Mum now lucid, healthy and wants to "go home" - am I wrong to leave her in care home?

[Jany]

I just need to type to get these worries off my chest.

My mother was diagnosed with memory problems, about a year ago. She was prescribed Rivistigmine. She is 90, and in good physical health for her age.
But she'd had a couple a falls, and I don't live close, and she said she was lonely.
Carers came in but she told them to go away as she was fine.
She forgot to take her medication, and the food in the fridge was often off when I visited.
She sometimes got very depressed, alone in her large house. And of course I was worried sick that she'd fallen on the stairs. She had an alarm but didn't remember what it was for.

So, fearing a crisis, I moved her into residential care.
At the time she thought that was a good idea.

Distress and trauma followed: she wanted to go home. Phoned all the time. Awful.
Then she seemed to settle for a few weeks.

My sister and I are now getting organised to rent out her house to help pay the fees.

But now, this morning, my mother phoned me and insisted she wants me to take her home "as soon as possible". As far as I can work out, nothing specific has triggered this. It's just her, sitting in her chair. She was very rational. She wants to go home. She wants carers re-installed. Neighbours can do her shopping. It will all be how it used to be. "Why am I here in this expensive place, with people doing the cooking for me? I can do my own cooking!" She wants to be in her own house. "Is that too much to ask?" she says.
She said she "feels like a nothing" in the care home.
This is true: her house, where she lived with my late father, gave her a real identity. Even though she didn't do the garden, she felt as though she was "keeping it going".
In the care home, there is no equivalent.

Does anyone know a care home/residential care where they succeed in giving residents a purpose? My mother needs work to do, a role to fulfil. Any ideas how I can make that happen? She doesn't want to participate in the running of the home (sorting the laundry, for example, which is what I'd do if I were there), because she feels as though she's paying them to do that sort of thing!

It is probably true that with a superhuman effort, we could move her back home. I'd need to stop the actions in progress to rent the house. I'd need to find carers, re-engage the neighbours. Depending on how long she lives, we could afford carers. Social Services will not engage because she owns her own house and has savings, and because she is sort of OK, not in anything like the crises that are described by others on here. Her money will run out in about 2-5 years if we do this.

Am I simply being lazy, leaving her in the care home? I truly think it's the best solution for her. She's not going to get any younger. But she does have mental capacity. She's losing her short-term memory, but she can still reason.
And she's still my mother. When she tells me I have got to take her home `as soon as possible', it's really difficult to be objective about it.

Sorry to rant on. I know others have much worse, and life-threatening situations. It just helps to type. Thanks for reading.

 

[jeany123]

Just think of all the reasons your mum went into the CH, they have not gone away and would still be there if she did come home,
I think you know she is in the best place she is safe and well looked after,
You are definitely not being lazy , you are doing whats best for her,

 

[Spamar]

Does she really mean the home she has recently left , or some other home. Many revert to thinking of childhood homes as 'home'.

 

[Delphie]

Although I firmly believe that residential care can be a very good solution I must say I'm hesitating in my reply...

You say your mum has mental capacity and can reason, and this is nudging me in the direction of saying that going home might be the right thing on this occasion. If she can understand that she needs carers and will remember agreeing to the arrangements that are put in place then I, personally, would find it very difficult to leave her in care. My own mum is in a care home but has no insight into her problems and wouldn't accept carers or any help really although she was living in squalor, in a freezing cold house, unwashed, unable to make as much as a cup of tea, and hallucinating people all over the house and completely confusing the tv with real life. She wouldn't have agreed to a care home so I made the decision for her. But your situation feels different.

If you're concerned about money running out to fund care at home then do consider the various options available as far as releasing money from the property.

Having said all that, if you are going to explore taking mum back home I would say be very clear as to what you are able to do to support this arrangement. If your mum really is happy to accept the needed level of carer support that's one thing, but if she expects you to surrender your life to run around keeping everything afloat, or if you think this is likely to be the end result anyway, then you have every right to say no. I really feel that often keeping people in their own homes comes at a very heavy price to their nearest and dearest, not financially but in terms of time and emotional input.

