Too "aware" to be in a care home?

Jenni_B

Registered User
Aug 24, 2019
104
France
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.
They sound very similar indeed! Yep, my sister is cleaning the bathroom floor several times a day and night too. He needs help cleaning himself up afterwards too, but is refusing it so far, even from my sister. She has to take him everywhere with her, including the hairdressers! It's just dreadful. I don't know how any of you cope, truly I don't.
 

Jenni_B

Registered User
Aug 24, 2019
104
France
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.
Thanks. I was just reading about those on another thread. I'll have to ask my sister. Not familiar with the name but it sounds like something I think they may have tried. If so, it didn't work, unfortunately.
 

canary

Registered User
Feb 25, 2014
11,306
South coast
Honestly, @Jenni_B , Im thinking that he is less aware than your sister thinks and is using strategies like keeping your sister in eyeballing range to try and make sense of his world. He needs constant reassurance and is looking to your sister, but he could well be OK with other people around. When you go away on holiday with them, try getting your sister to really pop out for a while and see whether he will accept you telling him that this is what she has done.
 

Tiller Girl

Registered User
May 14, 2012
96
Yes, she has the full AA.
Jenni

I’m in a very very similar situation to your sister so I know exactly how she feels. I have also toyed with getting respite but I chicken out every time. My daughter even offered to have him for a few days and I declined that. My OH is 74 and I’m 66 so similar ages too. My OH would be incapable of living on his own although he thinks there’s really nothing wrong with him. He doesn’t drink or eat unless I give it to him. He can’t shave anymore and has a shower under duress!

A few years ago I introduced him to Millie Marrotta’s adult colouring books. I sat with him with coloured pencils and we completed the pictures together with a book each to start with and then slowly progressed to just him colouring them alone. Now he will sit all day , everyday just colouring. He can also do small jobs like washing up....not very well and he likes to ‘look after the dogs’ so he’ll sit with them if I need to pop to the shop. I have a small whiteboard that I leave messages on so he knows where I am. I usually include an instruction or a time I’ll be back ...depends really as every situation can be different.

However.....and this sounds really bad but I’m sure people will understand, last year my OH heart consultant gave him 2to 3 years to live or sudden death. So in a way this has made me feel that I should make his remaining years peaceful and comfortable. I’m sure that if I did have respite in a care home it would see him off to be honest and I don’t want it to be like that.

If he didn’t have the serious heart problem then I think I would consider having respite every few months or however regularly I felt the need for it because I would see the future as very bleak. As my daughter keeps telling me ...I need to think of myself too. That’s hard but also very true.

If you think your sister would benefit by speaking to me personally please contact me and we can maybe arrange contact via social network etc
 

mickeyplum

Registered User
Feb 22, 2018
119
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!)
Reading about your sister's situation was as if you were describing mine. My husband would have to be in a strait-jacket to get him into a home, and then he'd escape.
The difference is, I am 85 and my husband with vascular dementia is 91. I've sometimes thought how much easier if would be if we were both younger. I would have so much more energy and patience and be in better health myself.
But then I've realised how much harder it would be in other ways. Your sister is still a young woman by today's standards and should be enjoying a full life instead of being worn into the ground as a carer. I've already had that full life with my husband and as boring and arduous as my days are now, I don't feel like life has passed me by. Yes he can only walk slowly but it doesn't matter because I actually am only able to walk slower than him.
Our TV viewing is limited to the news, which I follow but he doesn't, boring Westerns which he always loved but now I have to explain the plot as it goes along, and his never-to be-missed quiz show Tipping Point. He knows nothing about the format but loves to watch who is winning and if they hit the jackpot.
All this info is no use to your sister. I'm really sorry about that. I just wanted to say how much harder it must be for her than for me. I do wish her well and admire you for your loving efforts to try and help them both
 

