Too "aware" to be in a care home?

[Jenni_B]

My sister (64), sole carer for her husband (71), is at breaking point. Because I live in France I can't offer regular physical assistance or respite, so am doing other things, such as research etc with people like the Alz Soc, which she doesn't have time, opportunity or energy for herself.

I have a question regarding my BIL's apparent "betwixt & between" level of awareness - a state he's been in for years now and which, in a horrible way, is making choices that are already difficult for her even harder. I'd love to hear your thoughts. Please bear with me while I give you some details that may help you to comment. Sorry this will be rather long!

My BIL's symptoms started showing in 2003, when he had to retire at 55. Diagnosed with AD in 2011. My sister (E) gave up work in 2012 to look after him and is now close to mental, physical & emotional breakdown. I'm sure this is familiar to many of you.

She has just triggered LA involvement and awaits a date for assessments (as urgent case).

However, although she feels unable to continue caring for him at home for much longer, she worries that even if the LA assess him as eligible for care, he is still too "aware" for a care home to be appropriate, either for short respite stays or full-time. This week, for the first time, she visited a home (luxury one they couldn't afford for more than a few weeks and the LA wouldn't fund), with a view to respite stays. She left in despair. "The place was lovely, people nice, but he would hate it, even if I could get him there. What would he DO all day? I can't do it to him. But I can't go like this either."

My BIL should meet all the eligibility criteria in terms of mental capacity (last cognitive ability test score 16/30 - so is in Stage 6), task capability, safety issues etc. He couldn't look after himself at home and needs 24/7 care.

BUT most of the time he doesn't realise how bad he has got. Since July he has reluctantly attended a Day Centre once a week (this, plus some family help earlier this year is the first respite E has ever had). He considers himself to be nowhere near as bad as all the other (much older) people, and finds all the "silly" activities "beneath" him. Although much of the time he behaves like a toddler, he's not yet at the stage where he will happily fold towels, rummage in a box of life memorabilia, complete a jigsaw designed for a 2-year-old... Doesn't want to play dominoes or bingo etc (I suspect because, in truth, he couldn't do them without help!). But nor can he cope with more adult games like scrabble or even simple crosswords.

He used to be an English teacher but can't now read or even sign his name. He likes the garden but without considerable help can't do much in it. Nor is he especially sociable. He never was. The only person he wants to talk to is my sister and he's unhappy if she isn't in the same room as him all the time. Conversation is repetitive, superficial or non-existent... as I'm sure you can imagine. Music can irritate. Apart from a daily dog walk, his only entertainment is the TV (but only sport, game shows and the News), and he can't really follow those. My sister can't watch what she would like because he gets frustrated and angry when he can't follow those programmes. It's easier for her to avoid a sulk. Evenings, therefore, are especially boring and painful.

He would resist going into a care home because he is unaware of how dependent he is on E. (She doesn't have medical POA, so the LA would have to take the "best interests" decision for him.)

My outsider's view is that he has little quality of life at home, however - in large part because E is running on flat batteries. Through no fault of her own, she no longer has the energy or patience needed to keep him stimulated and happy. Painfully slow dog walks, watering plants or sweeping leaves in the garden and dozing in front of the TV isn't a great life.

E also needs a life but has none. She needs longer spells of respite than occasional sitting help could provide. Periods of agency in-home care is one option, but that would mean she would have to go away somewhere - hugely expensive and impractical. Moving her husband into a care home at regular intervals for a week or two might be best, if possible (rooms hard to come by though?). But would short stays prove more destabilising for him? I believe it can take weeks for someone to settle into that environment (especially if they're resistant in the first place)?

So... Is my sister right to think that this "betwixt & between" situation of her husband is unusual - perhaps because he has early-onset AD so his rate of physical deterioration is slower than for most? - and that a care home would be inappropriate until his "awareness" is much reduced so he more readily accepts his situation and the activities on offer there? Or is this relatively common and E "simply" needs to try and put aside her conscience and feelings of guilt about breaking her promise to care for him to the end and abandoning him (though she would, of course, visit.)?