 

[loveahug]

I hesitate to ask BUT are you 100% convinced that, as your mother just wants control over her life, if she gets back home she won't refuse the carers and other sorts of help? My mum is at home and I know if, for one moment, she thought she could say no to the carers she would, like a shot, and they come in four times a day. She'd be in hospital within the week. I told her that they have to come in to supervise her 'dangerous' medication.

TBH I think you'd be very brave to take that risk....

Much love, it's that rock and hard place choice again.

 

[BR_ANA]

I just need to type to get these worries off my chest.

My mother was diagnosed with memory problems, about a year ago. She was prescribed Rivistigmine. She is 90, and in good physical health for her age.
But she'd had a couple a falls, and I don't live close, and she said she was lonely.
Carers came in but she told them to go away as she was fine.
She forgot to take her medication, and the food in the fridge was often off when I visited.
She sometimes got very depressed, alone in her large house. And of course I was worried sick that she'd fallen on the stairs. She had an alarm but didn't remember what it was for.

So, fearing a crisis, I moved her into residential care.
At the time she thought that was a good idea.

Distress and trauma followed: she wanted to go home. Phoned all the time. Awful.
Then she seemed to settle for a few weeks.

My sister and I are now getting organised to rent out her house to help pay the fees.

But now, this morning, my mother phoned me and insisted she wants me to take her home "as soon as possible". As far as I can work out, nothing specific has triggered this. It's just her, sitting in her chair. She was very rational. She wants to go home. She wants carers re-installed. Neighbours can do her shopping. It will all be how it used to be. "Why am I here in this expensive place, with people doing the cooking for me? I can do my own cooking!" She wants to be in her own house. "Is that too much to ask?" she says.
She said she "feels like a nothing" in the care home.
This is true: her house, where she lived with my late father, gave her a real identity. Even though she didn't do the garden, she felt as though she was "keeping it going".
In the care home, there is no equivalent.

Does anyone know a care home/residential care where they succeed in giving residents a purpose? My mother needs work to do, a role to fulfil. Any ideas how I can make that happen? She doesn't want to participate in the running of the home (sorting the laundry, for example, which is what I'd do if I were there), because she feels as though she's paying them to do that sort of thing!

It is probably true that with a superhuman effort, we could move her back home. I'd need to stop the actions in progress to rent the house. I'd need to find carers, re-engage the neighbours. Depending on how long she lives, we could afford carers. Social Services will not engage because she owns her own house and has savings, and because she is sort of OK, not in anything like the crises that are described by others on here. Her money will run out in about 2-5 years if we do this.

Am I simply being lazy, leaving her in the care home? I truly think it's the best solution for her. She's not going to get any younger. But she does have mental capacity. She's losing her short-term memory, but she can still reason.
And she's still my mother. When she tells me I have got to take her home `as soon as possible', it's really difficult to be objective about it.

Sorry to rant on. I know others have much worse, and life-threatening situations. It just helps to type. Thanks for reading.

For what you said she was refusing careers, not checking her food, not doing gardening or shopping or taking medicines. These are good reasons for changing her life. I dont think you are lazy.

At this stage my mom write a diary, painted, knitted as a job( she lived with me and a career used to take her to art classes. )

Your mother refused careers when she was at home, what will change now ? I think she, at her home or CH , probably wont cook cause carer will be paid to do it.

Why does it have to be her house, why cant it be a small house near on daughter home, or another CH near daughter home? So she can have more visits.

 

[sistermillicent]

Speak to the neighbours, see if they are comfortable having her move back home and whether they are happy to take responsibility for the shopping. It may be that they can fill you in on how things were when your mum lived there, though I know you are aware of how difficult things became already.

My mum suddenly decided she needed a job and that it would be the answer to her feelings of uselessness which descended on her, though she was at that stage unable to cook a sensible meal. No amount of telling mum she was still mum to us and still worth everything to us made any difference. Unfortunately the feeling of being useless or having no purpose are not going to go away when faced with something to do. We tried getting my mum to give art lessons to someone who was actually from social services. (mum was an artist and designer all her life) It didn't work.
It's an agonising time for you all.

