unhappy, says daily she wants to die, asks me why Im punishing her etc etc etc. I think some people really never do settle and maybe sometimes when they do its a kind of giving up.
If your mum is alert then maybe its worth seeing what she would actually like to do! In mums home although there is an activity co ordiantor who tries very hard, most people arent capable of even the most basic activity. ..and she would be delighted if a few people actually joined in.
Ive tried puzzles, jigsaws, knitting, french knitting, drawing painting simple embrodery, large print books, magazines, talking books...none of these have worked and ive really run out of ideas now. ...but maybe your mum might enjoy some of those.
When I ask mum what she wants to do she just says she doesnt know
I hope things improve for you soon

 

[Grannie G]

I bought a table puzzle. It is made up of 56 black hexagons, each with wavy lines of red, green, yellow and blue, very clean cut and clear.

Thee object of the game is to match the colours, at the same time, making loops of one specific colour.

We matched the colours, made the loops and Dhiren was very keen. He recognized it would be beneficial to him.

But by the time we had completed the puzzle, he was having problems focusing. So we won`t do it again.

This is the problem with activities. How to find suitable ones.

 

[mandy111]

hi margaret

hi margaret, i am sorry to hear about the problmes with your mum but i wouldnt worry. talk to the staff about things your mum likes to do ie hobbies etc maybe if your mum is able she could help around with chores wit the carers. your mam will be fine just give her time. but do speak to staff and give them as much information about your mum. its the hardest thing to do decideing to put your parents or close family into care but it is for the bext for your mum.
hope that helps

 

[Margaret W]

Mum's new home

Thanks all for your comments, really appreciated. She has been there for a fortnight now and her attitude hasn't changed. She isn't happy. She is accepting that she will be there till she dies, and hopes it comes soon. It is horrible to hear her say that, after all those lovely years of marriage with my dad, always planning something, always scheming. And suddenly nothing to look forward to.

Mum has no hobbies, never has had. She used to read a lot, I have given her some books, but she says she can't be bothered. She has a t.v. in her room, but says she can't be bothered to watch it (the t.v. was a major part of her life when she was at home). She has never done puzzles, crosswords, jigsaws or whatever. Can't even thread a needle let alone sew on a button. No interest in drawing or painting. I have arranged for her to have a daily paper cos the home doesn't seem to have any, costing £6 a week which we could do without, but if it makes a difference.....

The activities co-ordinator was due to start last week, no sign as yet. The fortnightly musician hasn't appeared. The fortnightly trip out seems to have been forgotten. The care staff don't step in and do anything, I mean, what does it take to organise a game of bingo or dominoes for half an hour? The hairdresser visits twice a week, but my mum seems to have missed out despite me specifically asking the staff to ensure that she was told of the visit - my mum likes her hair done once a fortnight, and I have made sure she has the money to pay for it.

I asked her if she had had a bath, she said no, but the staff say she had one on Wednesday. Did she? How do I prove it? They say she has settled in fine, meaning she is no trouble to them, but she just isn't happy. We are paying £460 a week for this out of her money, is it worth it?

Margaret

 

[Brucie]

Hi Margaret

The trouble is, we can't be there at the home all the time, so there always has to be an element of trust to be built. Only time and observation can do that, but of course the trouble is, our loved ones don't have infinite time, and their condition, already bound to worsen, may accelerate.

Just to pop one thing into the pot.

you said

She used to read a lot, I have given her some books, but she says she can't be bothered. She has a t.v. in her room, but says she can't be bothered to watch it (the t.v. was a major part of her life when she was at home). She has never done puzzles, crosswords, jigsaws or whatever. Can't even thread a needle let alone sew on a button. No interest in drawing or painting. I have arranged for her to have a daily paper cos the home doesn't seem to have any

Books, newspapers, TV.... this was true of Jan as well, all interest went. She also DID love crosswords, jigsaws, and was a great dressmaker, crochet - and knitting expert.

All interest in these things was lost, even though I tried constantly to ignite it again.

Jan was being cared 24/7 at home at the time, by me.

She stopped the books because she simple kept re-reading the first paragraph of a page and, by its end, had forgotten what she read. She would spend hours doing that.

Same with newpapers.

TV - she lost the ability to differentiate between reality and the TV, but also could not follow storylines. I tried desperately to find anything on TV that she could understand, but all to no avail.

It is the progression of the condition, and one of the most frustrating and horrible. We know with a child that we can teach them things and they will develop from there. People with dementia may appear child-like in their needs, and sometimes in behaviours, but that is where the similarltiy ends, in my view.

What you might try is to take some dominoes in and see if Mum shows any interest. If she does, you can point it out to the manager and suggest it as a diversion for residents generally. If she shows no interest when you try to play the game with her, then the staff at the home have no chance.