DesperateofDevon

Registered User
Jul 7, 2019
2,552
Yep Mums incontinent, has been for years!
Unable to cook or clean, can’t be bothered to shower, yet she is deemed capable & doesn’t like to be told what to do.
The paranoia & hallucinations are still present but even a low grade UTI sends her off her legs. We lurch from crisis to crisis- it’s not nice but it is what it is!
Mums had hospital admissions several times, a falls risk ( thank god she’s got soft bones!!!) & bitterly complains about not being able to go any where- yet won’t socialise with ‘old people’!
She won’t attend memory cafe/ clinic, it’s a consultant or nothing.
Mum now talks about me looking after her & her moving up closer to me! Until I get definitive diagnosis & care sorted that’s not going to happen!
Just because my Great grandmother lived with her as a child she thinks I’m going to look after her !
Um ..... no!
My Mum didn’t move my Granny or Grandad in with us, infact I was a child carer after school & during holidays. Yes my Mum needed time away alone or with my Dad. Meanwhile I slopped out, & did things no one under the age of 16 should have to do!!
I’ve been a dutiful loving daughter, but the stress on my marriage is showing. My kids are fed up with me running around after her & now my health is in decline!!!
Mums 88 - she will have to live with the consequences of her decisions until a time where the safeguarding we put in place isn’t thrown back at us!
 

Lawson58

Registered User
Aug 1, 2014
1,984
Victoria, Australia
Hi Jenni,

I read your first post and your description of your BIL and I don't think he is 'aware' in the way you perhaps think he is. I believe he is in total denial of his problems and his condition but if he is unable to converse or do much for himself and from your other description, then that is a different thing entirely and is the default position of many people with dementia.

My husband has been declining slowly since his diagnosis over five years ago but he he still plays bridge, Skypes his siblings in the UK, can prepare simple food and takes care of all of his personal hygiene. There are many things he cannot do but I would have to say that he is still quite aware and I couldn't even think about care for him. Respite for me would be wonderful but he certainly sounds far more competent than your BIL.

Of course, BIL is going to resist respite but this is an issue about your sister's well being and this makes everything so hard for everybody. I guess it comes down to the difference between needs and wants.
 

AliceA

Registered User
May 27, 2016
2,628
Every age brings it own problems, I empathise with Mickyplum. But I sympathise with younger people too.
In my experience of having a respite together, my husband saw it as a holiday, I was able to have a room away from the bustle but I observed. My own husband settled in to the routine and was happy to have a flock of people caring from him. The activities are not about folding towels, but more art, music, animal visits even discussion about what is in the papers. There was a lot of laughter and genuine caring.
We must not imagine we are the person going in, so I agree grand hotel types appeal to the family more than the needs of the person warrant.
I am in the same position but I need to find a place near so I can visit and the backing of SS as we cannot self fund fully while I need a roof over my head. My husband seems very aware one moment but not another your BIL sounds the same. I must get back on duty, my daughter has kindly come in so I could sleep, I had a very broken night and a very busy morning. It is just too tempting to stay put.
I used a trick from when I had teenagers, I put soothing music on loud enough to block the sound from the rest of the rooms.
 

Jenni_B

Registered User
Aug 24, 2019
104
France
Honestly, @Jenni_B , Im thinking that he is less aware than your sister thinks and is using strategies like keeping your sister in eyeballing range to try and make sense of his world. He needs constant reassurance and is looking to your sister, but he could well be OK with other people around. When you go away on holiday with them, try getting your sister to really pop out for a while and see whether he will accept you telling him that this is what she has done.
What you say about his awareness makes sense, and this is a good idea. I will try this. Thanks.
 

Jenni_B

Registered User
Aug 24, 2019
104
France
Jenni

I’m in a very very similar situation to your sister so I know exactly how she feels. I have also toyed with getting respite but I chicken out every time. My daughter even offered to have him for a few days and I declined that. My OH is 74 and I’m 66 so similar ages too. My OH would be incapable of living on his own although he thinks there’s really nothing wrong with him. He doesn’t drink or eat unless I give it to him. He can’t shave anymore and has a shower under duress!

A few years ago I introduced him to Millie Marrotta’s adult colouring books. I sat with him with coloured pencils and we completed the pictures together with a book each to start with and then slowly progressed to just him colouring them alone. Now he will sit all day , everyday just colouring. He can also do small jobs like washing up....not very well and he likes to ‘look after the dogs’ so he’ll sit with them if I need to pop to the shop. I have a small whiteboard that I leave messages on so he knows where I am. I usually include an instruction or a time I’ll be back ...depends really as every situation can be different.