 

[Jany]

Wow - thank you all - it's helpful to know others are in this dilemma. Or have been through it.

 

[starryuk]

But now, this morning, my mother phoned me and insisted she wants me to take her home "as soon as possible". As far as I can work out, nothing specific has triggered this. It's just her, sitting in her chair. She was very rational. She wants to go home. She wants carers re-installed. Neighbours can do her shopping. It will all be how it used to be. "Why am I here in this expensive place, with people doing the cooking for me? I can do my own cooking!" She wants to be in her own house. "Is that too much to ask?" she says.
She said she "feels like a nothing" in the care home.
This is true: her house, where she lived with my late father, gave her a real identity. Even though she didn't do the garden, she felt as though she was "keeping it going".

.
We had a similar dilemma when my Mum went into a CH. She still had a little mental capacity and fought tooth and nail to stay where she was.

"So what if I go out and get lost. Someone will find me and bring me home." "If I get hit by a bus, well, let nature take its course." " I don't want to cook, so what? I can eat sandwiches." etc etc etc. She sounded rational in a way, just not realistic.

But Mum had to move. Her retirement village could no longer keep her safe. She kept calling out the care alarm people for nothing and she was 'evicted'. A residential home was the only option for us.

My feeling would be for your Mum to stay where she is. As others have said, you had reasons for placing her in a CH before. Could you 'go along' with your Mum's idea, but 'postpone' the move? Say the house needs re-decorating, new bathroom or something in the hope that the phase will pass?

Meanwhile, an important job for your mum...to make her feel useful... Could she be given a clipboard and something to check up on /supervise every day? In mum's CH there is a lady who is given the task of writing letters every day or sorting out the week's menus. (Not that they actually get posted of course). Just ideas...

 

[Jany]

.
My feeling would be for your Mum to stay where she is. As others have said, you had reasons for placing her in a CH before. Could you 'go along' with your Mum's idea, but 'postpone' the move? Say the house needs re-decorating, new bathroom or something in the hope that the phase will pass?
.

Thanks Starryuk. I did have reasons. Part of my dilemma now is that I thought she'd enjoy it in the care home. She's a social person. We've been on holidays for older people and she mixed really well, and enjoyed watching the other people. They were a bit puzzled when she kept asking the same question again and again. But it went well. I thought the care home would be like that: nice for her.
She maintains it isn't. She says she's bored. The other people are not good company. The activities are demeaning. The food is boring. It's all very unfamiliar and not what she's used to and she doesn't like it. So she'd like to go home, as soon as possible.
This is an expensive private care home. She can't fault the staff, who she describes as "very obliging". She can't fault her room, which has a little garden of its own. But she's totally refusing to put up any of the pictures or ornaments from her house, because that implies acceptance of the care home. This in turn means the room is unfamiliar and hotel-like. I am by stealth gradually putting up photos. But she takes them down. This isn't really dementia, this is a rational non-acceptance of the care home. Or it could be. Difficult to say.

Well, she's not enjoying it. She didn't enjoy it at her house either. At home, though she was ill, lonely and afraid, she felt there was some point to her life ("Keeping the house going").
Now she says there's none."My life has ended" she says. She's also not ill, not lonely, and not afraid. but she discounts that. "I can grapple" she tells me, "I can cope". Well, she maybe could, but only if I put a huge amount of work in to help her.

I just can't face the personal emotional cost of maintaining her at home. Delphie and others have put it well. Yes she's my mother, but, rightly or wrongly, there's a limit on what I am prepared to do for her. I did all I could, for two years. The result is that she remembers a golden age of doing the garden, supervising building work, arranging holidays, doing the shopping, cooking meals. In fact, before she transferred to the care home, she was doing none of these things herself. But I successfully involved her, and gave her a "full life". And neighbours called in. Now it's all gone. Perhaps I shouldn't have tried so hard.