In Jan's home, most entertainments are probably of most benefit to the staff, to enliven THEIR days - they are organised around the residents, and the residents are encouraged to participate, but they are primarily spectators, sadly.

 

[Grannie G]

Dear Margaret.

I`m sorry you are still unhappy about your mother.

When a crisis happened and we took my mother to her Care Home, on the journey there she told us how grateful she was that we were helping her to feel safe. I told her I just hoped she`d be happy there and she replied,
`I don`t expect to be happy.`

I don`t think there are many people with Alzheimers who are `happy`. It`s not that type of condition.

My husband also had no hobbies. He was too busy trying to make a living all his life. He too, `can`t be bothered` whenever I suggest something new. But as I know it`s more difficult to learn new skills as you age, I understand it`s virtually impossible to learn new skills with Alzheimers, and even to hold on to the old skills.

She is accepting that she will be there till she dies,

At least she is accepting. She is probably able to be more accepting than you.

And suddenly nothing to look forward to.

With Alzheimers, who has?

We are paying £460 a week for this out of her money, is it worth it?

What is the alternative?

Dear Margaret,
Because your mother`s Alzheimers has progressed so rapidly, I feel you are finding it very hard to come to terms with it, if anyone ever does come to terms with it. The thought that your mother is unhappy is painful.

When my husband has a particularly rough day, which reduces me to tears, I`m not crying for myself, I`m crying for him, because this illness is the most painful and heartbreaking to live with.

I can see how upset you are for your mother, but unless you are sure you can make life better for her, I would leave her where the staff believe she has settled, rather than move her.

I`m so sorry you are going through this upset. I wish there was an answer.

Locve xx

 

[Margarita]

I was looking at an inspection report on a respite home mum going to , they where saying that they should be more then just part time part time activities coordinator and on the day of the inspection activities coordinator did not turn up .

I'm not saying to move your mother because at the end of the day , your mother is excepting that she going to be in care home for the rest of her life and you say

the staff are nice. We have spoken to most of the staff in the last week and we found them to be exceptionally nice and caring, and enthusiastic about their job.

really what I find is the staff that make the home , so your lucky you've found that, My mother went though a stage even when living with me , she wanted to be somewhere else then with me , took a long time to settle with me , So I think its going to take your mother a long while to settle at the home, or any home .

Seem to me that your issue is with activities coordinator , getting your mother to the hairdresser , who to say that won't happen in another home .

I found in another emergency respite care home activities coordinator, reach people with dementia was with music , they have balls lying around also when I visited in the evening they just be siting they , I use to put DVD music video on , I started throwing the ball and we would all be throwing it back at each other they came alive, smiling responding to be spoken to .

They have days that they brought in a man that would sing to then or the theater group would come on another day .

and this home was a nursing home , what they call EMI .

your mother is in residential care home , she not on her last legs yet in the stages of AZ , bed ridden , complain nicely saying you want to see time table of activities coordinator weekly plan , you choose this home because of the staff and the activities.

they may say she been ill , OK give them some le way , but if it keep happening I'll be moaning at them , till my mother get her hair every 2 weeks and
more simulation

like Deborah says

I feel as if I have a semi-full time job just watching what happens and stepping in to prevent poor care.

with you its watching what happens and stepping in to get more simulation and keeping up her dignity in getting her hair done , your not asking for that must .

Like me if I don't push for day center for simulation , my mother would just sleep her days away , OK I understand she not going to get better , but it give her something to concentrate , look forward to while she still can .

 

[Nell]

At my Mum's home the Activities Coordinators seem to do a pretty good job, but I still find Mum is "not interested" most of the time.

I think it is a function of "normal" thinking to want to be entertained / occupied. This desire or need seems to go when someone has dementia.

I find a similar thing in my students with intellectual disabilities. We are always trying to stimulate their curiosity, their desire to learn and to encourage them to seek challenges. I'm sure most of them think we are just trying to make their lives difficult!! They far prefer the status quo. They don't like things to change; they want everything to remain the same; they are not interested in learning or discovering new challenges.

As you can see, there are many similarities with dementia.

I do think it is us, the relatives and friends, who feel our loved ones must be stimulated and "do" things. Many of them have little or no interest in this.

I echo Bruce who says when activities are organised, it is often the STAFF who benefit most!!

