Who is telling the truth about the Nursing Home

[KlaraNiece]

Hello, I am a new member. I am the LPA of my auntie who is 98 and has dementia. Sometimes she is with it and sometimes she is away in the past and doesn't recognise people. As I live an eight hour drive away from her Nursing Home I have organised a local friend of my auntie's to visit very regularly and keep me informed. My auntie has a Care Plan and everything there seems in order and the management approachable and the staff seem kind. The friend says my auntie is neglected, that the Care Plan for her routines is not kept to, that auntie is left on her own for hours and is sometimes not woken up for breakfast. She thinks she is not checked enough during the day and not made to drink enough. I visit once a month. Auntie is sometimes out of it and sometimes responsive when she might chat happily for a bit or might cry. She looks cosy when in her bed and upset when out of it in the communal area which she finds noisy. The staff seem lovely - they always seem kind to her but they are very busy, always popping here and there. I have dropped in unexpectedly and things are not so tidy but it is very difficult to say if things are not okay as I am very inexperienced here. My cousins live abroad and don't take too much of an interest which is why everyone organised for me to have LPA. I wonder if the friend may be expecting too much? Staff say auntie is usually got up for breakfast and sleeps in the afternoon. I do get the feeling that she does spend a lot of time alone. The friend is getting cross that I haven't taken things she has told me up with the management/lead nurse and says she is not prepared to take on responsibility but feels upset when visiting that auntie still in bed, or says things like "nobody comes for me". I feel in a bit of a bind. What things would reassure me that the Nursing Home is not lying to me? Cameras aren't allowed and I wouldn't want to film my auntie anyway - and I don't want the home to think I don't trust them if in fact her friend is exaggerating everything. This message will obviously show I am a newbie to Nursing Home care as well as dementia! I look forward to all your experience to help me.

 

[Sarasa]

Welcome to Dementia Support Forum @KlaraNiece.
Have you managed to meet up with your aunt's friend and go and see her together? My mother had a few friends and relations in care homes and she was very critical of them all. I don't think that was necessarily anything to do with the homes, just my mum not liking the idea that as you age you might need to be in care. I guess your aunt's friend is the same age as her and that might colour her view.
What would the friend say if you suggested that you move your aunt closer to you so that you can visit more regularly? Is there any reason she needs to stay in the area where she is? If you could pop in a couple of times a week that might set your mind at rest.
The other thing you could do is arrange to meet with the manager to discuss your aunts care and maybe mention the friends concerns. Managers are usually very happy to address the concerns of relatives and should give explanations to things such as your aunt staying in her room. Certainly there was a time when my mother's home kept her in her room. Partly as the were worried she might fall, but also because she didn't seem to like being in social areas. When I raised this with the manager they worked on getting her out and into the lounge more often and gradually she seemed to settle and to enjoy it, though there were days when she preferred to be in her room.
This is very friendly and supportive place and I'm sure others will be along shortly with their ideas and suggestions.

 

[Jale]

Hi @KlaraNiece, the joys of dealing with nursing homes/well meaning friends. From what you have said I would take what your Auntie's friend has said with a tiny pinch of salt.

Many people have distorted views of homes, some think that the carers are able to stay with residents all day, otherwise people are being neglected, and unless someone has 1 - 1 care that is not going to happen. Obviously a home will never care for a person the same way that family members do - their routines are different and may sometimes seem a bit odd to us visitors, carers do things differently with mum than I would but then they have other residents to care for, I just had Mum.

It may be likely that your Auntie doesn't like being woken up - my Mum certainly doesn't and if carers were to wake her for breakfast she would be very aggressive towards staff. Instead they let her wake up on her own and then give her breakfast. Mum is now bedbound, initially she seemed to enjoy going to the lounge and joining in with some activities, but then she found it too much to deal with so she stays in her room and she does seem much happier in her own little world. She does have the activities ladies go in to her room, sometimes mum will respond to them, other times not. Carers always look in Mum's room as they pass and will always call to her or wave and Mum sometimes seems happy with that.

When you next visit you could ask to see the care plan and ask questions - how often is your Auntie checked, you say that things are not always tidy, I could probably say the same in Mum's home but in the bigger scheme of things it doesn't really matter to me.

I think sometimes we look at our relatives care from our point of view whereas we should try and view it from theirs. Does your Auntie like the carers - I can see the carers that Mum likes and those she doesn't, and they haven't done anything wrong, Mum just doesn't like them, how do they respond to your Auntie, is
she eating and drinking well.
When mum first went into the home she told us she didn't like the food or drink, nobody spoke to her and nobody ever spoke to her. The actual truth was the complete opposite - we hid round the corner and watch her eating, drinking and joining in with the talking - so don't always believe what your Auntie says is the full truth.
I appreciate that your Auntie's friend is trying to be helpful especially as you are so far away, but I would tell her that you are looking into things and leave it at that.
Good luck

 

[Kevinl]

Welcome, try a visit to the Care Quality Commission's website, you can get a rating for the home or express your concerns to them. Might trigger an unannounced inspection from what you've said. K

 

[Jessbow]

I dont think they are lying.
What does 'Nobody comes for me'' actually mean? pretty much anything!