So she's got questions on the purpose of her life. Well, haven't we all? I really am defeated at trying to solve that one for her. And as SisterMillicent described, we can try to give other people purpose, but we don't necessarily succeed. Thank you for your story SisterM.

As I say, apart from the memory loss and vagueness, she's more or less OK, except that she's elderly. 90 years old. So something's going to happen sooner or later, and I think the care home is the best place for it to happen in. Otherwise I'm sitting at my desk trying to work, waiting for the next crisis, ready at half a day's notice to fly down the motorway.

Oh dear. It's really difficult to take decisions on behalf of others. Especially if the "others" are your parents. Thank you to everyone for reading all this and for your very helpful comments. It really helps to know others are out there.

 

[Jany]

Although I firmly believe that residential care can be a very good solution I must say I'm hesitating in my reply...

You say your mum has mental capacity and can reason, and this is nudging me in the direction of saying that going home might be the right thing on this occasion. If she can understand that she needs carers and will remember agreeing to the arrangements that are put in place then I, personally, would find it very difficult to leave her in care. ...

I think that at the moment she will say anything to get out of the care home. She will "agree that she needs carers" but when we actually get home, she'll forget that agreement. She has memory loss. One thing I've learned is that it's logically impossible to make "agreements" with someone with memory loss. She just forgets. Even if it's written down, she'll write something else down.
She'll say that she'll have live-in care. But if she doesn't like the person, or she gets ill and needs nursing, the problem is back onto me again. She'll also deny that she agreed to live-in care, and demand to know why she's paying for a lodger to live with her. I can just see it!

Her house is treacherous: steep stairs and very old, irregular floors. It would need a whole load of building work to move a bathroom downstairs. Which I would have to organise. From 100 miles away. It just defeats me, even thinking about it.

 

[Moonflower]

It is horribly difficult. My mother really misses having a purpose - being needed. Yes, there are activities in the care home, yes, they would be happy for her to fold napkins etc - but she doesn't want to "be entertained" and why should she help to do things when staff are being paid to do it? The reality is, that she is nearly blind, very shaky on her feet, and has no short term memory. So finding things she is needed to do is very hard. But my mum wasn't happy on her own at home either, and I think that at a certain stage, for a while at least, the ability to be content may be lost. The only way my mother would be really happy would be if I were with her 24 hours a day, devoting my whole undivided attention to her, and nothing else.
I do notice that when I take her out, she copes less well outside the care home, whatever her grumbles. The rigid routine, knowing when her meals will be etc really helps. And she is clean, which wasn't the case when she lived alone.
I suspect that taking your mum back to live in her own home would be at a terrible cost to you. And given the progressive nature of dementia, might only be possible for a short time before you had to face this again.
Is there any other possible solution? Could you take her out for the day once a week or once a fortnight and let her help you do something in your own home? Could she maintain her little garden in the spring - you could visit garden centres, choose plants etc - start with some catalogues now...
To be honest in your shoes I'd say that you'd love to take her home but the doctor says no.

 

[starryuk]

Jany, the more you talk about it, the more it really sounds as if your mum should not go back to her home. And the more it sounds as if you have thought long and hard and know it.
Moonflower is absolutely right, don't you think?

I suspect that taking your mum back to live in her own home would be at a terrible cost to you. And given the progressive nature of dementia, might only be possible for a short time before you had to face this again. .

So,so difficult to say 'No' to your mother though. I really feel for you.

 

[Jany]

It is horribly difficult. My mother really misses having a purpose - being needed. Yes, there are activities in the care home, yes, they would be happy for her to fold napkins etc - but she doesn't want to "be entertained" and why should she help to do things when staff are being paid to do it? The reality is, that she is nearly blind, very shaky on her feet, and has no short term memory. So finding things she is needed to do is very hard. But my mum wasn't happy on her own at home either, and I think that at a certain stage, for a while at least, the ability to be content may be lost. The only way my mother would be really happy would be if I were with her 24 hours a day, devoting my whole undivided attention to her, and nothing else.
I do notice that when I take her out, she copes less well outside the care home, whatever her grumbles. The rigid routine, knowing when her meals will be etc really helps. And she is clean, which wasn't the case when she lived alone.
I suspect that taking your mum back to live in her own home would be at a terrible cost to you. And given the progressive nature of dementia, might only be possible for a short time before you had to face this again.
Is there any other possible solution? Could you take her out for the day once a week or once a fortnight and let her help you do something in your own home? Could she maintain her little garden in the spring - you could visit garden centres, choose plants etc - start with some catalogues now...
To be honest in your shoes I'd say that you'd love to take her home but the doctor says no.