 

[Margaret W]

My mum - thanks to all of you

Gee, it seems I just haven't learnt yet what having Alzheimers means to the sufferer. Three months ago mum (we thought! we were wrong) was living a normal life and now she is in a care home and hates it. No, that isn't right, she doesn't hate it, she is "switched off" from it. She won't be happy anywhere except in her own home and that isn't safe. On Sunday, she said she had decided to apply for a council bungalow (warden controlled). I tried to explain that she wouldn't be allowed, and she wouldn't have it. She said she could do what she wanted (and I suppose she can, unless she was sectioned), but I said they wouldn't accept her without the doctor's permission. What doctor? she asked. I said the Psychiatrist. Oh, she is not my doctor, I don't take any notice of HER. I said, mum, she is senior to your doctor, she is a consultant. I don't care what she is, she said, I don't want to be here in this home, I want to be in my own place.

But, I don't think mum is likely to do anything about it (like try to escape), she is a very compliant lady, I just hate her being so distressed. BUT (bigger, you notice!), you are all telling me the same with your own relatives, so this is obviously a common reaction.

I am in cloud cuckoo land, wouldn't it be lovely if our parent or partner could appreciate the need to be in a home, glad we had found one for them, happy to be there, settle in at once, make it their home, and all would be well. It's a bit like when I had a "difficult" constantly-crying first baby, the health visitor said to me "You're expecting to find an answer every time she cries. Well, there isn't one". Yes, it feels the same, now I recognise the feeling I had 27 years ago. There was nothing wrong with the baby, she just seemed to like making a lot of noise (you do wonder, she ended up a Bulimic in her teens, and once a Bulimic always a Bulimic, but thankfully it is now well under control - her control), but there was nowt I could have done at the time, and I think what you are all telling me is that there is nowt I can do now, except sit it out for a while and see what transpires. There are no answers. A physical disability would be so much easier (well, I'm sure there are lots of people with physically disabled loved ones who could tell me it isn't any easier), but at least you could COMMUNICATE with them.

Yeah, thanks all. I see that there is no right and wrong, it is all guesswork, as is most of life. I see that nothing is perfect. I see that I have got to stay positive and less emotional about it all (I've done more crying this last 3 months than I have done in my 55-year lifetime!). (Except perhaps when I was 13 and the boyfriend of two weeks dumped me!). Ah, it is all relative.

Oh, thanks everybody, your comments really do help.

I am making an appointment with the care manager for Friday to iron out a few bits and pieces. I am not good at being assertive, my husband says I am aggressive instead, and he is probably right, so I will do my best to be quietly assertive (new for me - Brucie knows that!). AND I AM ARRANGING FOR A PRIVATE HEARING AID TEST COS THE NHS IS USELESS. Poor mum is deaf as a post and it isn't helping. I might post a separate thread on this.

Thanks, thanks, what a great comfort you all have been.

Love to all

Margaret

 

[Margaret W]

Margaret again

I just thought on reading everyone's replies to me that we lot could put togethe a plan for the "ideal" care home - but then that is me looking for answers again!

Margaret

 

[Taffy]

Dear Margaret,
There is nothing wrong at all with looking for answers. 'IDEAL' care home now that is a lovely thought. Hope that your mum settles soon, it is a very distressing time. Best Wishes. Taffy.

 

[Nell]

wouldn't it be lovely if our parent or partner could appreciate the need to be in a home, glad we had found one for them, happy to be there, settle in at once, make it their home, and all would be well.

Dear Margaret,
It WOULD be lovely!! I felt so sad for you when I read this. I think it is like a knife in each of us when we know our loved one/s aren't happy and yet there really is NO other choice.

We so wish we could "wave a magic wand" for them. I sympathise with your distress so much!!

Please know that others share your feelings and none of us can avoid being emotional about it. We know (like you do) that we need to stay positive, etc. but it is SO hard to do!!

Just a note on the positive side!! My Mum has now been in her home for two years and is really quite settled and happy there. I asked her recently after reading some awful things on TP about NH and she was very positive and happy. Fortunately, despite her AD, she is still quite good at expressing herself - so I feel reasonably confident that she really is happy - or as happy as you can be in such a situation.

Mind you, that can all change in the blink of an eye!!

 

[strawberrywhip]

Good luck Margaret hope things improve
On the hearing test side of things ..do you think she will be able to co-operate? My MIL we thought had significant hearing impairment wouldnt wear her hearing aid ..but could hear quite a lot when she wanted to..or it was simple requests or comments...but (even before she went into residential) she would blame her hearing ..and the fact that people were`mumbling`and not talking clearly whereas we realised later she was just not able to follow the flow of a conversation ..or the TV. I thought that was quite interesting and we realised that her hearing was pretty good for an 80yr old.

 

[Taffy]

whereas we realised later she was just not able to follow the flow of a conversation ..or the TV.

My mum has had hearing aides for nearly twenty years. A few years back it seemed that her hearing had deteriorated. At a hearing assessment they came to the conclusion that it was actually the dementia that was affecting her ability to process what she heard .Taffy.