I feel her situation can't be unique. Would welcome any thoughts. (If you got to the end of this, thanks!)

 

[jaymor]

My husband was diagnosed at 62 but had been having problems for several years before which we put down to stress of his job. He was at home with me as his sole Carer for 7 years when we had several crises and he was taken into an assessment unit and within two weeks we were told there was no way he could return home, he went into to a nursing home with 1:1 care, 24 hours a day.

He had lost me as his wife 2 years before and I became the lady who looked after him while he waited for me to come home. He could have a conversation with me and do some jobs with me guiding him through every stage. We went out every day and he could walk for miles. To an outsider there looked to be nothing wrong with him. I was convinced that the assessment would sort his medication out and he would be back home but I was wrong.

My husband looked as if he could do far more than he could, he believed that he could but Alzheimer’s had robed him of the ability to do things and I think we see things that are on offer as beneath them but they aren’t. Simple tasks that they can do and feel good about are better than tasks that they can’t manage causing them anxiety and aggression.

The needs assessment will let your sister know where her husband is and what help he needs. If it is full time care then that’s what is best for him. She will still be caring for him but in a different way, a way that will allow them both a better way of living. I know I felt I had gone back to being a wife and not a worn out Carer.

 

[Beate]

"Painfully slow dog walks, watering plants or sweeping leaves in the garden and dozing in front of the TV isn't a great life."

Maybe not to you but for someone with a brain disease this might be heaven - not having to think too much and just relax. In my opinion, stimulation is overrated. Often PWDs can't cope with too much. They need peace and naps.

And please don't look at "luxury" care homes. Look at small homely places that don't smell of wee with nice caring staff, and overlook shabby carpets. They don't matter. Find a nice one for an initial respite stay with the view of making it permanent, but don't tell him that. Sell it as a holiday.

 

[Jenni_B]

My husband was diagnosed at 62 but had been having problems for several years before which we put down to stress of his job. He was at home with me as his sole Carer for 7 years when we had several crises and he was taken into an assessment unit and within two weeks we were told there was no way he could return home, he went into to a nursing home with 1:1 care, 24 hours a day.

He had lost me as his wife 2 years before and I became the lady who looked after him while he waited for me to come home. He could have a conversation with me and do some jobs with me guiding him through every stage. We went out every day and he could walk for miles. To an outsider there looked to be nothing wrong with him. I was convinced that the assessment would sort his medication out and he would be back home but I was wrong.

My husband looked as if he could do far more than he could, he believed that he could but Alzheimer’s had robed him of the ability to do things and I think we see things that are on offer as beneath them but they aren’t. Simple tasks that they can do and feel good about are better than tasks that they can’t manage causing them anxiety and aggression.

The needs assessment will let your sister know where her husband is and what help he needs. If it is full time care then that’s what is best for him. She will still be caring for him but in a different way, a way that will allow them both a better way of living. I know I felt I had gone back to being a wife and not a worn out Carer.

Thanks, Jaymor. Interesting to hear your story. It's my BIL (rather than my sister & I) who considers tasks and activities at the Day Centre are beneath him. Part of him is still aware enough to know that he should be able to do more than he actually can. He is frustrated when he can't do more things he knows he used to do (such as changing TV channels or adjusting the volume), and I think he feels humiliated if offered something he realises a child would normally do - especially if he might struggle even with that. He sometimes offers to help in the kitchen. But even washing mushrooms or chopping a vegetable is beyond him without a lot of help, and so he feels hopeless again. At the moment it seems impossible to find any task he can feel good about. Once he gets through this level of awareness of hopelessness, it might be easier for him and therefore my sister, but it could last for sometime yet. As you say, the needs assessment should help. I feel he would be better off in a care home, where trained staff have the time, energy and strategies for involving PWAs in simple activities.