Moonflower thank you. You voice my thoughts. Good idea. I can and do try the "garden centre" approach. We went last week. Although of course she's not interested in buying anything because she's "not going to be at the hotel(care home) much longer". I will continue.
It's a good idea to see if there's something she can help me with here in my flat. And I can try hard to think of a task I can take to the care home. Embroidery perhaps.

I really start to wonder if we shouldn't resurrect monasteries - or something like that, for our older lives. Simple, repeated services, dignified buildings, familiar words to chant that have some deep meaning, a little gardening, regular simple meals, a bit of sewing, or copying texts, picking herbs for the Benedictine, a sense of being part of a whole, having a simple job to do. I am not at all religious, but lately I've come to see how religious communities might have a lot to offer the impaired and the elderly, the core-worn and world-weary, as well as the inspired and devout believers.

 

[Jany]

Jany, the more you talk about it, the more it really sounds as if your mum should not go back to her home. And the more it sounds as if you have thought long and hard and know it.
Moonflower is absolutely right, don't you think?


So,so difficult to say 'No' to your mother though. I really feel for you.

Yes Starryuk, that's exactly it. SO difficult to say "no" when (a) it's your mother and (b) if I really tried hard and as Moonflower says, put 24 hours into it, the answer could be "yes".
Moonflowers' idea of invoking the doctor is good. I hadn't thought of that.

Mother: "So are you saying it's not possible for me to go home?"
Me: "It's not possible" (Thinks: Well, if I tried very hard it might be possible)
Mother: "Because?"
Me: "Because you are old. You are nearly 90.The best place for elderly people is in a community. Like where you are. You need people round you at your time of life." (Facts are good. She can't deny she is old)
Mother: "But there's nothing the matter with me. Is there?" (There is)
Me: "You are a bit forgetful…"
Mother: "I've always been like that! I make lists. I can manage. I managed before."
Me: "No you didn't. I was doing the managing."
Mother: "Well, you can't carry on doing that. I'll manage on my own. I'm perfectly capable. I'm better than all the other people here."
….
….

 

[Moonflower]

I think you might be my sister Jany! My mother is better than all the other people there too - and to be honest I can see why she would want to be - she looks at old ladies in wheelchairs, old ladies with dementia, and doesn't want that to be how people see her.

Ok, so she has to stay there until the doctor says she is well enough/her house has been made safe/carers have been arranged and approved by the doctor. You could start by saying you will make enquiries about what would have to be in place in order for her to return home, wait several weeks, say you will chase it up (SS are so very slow) etc etc
In the meantime, she might as well start to tend the garden. After all, when she leaves there the next person would appreciate her efforts, so it would be a kind thing to do...

I do feel for you, I know how hard it is

 

[pippop1]

You: The Dr seems very keen for you to stay for the time being. We can't go against the Dr's advice or else if you need him I'm not sure if he will be willing to help. I know it's difficult for you. Now, what's for lunch?

 

[marionq]

Moonflower thank you. You voice my thoughts. Good idea. I can and do try the "garden centre" approach. We went last week. Although of course she's not interested in buying anything because she's "not going to be at the hotel(care home) much longer". I will continue.
It's a good idea to see if there's something she can help me with here in my flat. And I can try hard to think of a task I can take to the care home. Embroidery perhaps.