Nobody comes.......to take me for meals?
Nobody comes........to visit me? ( maybe other have daily visitors)
Nobody comes ..... To take me home?

it could mean all sort!
Is it a old friend of Aunties? She may well be tussling inside with what auntie WAS to what she is now. If she visits after lunch, probably a fair few having a siesta

How many 98 year olds have daily routines.

If she's happy ,looks clean & nourished I'd not worry too much

 

[northumbrian_k]

Hi @KlaraNiece and welcome to Dementia Support Forum. You will find this to be a helpful and friendly community of people who have experience of many aspects of dementia. You can ask questions, join in with conversations, share with people who truly understand and let off steam when you need to.

You have received some good advice already. I would just add that, from my experience, care and nursing homes try to maintain choice and independence as a way of providing personalised care. This can apply to a person's habits, dress code or a host of different things. When my wife wishes to sleep in the staff at her home let her do so, rathe than wake her just because it is breakfast time. If she misses breakfast other food will be provided when she does wake up. There are a lot of adjustments to be made, not least by people who visit the person in care.

I wouldn't rely on what your auntie's friend is saying as they might not appreciate what living in a nursing home entails. The person has changed and so will many of their habits and lifestyle choices. I don't see anything wrong in sleeping in the afternoon and maybe at age 98 that is what your auntie needs most. Having said that, if you do have genuine concerns about her care or welfare, I would raise them with the home manager in the first place.

 

[KlaraNiece]

Welcome to Dementia Support Forum @KlaraNiece.
Have you managed to meet up with your aunt's friend and go and see her together? My mother had a few friends and relations in care homes and she was very critical of them all. I don't think that was necessarily anything to do with the homes, just my mum not liking the idea that as you age you might need to be in care. I guess your aunt's friend is the same age as her and that might colour her view.
What would the friend say if you suggested that you move your aunt closer to you so that you can visit more regularly? Is there any reason she needs to stay in the area where she is? If you could pop in a couple of times a week that might set your mind at rest.
The other thing you could do is arrange to meet with the manager to discuss your aunts care and maybe mention the friends concerns. Managers are usually very happy to address the concerns of relatives and should give explanations to things such as your aunt staying in her room. Certainly there was a time when my mother's home kept her in her room. Partly as the were worried she might fall, but also because she didn't seem to like being in social areas. When I raised this with the manager they worked on getting her out and into the lounge more often and gradually she seemed to settle and to enjoy it, though there were days when she preferred to be in her room.
This is very friendly and supportive place and I'm sure others will be along shortly with their ideas and suggestions.

Thank you so much Sarasa. Yes, this certainly is a friendly and helpful place. I am so pleased and relieved to have so many good people reply to me with such kindness and common sense. I have though about your idea of moving auntie nearer to me but I would then be depriving an old, elderly friend as she would not be able to travel all the distance here without great hardship. I will, however, "suggest" this to her as an idea and she might find the present state of affairs not so bad after all! That's a bit mean I know as she might worry I'd do this - but I can reassure her later that we both agree things are actually okay as they are. I'll reassure her I look into things but she is (being kind) just expecting a bit too much. I'll remind her too that auntie Joan is not now the person she was and very sadly we must accept that.

 

[KlaraNiece]

Hi @KlaraNiece and welcome to Dementia Support Forum. You will find this to be a helpful and friendly community of people who have experience of many aspects of dementia. You can ask questions, join in with conversations, share with people who truly understand and let off steam when you need to.

You have received some good advice already. I would just add that, from my experience, care and nursing homes try to maintain choice and independence as a way of providing personalised care. This can apply to a person's habits, dress code or a host of different things. When my wife wishes to sleep in the staff at her home let her do so, rathe than wake her just because it is breakfast time. If she misses breakfast other food will be provided when she does wake up. There are a lot of adjustments to be made, not least by people who visit the person in care.

I wouldn't rely on what your auntie's friend is saying as they might not appreciate what living in a nursing home entails. The person has changed and so will many of their habits and lifestyle choices. I don't see anything wrong in sleeping in the afternoon and maybe at age 98 that is what your auntie needs most. Having said that, if you do have genuine concerns about her care or welfare, I would raise them with the home manager in the first place.

Thank you northumbrian - this is very helpful. And I'll mention to the manager that auntie Joan's friend has been a bit worried and just start a conversation here. I can say she's always been looking out for auntie Joan in their community so it is probably difficult for her to adapt to her being in a home. Something like that. I feel confident now to do this having read the replies here.

 

[KlaraNiece]

I dont think they are lying.
What does 'Nobody comes for me'' actually mean? pretty much anything!

