Should we move mum to a different home?

[Dina]

hi everyone

my mum has been in a care home for 5 weeks now. she remains unsettled and unhappy. says she wants to leave, hates it, wants to die, wants to know what she has done to deserve this....

we have had conflicting advice regarding visiting, and have visited alot and even taken her out a few times. she was seen the week before christmas by a psycho-geri doctor who suggested we do not take her out at all and visit much less, to enable her to settle. we are happy to do this if it will work.

only problem is, with every encounter i have with the home, i am losing all confidence in their ability to look after my mum. i know they will never be able to give her the attention she got from her family, but they seem unable to take into account her AD.

it is apparantly a good home, had been recommended by two people we know and is certainly not cheap - £750 pw. however, we have become aware that mum has spent the whole day without her glasses on - on at least 3 occaisions - and then they phone us because she is getting aggressive and uncooperative! i visited yesterday and she had no glasses on (at 2pm), i spoke to the manager last week about it, a senior carer yesterday and phoned this morning at 9.30am to check if she had them on and....yes you guessed, she didn't!!

how can they expect anyone to settle when they can't see anything, let alone someone with AD?

not only the glasses issue, but also, the staff do not seem to 'engage' with the residents. it is a fairly large home, 55 beds, and a fair number of staff, but when the carers are in the lounge they seem to sit around chatting to themselves and make no effort to chat to the residents. there is plently of entertainment, something usually every afternoon plus they usually have cards or games for an hour a day after lunch. but other than this there seems to be no involvement between the staff and residents unless there is an obvious care need.

i have rambled on and probably not made my point even, but what i'm wondering is would it be the worst thing possible to move my mum if we thought we had found a better home, one more geared up to caring for sufferers of AD?

and any tips on how to find such a place? i'm thinking smaller (5 -15 beds) and more home like? any advice gratefully received!

 

[Áine]

hi Dina

Social services should have a list of care homes in your area. Or you could search the web. Discussing your dilemma with any new home might give you a good sense of how tuned in they are to people's needs.

My dad had (or at least was supposed to have) glasses, two hearing aids, false teeth and a walking stick when he was in nh. I'm not sure I ever found him complete with all of these! One of the problems was that when he was new there, not everyone was used to what he needed (OK, it would be in his notes ..... but you know how it is); then it was a problem because they'd have bank staff in who didn't know (and some of them probably didn't particularly care either). One of the biggest problems though was that dad would just wander around taking glasses off, hearing aids out etc and leaving them scattered around the nh. It was full time job just keeping up with him.

What did the manager say about it when you phoned? I'd suggest (unless it's clear that mum is being mistreated) you hang on and exhaust all possibilities for resolving the difficulties where mum is before you move her.

 

[noelphobic]

and any tips on how to find such a place? i'm thinking smaller (5 -15 beds) and more home like? any advice gratefully received!

I don't know if you will be able to find any home with as few beds as that, although some in this area are only about 20 bedded. Is the present home an EMI home or just a general care or nursing home?

The following link should take you to the CSCI reports where you can look for all homes within a given area

http://www.csci.org.uk/registeredservicesdirectory/rsquicksearch.asp

There is nothing to stop you having a look around to see what else is available, while still trying to resolve the issues with the present home. If the issue was just that she is unsettled I would say it is early days yet. Also, sadly, the nature of dementia can mean that she will never settle. There is one lady in my mum's present nursing home who has been there for several years but still doesn't seem to believe that she lives there! If you also have issues, as you seem to, with the level of care offered then it would be a good idea to see what else is available.

Hope this is of some help.

 

[Dina]

thanks Áine and noelphobic,

i know it is still early days, and worry that i'm over reacting because mum is still not settled, so maybe i'm looking for reasons. she was never happy wherever she was, even living for a year with my brother and his wife (who took carer's leave from work to look after her and my mum now treats as public enemy no. 1!!!)

the manager said he would look into it and ensure the staff were aware.

the social services seem to have washed their hands of her now that they have established she is self funding! they were never very helpful, allocated a community support worker instead of a social worker (but didn't inform us) and only came up with one alternative home with a vacancy which wasn't suitable anyway - we found this one

this one is a care home with 17 beds on the 2nd floor especially for residents with AD, with staff 'trained to a higher level' yeah right

i spent 4 hours this morning searching for homes in my area and checking out their csci reports. there are some with as few as 8 residents. i will spend some time this week visiting to get an idea of alternatives and as you say, their reaction to current situation may be good indicator.

thanks again for advice, maybe need to hang on in their, but won't hurt to look at alternatives - might discover this isn't so bad!!