However.....and this sounds really bad but I’m sure people will understand, last year my OH heart consultant gave him 2to 3 years to live or sudden death. So in a way this has made me feel that I should make his remaining years peaceful and comfortable. I’m sure that if I did have respite in a care home it would see him off to be honest and I don’t want it to be like that.

If he didn’t have the serious heart problem then I think I would consider having respite every few months or however regularly I felt the need for it because I would see the future as very bleak. As my daughter keeps telling me ...I need to think of myself too. That’s hard but also very true.

If you think your sister would benefit by speaking to me personally please contact me and we can maybe arrange contact via social network etc
So sorry to hear all this, Tiller Girl. Without wishing such situations on anyone, it's nevertheless helpful to find others in a similar situation, if that makes sense & doesn't sound awful. Your reason for not wanting your OH to go into respite care is totally understandable.

Great that the colouring books work! If only my sister could find some activity that would keep him amused when bored, so she could get on with something else for a while - even paperwork. I think, in fact, she tried the colouring books some time back but either he couldn't manage even those or else decided they were "silly" too. Might be worth another try now, because he will most likely have forgotten the last attempt and could be more receptive now. However, drawing or art was never his thing in the past. I know you don't need skill per se for these colouring books, but I do wonder if it's harder for PWDs to take up something they've never done/had natural ability for in the past? There's no unconscious hard-wiring, if you like, to draw upon, and now it's too late to learn something new, even if it's simply colouring within lines & doesn't matter if you mess it up.

In his youth, my BIL played rugby so I think he must have had good hand-eye co-ordination. Sometimes, these days, he doesn't see what's right in front of him (thinks his plate is empty when there's still food on it, or can't see the dog that's on the end of the lead in his hand). But at other times he can surprise you. Last time I was over (May), we were walking through woods with the dogs. One of them loves to run after a ball and my sister has one of those ball-throwing thingies. Although BIL would lose track of where the ball landed, and not see it or think to pick it up if the dog dropped it at his feet, he was mostly very accurate at launching it from the gizmo. Even when the track narrowed, with deep vegetation either side, he managed to aim the ball straight down the track. So I wonder if that's because he doesn't have to think how to throw - he isn't learning a new skill. (Am not sure if they use this in the garden as well. Will check.) I may be talking rubbish of course - it might just have been a good day.

And thank you for your very kind offer for my sister to contact you. I'll ask her, although she has never been one for forums or social networking of any kind, so maybe don't hold your breath! :)
 

Jenni_B

Registered User
Aug 24, 2019
104
France
Yep Mums incontinent, has been for years!
Unable to cook or clean, can’t be bothered to shower, yet she is deemed capable & doesn’t like to be told what to do.
The paranoia & hallucinations are still present but even a low grade UTI sends her off her legs. We lurch from crisis to crisis- it’s not nice but it is what it is!
Mums had hospital admissions several times, a falls risk ( thank god she’s got soft bones!!!) & bitterly complains about not being able to go any where- yet won’t socialise with ‘old people’!
She won’t attend memory cafe/ clinic, it’s a consultant or nothing.
Mum now talks about me looking after her & her moving up closer to me! Until I get definitive diagnosis & care sorted that’s not going to happen!
Just because my Great grandmother lived with her as a child she thinks I’m going to look after her !
Um ..... no!
My Mum didn’t move my Granny or Grandad in with us, infact I was a child carer after school & during holidays. Yes my Mum needed time away alone or with my Dad. Meanwhile I slopped out, & did things no one under the age of 16 should have to do!!
I’ve been a dutiful loving daughter, but the stress on my marriage is showing. My kids are fed up with me running around after her & now my health is in decline!!!
Mums 88 - she will have to live with the consequences of her decisions until a time where the safeguarding we put in place isn’t thrown back at us!
Crikey. That's all very tough. Good for you standing your ground. The psychological blackmail, conscious or otherwise, is another very hard thing to cope with, it seems to me.
 

Jenni_B

Registered User
Aug 24, 2019
104
France
Hi Jenni,

I read your first post and your description of your BIL and I don't think he is 'aware' in the way you perhaps think he is. I believe he is in total denial of his problems and his condition but if he is unable to converse or do much for himself and from your other description, then that is a different thing entirely and is the default position of many people with dementia.