Nobody comes.......to take me for meals?
Nobody comes........to visit me? ( maybe other have daily visitors)
Nobody comes ..... To take me home?

it could mean all sort!
Is it a old friend of Aunties? She may well be tussling inside with what auntie WAS to what she is now. If she visits after lunch, probably a fair few having a siesta

How many 98 year olds have daily routines.

If she's happy ,looks clean & nourished I'd not worry too much

Yes Jessbow, I think that maybe she is tussling as she has always looked out for auntie Joan in their community. Thank you.

 

[KlaraNiece]

Welcome, try a visit to the Care Quality Commission's website, you can get a rating for the home or express your concerns to them. Might trigger an unannounced inspection from what you've said. K

Thank you Kevini. I have now done this and all the areas say Good.

 

[KlaraNiece]

Hi @KlaraNiece, the joys of dealing with nursing homes/well meaning friends. From what you have said I would take what your Auntie's friend has said with a tiny pinch of salt.

Many people have distorted views of homes, some think that the carers are able to stay with residents all day, otherwise people are being neglected, and unless someone has 1 - 1 care that is not going to happen. Obviously a home will never care for a person the same way that family members do - their routines are different and may sometimes seem a bit odd to us visitors, carers do things differently with mum than I would but then they have other residents to care for, I just had Mum.

It may be likely that your Auntie doesn't like being woken up - my Mum certainly doesn't and if carers were to wake her for breakfast she would be very aggressive towards staff. Instead they let her wake up on her own and then give her breakfast. Mum is now bedbound, initially she seemed to enjoy going to the lounge and joining in with some activities, but then she found it too much to deal with so she stays in her room and she does seem much happier in her own little world. She does have the activities ladies go in to her room, sometimes mum will respond to them, other times not. Carers always look in Mum's room as they pass and will always call to her or wave and Mum sometimes seems happy with that.

When you next visit you could ask to see the care plan and ask questions - how often is your Auntie checked, you say that things are not always tidy, I could probably say the same in Mum's home but in the bigger scheme of things it doesn't really matter to me.

I think sometimes we look at our relatives care from our point of view whereas we should try and view it from theirs. Does your Auntie like the carers - I can see the carers that Mum likes and those she doesn't, and they haven't done anything wrong, Mum just doesn't like them, how do they respond to your Auntie, is
she eating and drinking well.
When mum first went into the home she told us she didn't like the food or drink, nobody spoke to her and nobody ever spoke to her. The actual truth was the complete opposite - we hid round the corner and watch her eating, drinking and joining in with the talking - so don't always believe what your Auntie says is the full truth.
I appreciate that your Auntie's friend is trying to be helpful especially as you are so far away, but I would tell her that you are looking into things and leave it at that.
Good luck

Thank you Jale. It is very reassuring to hear of other people's experience. And I have seen that auntie Joan is in fact quite fond of some of the carers and grabs their hands and smiles. I am going to tell her I am looking into things so not to worry so much.

 

[Bettusboo]

I would check on whether she is drinking enough and how do they know. My mum did not drink enough. I know that because she got a lot of UTIs and also when I visited she would be out of it until I had got her to drink a full cup of water. She would then revive dramatically. They may give her drinks but do they check that she has drunk them. I would also say, don’t rely too much on CQC reports. Care homes put on their best show for care home inspections and a lot can get missed. I feel I have had to be on top of the care homes where my parents have stayed to ensure their basic care needs are met. And they have been rated good or outstanding. It’s hard if you are not close by and I moved my dad to be near to me for that very reason.

 

[canary]

I think its really hard to get people with dementia to drink. You can provide drinks, remind them that they are there and encourage them to drink, but you cannot "make" them drink. Mum used to take a couple of sips and then didnt drink the rest. If I tried to get her to drink it all she would put on her stubborn mule face and flatly refuse.

 

[Bettusboo]

I think its really hard to get people with dementia to drink. You can provide drinks, remind them that they are there and encourage them to drink, but you cannot "make" them drink. Mum used to take a couple of sips and then didnt drink the rest. If I tried to get her to drink it all she would put on her stubborn mule face and flatly refuse.

It is hard but the consequences of not doing it are even harder if they end up getting a UTI. In my experience this can be an area of neglect in care homes, and may be difficult but it doesn’t mean they shouldn’t try. I didn’t think they tried anywhere near enough. If course when you reach a point of people refusing to drink then that’s another story. But for people like my mum who would forget, even if she had a drink in front of her, there needs to be ongoing encouragement and monitoring. And if people are refusing to drink or there is a problem with it, care homes should be letting relatives know.

 

[Rayreadynow]

When I visited, my PWD drank as if she had never had a drink, downing it in one like I had never seen her drink that way before, then I was thinking is that a sign of dehydration? And I never saw her once ask for a drink and couldn't see how she could. It seemed like they would just have food rounds every 4 hours with drinks i.e. breakfast, 4 hrs later lunch, 4hrs later afternooon tea, 4 hours later supper.. then bed. In between most people were taken back to the lounge area. I have found out there is a difference between 24hr care and 1:1 care.