 

[TNJJ]

He sounds like my dad.He won’t go out and meet people.Neither will he go to the care home more than once a month for a bath.He is aware and very manipulative.He likes to go out with me.But I only do it when I feel able.(He is in a wheelchair to go out and has a catheter)Dad doesn’t like “Old People “.He is 86 .He often tells me he is “bored”.Well,I am afraid he is going to remain so as I can only do so much.It wouldn’t be so bad if he compromised but he won’t.So you are not the only one.But until this stage has passed this will be his life.I have to be very firm with him otherwise I would be running around like a headless chicken.I hope things change soon.

 

[Jenni_B]

"Painfully slow dog walks, watering plants or sweeping leaves in the garden and dozing in front of the TV isn't a great life."

Maybe not to you but for someone with a brain disease this might be heaven - not having to think too much and just relax. In my opinion, stimulation is overrated. Often PWDs can't cope with too much. They need peace and naps.

And please don't look at "luxury" care homes. Look at small homely places that don't smell of wee with nice caring staff, and overlook shabby carpets. They don't matter. Find a nice one for an initial respite stay with the view of making it permanent, but don't tell him that. Sell it as a holiday.

Well he gets plenty of peace and naps! And he is exhausted after the Day Centre. But a bit more variety might be a good thing?

Your comment about luxury versus small & homely homes is very good to know and I will pass it on. Must admit of the homes I've spoken to on the phone, I got a much warmer feeling about some of the smaller ones. Thanks.

 

[Jenni_B]

He sounds like my dad.He won’t go out and meet people.Neither will he go to the care home more than once a month for a bath.He is aware and very manipulative.He likes to go out with me.But I only do it when I feel able.(He is in a wheelchair to go out and has a catheter)Dad doesn’t like “Old People “.He is 86 .He often tells me he is “bored”.Well,I am afraid he is going to remain so as I can only do so much.It wouldn’t be so bad if he compromised but he won’t.So you are not the only one.But until this stage has passed this will be his life.I have to be very firm with him otherwise I would be running around like a headless chicken.I hope things change soon.

Thanks TNJJ. Good luck with your dad!

 

[Beate]

Well he gets plenty of peace and naps! And he is exhausted after the Day Centre. But a bit more variety might be a good thing?

Your comment about luxury versus small & homely homes is very good to know and I will pass it on. Must admit of the homes I've spoken to on the phone, I got a much warmer feeling about some of the smaller ones. Thanks.

From my experience, PWDs aren't all that keen on variety. They like routine, familiarity and repetition of tasks they know.

 

[canary]

My OH went into respite for a week earlier this year.

He is extremely aware - he knows where and when he is, who people are and what is happening, so I did not think that i would be able to persuade him. I found a nice small care home that had a "hotel" vibe (it used to be a hotel) overlooking the sea and sold it to him as a holiday. The manager was totally on board with this and said that you phone up and book a room, just like any other hotel, except that there are nurses around. Much to my surprise OH loved it and even joined in with activities. Im hoping he will go again later in the year.

 

[Jenni_B]

My OH went into respite for a week earlier this year.

He is extremely aware - he knows where and when he is, who people are and what is happening, so I did not think that i would be able to persuade him. I found a nice small care home that had a "hotel" vibe (it used to be a hotel) overlooking the sea and sold it to him as a holiday. The manager was totally on board with this and said that you phone up and book a room, just like any other hotel, except that there are nurses around. Much to my surprise OH loved it and even joined in with activities. Im hoping he will go again later in the year.

Thank you very much, canary. So pleased to hear it worked for you and that gives me a lot of hope. I will pass it on. Wishing you all the best for later in the year.

 

[Jenni_B]

From my experience, PWDs aren't all that keen on variety. They like familiarity and repetition of tasks they know.

OK, Thanks. We're learning as we go, so this is all very useful. Appreciate your help.

 

[sjm80]

My OH went into respite for a week earlier this year.