 

[Grannie G]

Hi Dina, Yet another horror story about care homes, but somehow impossible to resolve.
When my mother was settling in her home, I spent two full days being `a fly on the wall`, because she kept running away and the staff couldn`t accept responsibility for her until they had a secure place on the EMI unit.
I don`t want to upset you, but it was impossible to keep a check on teeth and glasses, because so many residents continually played with them, or took them off/out and left them on tables etc. Glasses cases with names in were useless,as any case was picked up or put down.
Some residents were like squirrels, going round `collecting` anything they fancied.
I`m forever helping my husband find things he`s `lost` in our own home. He often picks up my glasses, then, when he can`t see with them, asks me to take him for an eye test. I`m afraid it seems to be part and parcel of the condition. Imagine 20+ residents in a unit, all losing or mislaying. How can it be monitored.
It`s so upsetting for families

 

[jenniferpa]

I have to say, I agree with Sylvia. Losing teeth and glasses seems to be par for the course. Either they put them down and someone else picks them up, or (and I think this is particularly common with teeth) they wrap them up in tissues and then they get thrown away. If there are other issues, fair enough, but glasses? It wouldn't be at the top of my "problem" list.

Jennifer

 

[Cate]

Hi Dina

I think in your shoes I would go with my gut instinct on this one. If you feel that the general culture within the home is not geared toward people with AD, then I doubt you will be able to change that.

It’s a tough one, do you hang on in there and hope things change, or do you take matters into your own hands and move mum now before she gets too settled, only you can decide that.

The level of care that my mum receives is first class. However, the home does have a separate EMI Unit, which is separate to where mum is now, which is residential for the time being at least. We chose it specifically because of the EMI Unit, in the knowledge that if and when mum would require EMI care, then it would not be a huge upheaval for her, simply a move to another part of the building.

From a staff point of view, all the staff, at some time, rotate between both the residential and EMI unit. This means that all the residents get to know all the staff and vice versa, and more importantly all the staff are very used to looking after EMI residents. Another couple points which swayed our decision to this particular home was, on each floor (1 residential, and 2 EMI) that on each floor there are only 18 residents. Another point, all the staff had worked there for a number of years, which we felt demonstrated that it was a happy place to work, therefore should be a happy place to live.

Very quickly the staff engaged well with mum, they seemed to suss out her personality, and her sometimes very difficult behaviour, and they at all times have shown her nothing but respect and patience, and trust me, she can be very, very difficult, sometimes even aggressive.

She is forever losing her glasses, dentures, all sorts, as she did when she was still in her own home, saying that what ever it was she had forgotton where she put it, had been stolen, she has accused the staff of stealing from her. They quietly locate the missing item, and put it where she can see it, no big deal is made of it, nobody makes her feel foolish.

In the lounge they have a notice board, on which they put up 'todays weather' and 'todays day and date'. Its small little things like that which help. They work very hard to ensure that all their residents feel at home. Mum gets a hug goodmorning and goodnight from her 'personal allocated carer', nothing is too much trouble.

I hope this has given you an idea of what is available out there, but I admit it wasn't easy finding it, and boy did we have a battle with Social Services to move fast enough to get the place, especially as mum moved out of her Social Services area into mine, but anything is possible.

I don’t envy you your decision, especially when you thought everything was settled, hopefully this is just a blip, and all with come together. Good luck with what ever you decide.
Love
Cate

 

[Dina]

the glasses issue is that, without them, she is surely even more disorientated and they have not been lost, mislaid or moved by another resident - they are on her bedside table where she left them when she went to bed, but having AD she doesn't remember to put them on in the morning.

my worry is that if they can't even put a pair of glasses on her, are they able to deal with her more complex and more important needs??

