Care and Nursing Homes - what is realistic?

[Xeenies]

My mum and I are now going through the heart breaking realisation that dad can’t come home from hospital. As part of this process we are now looking for a nursing / care home which can cater for early onset dementia and has modern approaches, prioritising personalised levels of interaction and high levels of intervention. My dad is in the advanced stages and is only 72. Our worst nightmare would be if Dad went to a home with high backs chairs whereby everyone sits around in a circle watching TV all day.

Dad is currently in hospital. They’re the best we could hope for but we are really worried about the impact being in that environment will have on him, whereby he is not taken outside and whereby stimulation is provided for only 1-2 hours a day with all the rest of the time the men just sitting watching TV.

The psychiatrist told us care homes would not provide a higher level of interaction. We have been to the most expensive care homes and they all promise personalised approaches with extensive OT / social interaction plans.

Do you think that’s a lie? Are we really expecting too much, are they just telling us what we want to hear?

Our heart breaks with the thought Dads life now is just a care home with no access to the real world

Any thoughts gratefully received.

 

[canary]

What you have to remember is that people with advanced dementia have very different needs from you and I. Their world is not our world and their reality is frequently different from the actual one. What we would find intolerable boredom and groundhogday-like routine is to them safe and comforting. There is also a danger of overstimulation which can lead to them being exhausted and confused - resulting in aggression. Its a fine balance. In mums care home there were activities in the mornings and most of them were so tired after this that they slept most of the afternoon. Once mum got to the later stages of dementia even the activities were too much for her and simply watching the world go by was stimulation enough.

I have a feeling that the expensive care homes are telling you what you want to hear and the reality will become that he can only cope with a couple of hours activity. Try and look past the decor and high-backed chairs (chosen because they are easier to sit in/get up out of when your mobility is declining) and look at the actual care that is taking place. Are residents ever left on their own? How do the staff interact with the residents? Is there a high turnover of staff and/or does the home rely on temporary staff? Are there residents at all stages of the disease? If they all seem at about his level this probably means that once his dementia advances they wont be able to cope and will ask you to find somewhere else.

Its a difficult time, but wherever you choose, ditch the guilt.

 

[Xeenies]

What you have to remember is that people with advanced dementia have very different needs from you and I. Their world is not our world and their reality is frequently different from the actual one. What we would find intolerable boredom and groundhogday-like routine is to them safe and comforting. There is also a danger of overstimulation which can lead to them being exhausted and confused - resulting in aggression. Its a fine balance. In mums care home there were activities in the mornings and most of them were so tired after this that they slept most of the afternoon. Once mum got to the later stages of dementia even the activities were too much for her and simply watching the world go by was stimulation enough.

I have a feeling that the expensive care homes are telling you what you want to hear and the reality will become that he can only cope with a couple of hours activity. Try and look past the decor and high-backed chairs (chosen because they are easier to sit in/get up out of when your mobility is declining) and look at the actual care that is taking place. Are residents ever left on their own? How do the staff interact with the residents? Is there a high turnover of staff and/or does the home rely on temporary staff? Are there residents at all stages of the disease? If they all seem at about his level this probably means that once his dementia advances they wont be able to cope and will ask you to find somewhere else.

Its a difficult time, but wherever you choose, ditch the guilt.

Thank you for your very honest response x

 

[Jaded'n'faded]

I'd agree with your psychiatrist that you won't get the sort of one-to-one attention you'd like for your dad in most homes. As canary says, most residents aren't generally able to do all that much by the time they need a care home and too much can be frightening or exhausting.

Some of the very expensive homes do offer more in the way of entertainment/activities, but could they cope with your dad? Many just want to take 'easy' residents who can still take care of themselves to an extent.

Also, you might want to consider your father's health and stage of dementia. Put bluntly, today is the best he's ever going to be, so if you put him in a home with bells and whistles and he deteriorated further, he probably would not want/need the same stimulation. So you'd risk paying for facilities he doesn't use or be faced with moving him to somewhere more suitable.

Of course, you and your mum can go in and entertain him, or take him out if he is able...

 

[Xeenies]

I'd agree with your psychiatrist that you won't get the sort of one-to-one attention you'd like for your dad in most homes. As canary says, most residents aren't generally able to do all that much by the time they need a care home and too much can be frightening or exhausting.

Some of the very expensive homes do offer more in the way of entertainment/activities, but could they cope with your dad? Many just want to take 'easy' residents who can still take care of themselves to an extent.

Also, you might want to consider your father's health and stage of dementia. Put bluntly, today is the best he's ever going to be, so if you put him in a home with bells and whistles and he deteriorated further, he probably would not want/need the same stimulation. So you'd risk paying for facilities he doesn't use or be faced with moving him to somewhere more suitable.