My husband has been declining slowly since his diagnosis over five years ago but he he still plays bridge, Skypes his siblings in the UK, can prepare simple food and takes care of all of his personal hygiene. There are many things he cannot do but I would have to say that he is still quite aware and I couldn't even think about care for him. Respite for me would be wonderful but he certainly sounds far more competent than your BIL.

Of course, BIL is going to resist respite but this is an issue about your sister's well being and this makes everything so hard for everybody. I guess it comes down to the difference between needs and wants.
I think you've hit the nail on the head with Needs versus Wants. :)
 

Jenni_B

Registered User
Aug 24, 2019
104
France
Reading about your sister's situation was as if you were describing mine. My husband would have to be in a strait-jacket to get him into a home, and then he'd escape.
The difference is, I am 85 and my husband with vascular dementia is 91. I've sometimes thought how much easier if would be if we were both younger. I would have so much more energy and patience and be in better health myself.
But then I've realised how much harder it would be in other ways. Your sister is still a young woman by today's standards and should be enjoying a full life instead of being worn into the ground as a carer. I've already had that full life with my husband and as boring and arduous as my days are now, I don't feel like life has passed me by. Yes he can only walk slowly but it doesn't matter because I actually am only able to walk slower than him.
Our TV viewing is limited to the news, which I follow but he doesn't, boring Westerns which he always loved but now I have to explain the plot as it goes along, and his never-to be-missed quiz show Tipping Point. He knows nothing about the format but loves to watch who is winning and if they hit the jackpot.
All this info is no use to your sister. I'm really sorry about that. I just wanted to say how much harder it must be for her than for me. I do wish her well and admire you for your loving efforts to try and help them both
Very moved by your words. Thank you so much, mickeyplum. Wishing you all the best.
 

Jenni_B

Registered User
Aug 24, 2019
104
France
Every age brings it own problems, I empathise with Mickyplum. But I sympathise with younger people too.
In my experience of having a respite together, my husband saw it as a holiday, I was able to have a room away from the bustle but I observed. My own husband settled in to the routine and was happy to have a flock of people caring from him. The activities are not about folding towels, but more art, music, animal visits even discussion about what is in the papers. There was a lot of laughter and genuine caring.
We must not imagine we are the person going in, so I agree grand hotel types appeal to the family more than the needs of the person warrant.
I am in the same position but I need to find a place near so I can visit and the backing of SS as we cannot self fund fully while I need a roof over my head. My husband seems very aware one moment but not another your BIL sounds the same. I must get back on duty, my daughter has kindly come in so I could sleep, I had a very broken night and a very busy morning. It is just too tempting to stay put.
I used a trick from when I had teenagers, I put soothing music on loud enough to block the sound from the rest of the rooms.
Alice, I was reading your thread in the Tea Room, from the beginning, earlier today. Your description, there and in your post here, of the time you spent with your husband in respite is very heartening.

I think it may be a question of my sister trying to find the right care home - which may be challenging because I think of the 18 I telephoned a few weeks ago (on a basic fact-finding mission, not to actually book anything), only one had a room available at that time. And of course they can't take advanced bookings, as it were, because they don't set rooms aside specifically for respite (at least, none of those I spoke to did - understandable from a business perspective).
 

Jenni_B

Registered User
Aug 24, 2019
104
France
@AliceA By the way, thanks for this useful reminder. "We must not imagine we are the person going in, so I agree grand hotel types appeal to the family more than the needs of the person warrant."
 

Lady M

Registered User
Sep 15, 2018
292
Essex
I think both OH and I need some respite! Unfortunately we are not self funding, and I am having difficulty with SS. Unable to contact on previous named SW number so rang on duty office...as OH has maximum calls and we live in ‘assisted living’ facility....no one seems to care ...! haven’t had any responses!
The care staff here are really good but I feel the mental stress and constant worry are now overwhelming!
My home is not my own and my life is non existent but like stated here my OH is quite ‘ with it’ in his own surroundings.....
A few hours isn’t what I am looking for I am thinking a few days and nights!!!! To recharge!
Anyone know if something like this available through the SS.
Thanks in advance!