 

[Amy]

Hiya Dina,
I think I would be tempted to say, give it a little longer. As you say, mum is never happy, so why should this be any different?
I know at mum's NH there are times of day when staff seem to interact more with clients - in an afternoon they are more chatty than at mealtimes.
Even mum's glasses have been a problem - she cannot remove them herself, but still they have been lost, and broken.
I think that it is important for you to try and form positive relationships with the staff - so that you can talk to them about your concerns without them feeling criticised. We all react differently to different people, so try and identify those staff that have a natural affinity with your mum, and cultivate the relationship.
Let us know how things go.
Love Helen

 

[jenniferpa]

Ah I see where you're coming from, then. On the other hand, since such things are so problematic in a nursing/residential home setting, it may be that this issue is not high on their radar, while other things may be. I would do what you're doing, on that basis: look around and see what's available, while continuing to try and educate them about the importance of this issue to your mother's well-being.

Jennifer

 

[daughter]

Hi Dina,

look around and see what's available, while continuing to try and educate them about the importance of this issue to your mother's well-being

Doing both seems the sensible option. I also agree with Helen that it might be best to give it a little longer. Perhaps it may help get a wider picture by chatting with other resident's relatives too.
Best wishes,

 

[rummy]

I am somewhat alarmed that this home advises you not to visit. I pop in to see my Mom at odd hours and different days to make sure she is being taken care of. They shouldn't ever assume you won't come. In fact, there are 9 women in my Mom's unit ( a locked AD unit) and she is the only one that gets daily visitors. They have all become special to me and if I see anything amiss with any of them I go to the head nurse and complain. Their reputation is very important to them and I have never not been taken seriously.
If they say don't come, go more often even if it is to just observe from a distance. If they know you'll pop in to check on her at any time, they will be more apt to have her in order all of the time. Learn the nurses and the aids names and make sure when your there that you walk the halls and that they all get to know who you are. Remember them at holidays, take them goodies and constantly tell them you appreciate what a hard job they have and that you are grateful to have them taking care of your mother.
After doing these things, they all respond to us positively and go out of their way to see after Mom. Perhaps this will help you as well.
Good luck and know that it gets better with time but indeed, there may be a better home out there !
Debbie

 

[Cate]

Hi Debbie

Really sound advice on all counts.

Cate

 

[Momx4]

Hi Dina

Lots of good advice, which I can't add to other than to say that we spent the first 2-3 months with some of the same concerns, when Mum was admitted to an EMI unit in July. I would say that, for the first 3 months in care, she continued with many of the same difficulties that had occurred when she lived supported @ home and then lived with us.

However Mum stabilised - medically and mentally - as a result of good trained observation, a routine, regular responsive medication and regular meals (The last two had been particularly problematic as Mum would refuse food, or to swallow meds for us or her home carers). Now, various medical concerns such as her diabetes and leg ulcers, her persistent UTIs, her weight loss and dehydration are under control, so although frail, she looks relatively spritely. To some extent her paranoias have lessened, although Mum is still very much in her own 'world' and can be very difficult to manage at times.

We too were advised not to visit for the first few weeks, though I had open and daily telephone contact. Since then we have been encouraged to visit whenever we like and for the last two months, if she is having a 'good' day, we have been able to take Mum out of the Unit, starting with short walks around the grounds, then to a small local shop and now we are up to a rather muddly but enjoyable meal out.

Dina, for the first few months, I never thought we would get this far and I had endless discussions with my husband and children as to whether we should move Mum, where to etc. Everyone has different experiences. Perhaps watch what happens carefully, have a plan B on hold but as long as your Mum is safe, cared for and not obviously deteriorating beyond expected, give the staff a chance to help her become stable and for her to form relationships. For my mum, it took a good 3 months.

PS Mum has her glasses on a cord round her neck. Upside - she always has them. Downside - she often has them round her neck and is spotted wearing someone else's!

 

[Kayla]

Treats for the staff

Rummy suggested taking in goodies and treats for the staff, but before doing this, do check with the Home's policy about accepting gifts. We were firmly told that the staff are not allowed to accept gifts from residents or their relatives. I think it is to make sure that there are no misunderstandings. A friendly approach to people working in the Home is still very good advice and if a complaint has to be made, it could be done in a non-confrontational way. I've always found carers and nurses are usually kind and helpful.
Kayla

 

[Dina]

Thanks!