Of course, you and your mum can go in and entertain him, or take him out if he is able...

Thank you for this. It all makes sense.

May I ask why you wonder if the expensive homes would take my dad?

The more expensive homes seem to be more in line with the type of environment my dad would like and are also usually more modern with quality visitor areas making it nicer for visitors to come regularly. I get it, what difference would that make to dad? But how far do we consider what dad would have liked? Do we just place him anywhere, just because he’d know no difference?

It’s so hard

 

[Xeenies]

Thank you for this. It all makes sense.

May I ask why you wonder if the expensive homes would take my dad?

The more expensive homes seem to be more in line with the type of environment my dad would like and are also usually more modern with quality visitor areas making it nicer for visitors to come regularly. I get it, what difference would that make to dad? But how far do we consider what dad would have liked? Do we just place him anywhere, just because he’d know no difference?

It’s so hard

I meant to say also, yes I have said to mom we may need to consider somewhere more basic and take him out ourselves or pay for people to go in.. as you say the care is the most important element.

 

[canary]

May I ask why you wonder if the expensive homes would take my dad?

All care homes will assess the person with dementia to see if they can meet their needs. Not all care homes will accept the same behaviours. The expensive homes are often very picky and only want the early, easy stages of dementia and will not accept things like wandering at night, going into other people rooms, incontinence or aggression - all of which are normal stages of progression.

 

[Sirena]

My mother has been in a care home for 18 months and I agree with all @canary has said. There are care homes which charge a fortune for providing stuff that the visitors like - a cinema, a posh restaurant, beauty therapy room, beautiful gardens. The residents have very little interest in any of that. My mother wants comfort, reassurance and good personal care, and that is what she gets from her not-at-all-expensive care home. They have occasional outings, there are craft activities in the morning, and other activities like music and singing sessions, and my mother's favourite - a visit from a petting zoo.

When you visit you can of course provide your dad with additional interaction, but you may also find he tires quickly. During my visit to the care home last week another visitor was with her mother and chatting away, and within 20 minutes her mother had dozed off. It isn't because they are bored and there is nothing to do, it's because people with dementia often have a low tolerance for social interaction and need to rest.

Think about how your dad really is now, and what sort of environment will work best for him.

 

[Beate]

Expensive care homes really aren't any better than cheaper ones, they just dress themselves up more nicely. It's all about staff and interaction, cleanliness (no smell of wee!) and what behaviour they can cope with. Threadbare carpets don't matter. There will always be some activities as each home should have an activities coordinator but they will taylor it to their clientele, and that clientele might quite like to doze in high backed chairs for half the day.

He needs to have his needs met - how beautiful the visitors find the surroundings really shouldn't come into it, because it's superficial.

 

[Lookingafter]

My FIL and MIL have just entered a care home together and this too has been playing on my mind so thank you for the great insights.

My replies to posts about them being safe and looked after wasn’t enough for me but to quote @canary “Their world is not our world” has stuck with me. This I will remember - I’ve left tonight feeling much happier.

Thank you x

 

[Xeenies]

Expensive care homes really aren't any better than cheaper ones, they just dress themselves up more nicely. It's all about staff and interaction, cleanliness (no smell of wee!) and what behaviour they can cope with. Threadbare carpets don't matter. There will always be some activities as each home should have an activities coordinator but they will taylor it to their clientele, and that clientele might quite like to doze in high backed chairs for half the day.

He needs to have his needs met - how beautiful the visitors find the surroundings really shouldn't come into it, because it's superficial.

Thank you for the reply. It isn’t easy, these threads have helped A LOT. The only difference is if dad was better he’d want to be somewhere nice and although I don’t think the expensive places are the solution I do feel appearance is also a reflection of the attitudes of management. In some ways at least. If everything looks dated and ratty I worry about the nature of the care but I guess you have to balance everything.

 

[canary]

If everything looks dated and ratty I worry about the nature of the care

It would seem logical, but it doesnt work like that in reality.
Many of the expensive "upmarket" homes put their money in the decor and facilities and scrimp on the care - either fewer carers, or not so well trained and they mitigate this by having residents who wont be any trouble. If your care home has upholstered furniture you wont want people with incontinence sitting on them. If you want to give a good impression to relatives you dont want someone who is going to shout or be aggressive. If youve got big pot plants you dont want some gentleman who is going to wee in them. If you dont have many staff you dont want people that you have to watch all the time. So, you see, they get rid of all the people who might make them look bad.