He is extremely aware - he knows where and when he is, who people are and what is happening, so I did not think that i would be able to persuade him. I found a nice small care home that had a "hotel" vibe (it used to be a hotel) overlooking the sea and sold it to him as a holiday. The manager was totally on board with this and said that you phone up and book a room, just like any other hotel, except that there are nurses around. Much to my surprise OH loved it and even joined in with activities. Im hoping he will go again later in the year.

This has all been SO helpful to read, thank you. My mother is the PWD and she always wans to go to hotels, and packs her case of stuff and best clothes to go to "the hotel", so I think we could sell a visit to a place as a hotel visit. The only issue would be that without my dad there with her, I'm not sure how she would go, she tends to panic a bit if she doesn't know where he is or have someone familiar around her. So he doesn't get any time off unless one of us is available to sub in. Maybe just small steps at first.

 

[canary]

The only issue would be that without my dad there with her, I'm not sure how she would go, she tends to panic a bit if she doesn't know where he is or have someone familiar around her.

The staff will be there to direct, reassure her and distract her. When you go and look at a place you could ask the manager how they would deal with this. If the staff know their onions they will say something like "Oh, hes just popped out to the shops for a while. Would you like a cup of tea?"

 

[Jenni_B]

The staff will be there to direct, reassure her and distract her. When you go and look at a place you could ask the manager how they would deal with this. If the staff know their onions they will say something like "Oh, hes just popped out to the shops for a while. Would you like a cup of tea?"

I think my sister will have the same potential problem with her husband. Not sure he will buy staff strategy like "she's just popped out..." etc, but it's definitely worth a try because sometimes I think he may be less aware than my sister thinks. (Easy for me to have a view when I'm not the carer and only see them about twice a year. I'll be over there soon to help with their trip to Northumberland for a week. It's an area they always used to holiday in and my BIL is obsessed with going there "one last time". We'll be staying in a cottage and it will be interesting to compare his response to a different environment - albeit with my sister - with last year's "one last time" trip.) I'll also suggest E asks about this when she visits one or two more homes. Thanks.

 

[DesperateofDevon]

My Mum is like your BIL, fluctuating capacity & it’s extremely frustrating as there doesn’t seem to be a good solution to that.
My Dad went into care home in November 2018 - it divides its days up punctuated by meals & tea/ coffee breaks. There are different activities morning & afternoon everyday. With hairdressers coming in weekly, choir practice, gardening club, cooking club, day trips out ( optional extra) cocktail tasting, a bar, bingo, musicians visiting , games club, regular events at the home etc. Or there are quiet areas, the rooms you can personalise with your own furniture, pictures, tv etc.
Dad has a shot of whiskey every night before bed! I supply the whiskey often but the home will also get it in for him.
Honestly it’s lovely compared to how his life was.
But...
It wouldn’t be right for my Mum, with her fluctuating capacity in her good days she requires prompting & help. I can’t get her to agree to try lunch clubs as ‘ she doesn’t want to sit in a church hall ‘. So carers come in. Mum finds their presence intrusive!!! So the care package is now reduced, also Mum is always trying to prove that she doesn’t need them; ie - I don’t need a shower I’ve had a wash. I have had soup ( my mum hates soup!)
The same brioche bread has been in the bread bin for a month now,I check it each week I go down ( I live 125 miles away!)
Mums fiercely wants to be independent but I can’t find a compromise to allow this that doesn’t involve care coming into her home, or her participating in activities with other old people.
So my sympathies to your sister but it’s a stage that the PWD has to go through. But that doesn’t mean that your sister shouldn’t have a life. Lots of people talk about befrienders on here. Would that be an option? It’s something I am going to look into as Mum can be very negative with people she knows but does a great “hostess mode” - so I am wondering if that might be an option.
Age uk have support for carers clubs. Your sister sounds as if she needs that level of support, though BIL will need company while she’s out arranged; but age uk might have solutions to that,
Good luck
Ps
This forum is full of help & advice. It really does make all the difference