Thanks to all for your good advice and kind thoughts.

We are going to hang on in there with this home, it seems to be early days still and more time is needed to see whether mum settles and becomes more contented or not.

It could be she will never be happy wherever she is, but on the other hand, the present situation cannot continue if she thngs do not improve at all. If after 2 -3 months, we see no improvement, we will have to try somewhere else on the basis that it can't be any worse.

I still have some serious reservations about the homes ability to care for people with AD, with a shortage of one to one attention. It seems more like a hotel, good food, nice surroundings, very clean, but very little contact between staff and guests unless necessary - I could be being very unfair, I know, but it is impossible to know what goes on when your not there!!

I shall continue with 'plan B' and see if I can find somewhere as a back up if things don't get better.

Can anyone pls tell me this...are all nursing homes which take people with AD, homes with EMI units, or can they just be simple nursing homes with no secure unit as such?

Thanks again for all your kindness.

 

[Amy]

Hiya Dina,
Mum is in an ordinary NH, but they are very selective - if mum had not stopped continual walking she would not have been able to go there.
Love Helen

 

[noelphobic]

I still have some serious reservations about the homes ability to care for people with AD, with a shortage of one to one attention. It seems more like a hotel, good food, nice surroundings, very clean, but very little contact between staff and guests unless necessary - I could be being very unfair, I know, but it is impossible to know what goes on when your not there!!

Can anyone pls tell me this...are all nursing homes which take people with AD, homes with EMI units, or can they just be simple nursing homes with no secure unit as such?

Thanks again for all your kindness.

That sounds very much like my mum's nursing home!

My mum was originally in an EMI care home but since she lost her mobility she has been in a nursing home. This is not an EMI home although there is a sister home on the same site that is. So, not all people with dementia in care live in EMI homes.

 

[Dina]

Care Home v. Nursing Home

Thanks All,

I hadn't realised that nursing homes (for those with AD) can be 'not EMI'. Maybe this might be something to look at for my mum - somewhere where there are trained staff, but not so extreme as an EMI unit. I say extreme, because I have been told that EMI Units are places to be avoided if at all possible. I don't know how accurate that is.

Any view on benefits of Care Home v. Nursing Home? My mum is physically fit, 77 yrs old, fully mobile, not particularly frail. If you encountered her socially, you would think she was fine...for about 1 minute...before realising what she was saying did not quite add up!

Any thoughts, as always welcomed. Should this be a new post?

 

[noelphobic]

Thanks All,

I hadn't realised that nursing homes (for those with AD) can be 'not EMI'. Maybe this might be something to look at for my mum - somewhere where there are trained staff, but not so extreme as an EMI unit. I say extreme, because I have been told that EMI Units are places to be avoided if at all possible. I don't know how accurate that is.

Any view on benefits of Care Home v. Nursing Home? My mum is physically fit, 77 yrs old, fully mobile, not particularly frail. If you encountered her socially, you would think she was fine...for about 1 minute...before realising what she was saying did not quite add up!

Any thoughts, as always welcomed. Should this be a new post?

Nursing homes tend to be more expensive than care homes so this could be an issue. If your mum is funded by Social Services then they would have to assess her as needing to be in a nursing home and therefore they would be willing to pick up the extra costs. Also, if is deemed that someone needs to be in a nursing home then an assessment needs to be done to see if there will be a nursing care contribution paid. This comes from the NHS and would be paid whether the resident is self funded or not, but would only really be relevant to the resident and their family in the case of self funding ie if the resident is paid for then it doesn't really make a difference where the funding is coming from, if the resident is self funding then the nursing contribution would reduce the amount they had to pay.

I don't think I would necessarily say that EMI units should be avoided if at all possible. I think it depends very much on the home concerned. I do sometimes think that it is not good for people with dementia to live JUST with other people with dementia, but that would be my main reservation. My mum has been in an EMI care home and in a 'ordinary' nursing home. I would say that the main difference I have found is that the residents in the EMI home did not generally stay in their rooms during the day, while a lot of the residents in the nursing home do.