Mum was in a care home that was dated and shabby and when I first looked at it I mentally discounted it. She ended up there, however as a reablement placement after a TIA landed her in hospital. At the end of this reablement period it had become obvious to me that it was exactly the right place for her. The care was wonderful and mum was happy there. They looked after her for three years until she passed away there and the manager and several of the carers also came to her funeral. It takes a bit of getting used to a care home for dementia, but once I learned to look beyond the decor I could see that it was homely and the carers really did care. I have some very happy memories of the time while mum was there.

As someone said to me - better good care in a shabby home, than poor care in a beautiful one.

 

[Xeenies]

It would seem logical, but it doesnt work like that in reality.
Many of the expensive "upmarket" homes put their money in the decor and facilities and scrimp on the care - either fewer carers, or not so well trained and they mitigate this by having residents who wont be any trouble. If your care home has upholstered furniture you wont want people with incontinence sitting on them. If you want to give a good impression to relatives you dont want someone who is going to shout or be aggressive. If youve got big pot plants you dont want some gentleman who is going to wee in them. If you dont have many staff you dont want people that you have to watch all the time. So, you see, they get rid of all the people who might make them look bad.

Mum was in a care home that was dated and shabby and when I first looked at it I mentally discounted it. She ended up there, however as a reablement placement after a TIA landed her in hospital. At the end of this reablement period it had become obvious to me that it was exactly the right place for her. The care was wonderful and mum was happy there. They looked after her for three years until she passed away there and the manager and several of the carers also came to her funeral. It takes a bit of getting used to a care home for dementia, but once I learned to look beyond the decor I could see that it was homely and the carers really did care. I have some very happy memories of the time while mum was there.

As someone said to me - better good care in a shabby home, than poor care in a beautiful one.

You are right. I know. But I also know dad wouldn’t want to be anywhere shabby and we want a balance. Posh care home doesn’t matter but we don’t want him somewhere shabby.

 

[canary]

Im not saying dont go for a "posh" care home - Im just saying be careful and warning you of the pit-falls. Some of the more upmarket ones also have good care (some people on here have relatives in this type), but oh my gosh they are expensive and I dont honestly know how important their surroundings are anymore. You have to look at what they need now, not what you would like for yourself, or even what they would once have liked.

 

[Xeenies]

Im not saying dont go for a "posh" care home - Im just saying be careful and warning you of the pit-falls. Some of the more upmarket ones also have good care (some people on here have relatives in this type), but oh my gosh they are expensive and I dont honestly know how important their surroundings are anymore. You have to look at what they need now, not what you would like for yourself, or even what they would once have liked.

I know.. we probs can’t afford the posh ones tbh £1450 a week!!!!!

 

[canary]

Yes, I know. The home mum was in was almost half that. Dont immediately discount the cheap ones.

 

[Beate]

If a care home is shabby it's, and I hope that doesn't offend, because of people with dementia living there, who make messes, bang into walls and destroy furniture without realising. Would you rather money is spent on good, caring staff and nice food for the residents or on constantly repainting the walls and replacing the carpets?

 

[Xeenies]

If a care home is shabby it's, and I hope that doesn't offend, because of people with dementia living there, who make messes, bang into walls and destroy furniture without realising. Would you rather money is spent on good, caring staff and nice food for the residents or on constantly repainting the walls and replacing the carpets?

I don’t think that would happen. I’d hope they’d keep a balance. We won’t place dad somewhere that is in that bad condition, as it could also be argued they’re not managed well. I’d hope a balance. We want it all but we will never place dad somewhere super ****. That’s an insult to him, whether he’s aware or not.

 

[Xeenies]

Yes, I know. The home mum was in was almost half that. Dont immediately discount the cheap ones.

What the social worker told us is that some homes have “LA funded” beds so they’re all the same except say they give some beds at a discounted rate to the LA to guarantee some business and the left over beds are uped in price to account for the LA discount (ie if a home has some LA beds but you’re fully paying, you effectively have to pay the subsidy of the LA bed).

 

[canary]

The LA funded beds are for people who have less than £25,000 savings and therefore become LA funded.
You are right that they get the beds at a discounted rate so the self-funders are effectively subsidising them and its a very sore point among people who are self-funded.
However, even if you are LA funded and the care home gives the LA discounted rates the care home will still not usually get enough and will charge "top-up" fees. These are additional fees that cannot be paid out of the person with dementias savings - it has to come from a third party, usually family. Most families would be hard pushed to find the top-up fees and they can increase quite dramatically as care increases, so you have to be very careful before going down this route.
The LA only has to find one care home that will accept the LA rates and not charge top-up fees for them to fulfil their legal obligation, so if your person with dementia has no savings and you cannot afford top-ups, there is very little choice