 

[canary]

@Jenni_B

My mum had Alzheimers and was in a care home, probably very similar to the one that DesperateofDevon's dad is in.
My OH, though, requires somewhere very different, because he is so aware. My OH wouldnt buy the "shes just popped out" line either, because he is aware enough to know where I am and would not not be looking for me or needing familiar people around. Unfortunately, he is not aware enough to comprehend his own needs and how much I have to do for him - he thinks that he is still able to do things and does not understand the need for respite. Hence the reason for "selling" it to him as a holiday.

I think its a good idea to check out what your BIL is like away from home. You may find that he is less aware than most people suspect. When they are at home, they have set routines and automatic responses; they often have strategies to cover up how little they understand. My OH has various set phrases and when you are talking to him he will nod his head as though he is following every word. I have only recently discovered that he does not take in, or misunderstands, most of what is said to him, but for a long time I taken in.

 

[Jenni_B]

My Mum is like your BIL, fluctuating capacity & it’s extremely frustrating as there doesn’t seem to be a good solution to that.
My Dad went into care home in November 2018 - it divides its days up punctuated by meals & tea/ coffee breaks. There are different activities morning & afternoon everyday. With hairdressers coming in weekly, choir practice, gardening club, cooking club, day trips out ( optional extra) cocktail tasting, a bar, bingo, musicians visiting , games club, regular events at the home etc. Or there are quiet areas, the rooms you can personalise with your own furniture, pictures, tv etc.
Dad has a shot of whiskey every night before bed! I supply the whiskey often but the home will also get it in for him.
Honestly it’s lovely compared to how his life was.
But...
It wouldn’t be right for my Mum, with her fluctuating capacity in her good days she requires prompting & help. I can’t get her to agree to try lunch clubs as ‘ she doesn’t want to sit in a church hall ‘. So carers come in. Mum finds their presence intrusive!!! So the care package is now reduced, also Mum is always trying to prove that she doesn’t need them; ie - I don’t need a shower I’ve had a wash. I have had soup ( my mum hates soup!)
The same brioche bread has been in the bread bin for a month now,I check it each week I go down ( I live 125 miles away!)
Mums fiercely wants to be independent but I can’t find a compromise to allow this that doesn’t involve care coming into her home, or her participating in activities with other old people.
So my sympathies to your sister but it’s a stage that the PWD has to go through. But that doesn’t mean that your sister shouldn’t have a life. Lots of people talk about befrienders on here. Would that be an option? It’s something I am going to look into as Mum can be very negative with people she knows but does a great “hostess mode” - so I am wondering if that might be an option.
Age uk have support for carers clubs. Your sister sounds as if she needs that level of support, though BIL will need company while she’s out arranged; but age uk might have solutions to that,
Good luck
Ps
This forum is full of help & advice. It really does make all the difference

Thanks for sharing your experiences with your mum and dad. How you cope, living 125 miles away from your mum, I can't imagine. Sounds very difficult.

Befrienders or companions(?) is a good idea, and something like this might help my sister a little on a weekly basis. But she also needs bigger chunks of time without him, preferably in the comfort of her own home. A month of uninterrupted sleep, in her own bed would be a good start. I think my BIL may be further ahead than your mum in terms of care needs, if not the awareness thing. Even though he is still mobile, can still use cutlery to feed himself, and can just about still shave and shower himself, he needs someone on hand 24/7. He has urinary incontinence, for one thing. I think nights are worse because, last I heard, he refuses to wear incontinence pants in bed. So my sister is regularly woken up because he has wet the bed, or he can't find the bathroom or doesn't get there in time (bathroom left swimming) ... doesn't clean himself properly afterwards... He has regular hallucinations too, sometimes several times a night. Daytime, he can't choose clothes for himself, needs help dressing, can't shop, prepare food or work a telephone or TV remote control, manage his meds... And he follows my sister around like a puppy follows its mum. She sometimes can't even go to the loo without him barging in, in a panic, "I couldn't find you, what are you doing?" If she weren't there all the time, no way could he manage on his own.

I'm getting the feeling, from replies here and other threads I've been reading, that he might adapt better than my sister fears to a care home situation. I think she'll only find out if she tries it.

 

[Guzelle]

He sounds at the same stage as my OH. But fortunately he is not I continent. He does often urinate on the bathroom floor though which I have to clean several times a day. He doesn’t wipe his bottom either when going to the toilet. He follows me everywhere and panics if he can’t find me! He hates being on his own but doesn’t want to come with me when I sometimes visit people and then is annoyed with me when I get back usually after about an hour. It’s difficult going to the hairdressers because if I have it coloured it can take 2 hours and he is quite nasty when I get back. He can’t remember where I have been.

 

[TNJJ]

Thanks for sharing your experiences with your mum and dad. How you cope, living 125 miles away from your mum, I can't imagine. Sounds very difficult.

Befrienders or companions(?) is a good idea, and something like this might help my sister a little on a weekly basis. But she also needs bigger chunks of time without him, preferably in the comfort of her own home. A month of uninterrupted sleep, in her own bed would be a good start. I think my BIL may be further ahead than your mum in terms of care needs, if not the awareness thing. Even though he is still mobile, can still use cutlery to feed himself, and can just about still shave and shower himself, he needs someone on hand 24/7. He has urinary incontinence, for one thing. I think nights are worse because, last I heard, he refuses to wear incontinence pants in bed. So my sister is regularly woken up because he has wet the bed, or he can't find the bathroom or doesn't get there in time (bathroom left swimming) ... doesn't clean himself properly afterwards... He has regular hallucinations too, sometimes several times a night. Daytime, he can't choose clothes for himself, needs help dressing, can't shop, prepare food or work a telephone or TV remote control, manage his meds... And he follows my sister around like a puppy follows its mum. She sometimes can't even go to the loo without him barging in, in a panic, "I couldn't find you, what are you doing?" If she weren't there all the time, no way could he manage on his own.

I'm getting the feeling, from replies here and other threads I've been reading, that he might adapt better than my sister fears to a care home situation. I think she'll only find out if she tries it.

Hi.Would he keep a conveen on.?It is like a condom but has a catheter bag attached overnight.District nurse will need to measure him.

 

[Jenni_B]

@Jenni_B

My mum had Alzheimers and was in a care home, probably very similar to the one that DesperateofDevon's dad is in.
My OH, though, requires somewhere very different, because he is so aware. My OH wouldnt buy the "shes just popped out" line either, because he is aware enough to know where I am and would not not be looking for me or needing familiar people around. Unfortunately, he is not aware enough to comprehend his own needs and how much I have to do for him - he thinks that he is still able to do things and does not understand the need for respite. Hence the reason for "selling" it to him as a holiday.

I think its a good idea to check out what your BIL is like away from home. You may find that he is less aware than most people suspect. When they are at home, they have set routines and automatic responses; they often have strategies to cover up how little they understand. My OH has various set phrases and when you are talking to him he will nod his head as though he is following every word. I have only recently discovered that he does not take in, or misunderstands, most of what is said to him, but for a long time I taken in.

Ha, yes, my BIL employs those strategies quite effectively too. I'm usually there for a week at a time and although he can chat ostensibly normally to begin with, about the weather, blackbirds, how much he has done in the garden(!) etc, it's noticeable how he can't maintain it so well by the end of my stay. It also becomes noticeable how he can't really follow group conversations for more than a few sentences, or follow a short list of instructions (eg. how to peel and chop an onion). Until now he has recognised me, but I believe at the moment he's asking, "When is that lady coming?" and "Have I met your sister?", so I'm prepared for him not to have a clue who I am at least some of the while this time. Hopefully he'll still feel safe around me though.