I really start to wonder if we shouldn't resurrect monasteries - or something like that, for our older lives. Simple, repeated services, dignified buildings, familiar words to chant that have some deep meaning, a little gardening, regular simple meals, a bit of sewing, or copying texts, picking herbs for the Benedictine, a sense of being part of a whole, having a simple job to do. I am not at all religious, but lately I've come to see how religious communities might have a lot to offer the impaired and the elderly, the core-worn and world-weary, as well as the inspired and devout believers.

Jany, my husband's link worker told me about a study of the brains of a group of nuns from a closed order - it was shown that a number of them had dementia evidence yet had functioned well with no need for treatment. It was concluded that the regular tasks and life of the convent together with company and good regular food had kept the worst aspects of dementia at bay. So, you are on to something with your idea.

 

[Witzend]

I think that at the moment she will say anything to get out of the care home. She will "agree that she needs carers" but when we actually get home, she'll forget that agreement. She has memory loss. One thing I've learned is that it's logically impossible to make "agreements" with someone with memory loss. She just forgets. Even if it's written down, she'll write something else down.
She'll say that she'll have live-in care. But if she doesn't like the person, or she gets ill and needs nursing, the problem is back onto me again. She'll also deny that she agreed to live-in care, and demand to know why she's paying for a lodger to live with her. I can just see it!

Her house is treacherous: steep stairs and very old, irregular floors. It would need a whole load of building work to move a bathroom downstairs. Which I would have to organise. From 100 miles away. It just defeats me, even thinking about it.

To be honest, it sounds as if your mother now needs the kind of care and supervision that's best provided in a care home. When someone's short-term memory is very bad, it can create all sorts of problems, not least with arranging carers. If someone is going to forget that they are coming, or that they've agreed to have them, they may (quite rationally in those circumstances) refuse to let them in. (My mother could never remember that someone was coming to make sure she took her Aricept, or even that she was on any meds, so not surprisingly she often refused to let the woman in.). She is not going to get better and if you moved her back home you might find a sudden downturn would mean you have to start all over again, in a hurry.

Also, and this is my opinion only, I don't think it fair to rely on the help of neighbours when someone has dementia. I know people are often very kind, but they may begin to resent being 'put upon', and to feel partly responsible. We had all sorts of neighbour-related problems with a relative who stubbornly refused paid carers but kept asking neighbours - and she didn't even have dementia.

It is so common for people to ask (or demand) to go home from a care home, but in every case I've ever heard of, the decision was not taken at all lightly - it was because the necessary care couldn't realistically be provided any other way. Reading between the lines, I think you know you have done the right thing by your mother. If it were me, I think I'd try the 'postponing' little white lies - 'yes, but we need to do X and Y to the house first,' - could you try saying 'the doctor says' she needs such and such done first?
Some people will accept 'the doctor says', particularly the very elderly for whom the doctor so often = God.

 

[Jany]

To be honest, it sounds as if your mother now needs the kind of care and supervision that's best provided in a care home. ...
It is so common for people to ask (or demand) to go home from a care home, but in every case I've ever heard of, the decision was not taken at all lightly - it was because the necessary care couldn't realistically be provided any other way. Reading between the lines, I think you know you have done the right thing by your mother. .

Thank you Witzend for your thoughts.
All that you've said is helpful. I do think she needs the care and supervision, and companionship, that's provided by a care home. The neighbours can't take responsibility, as you say. And it's the responsibility that's the burden.

As you say I know I've done the right thing by her. But it has been my decision, not hers, even though I tried to involve her each step of the way.
The transition that's occurred is that I have deemed my mother as no longer able to take responsibility for herself.
She disagrees. She, of course, still feels like a fully functioning adult. I think that's what's behind the demand to go home. She wants to have control, take responsibility, which is what she's always done. But she can't remember who's just been on the phone, or what day of the week it is. She also is not aware that she can't remember, and is left with a feeling that she should be in control of her own life. And in the care home, she feels she isn't. Which must be awful. I understand it. But my feeling of responsibility says that I can't leave my mother in an unsafe, isolated house, with only paid carers visiting occasionally.

It's really a very difficult problem, both practical and moral.
She's an adult, and yet I am saying she can't take responsibility for herself. I'm saying that. It's not a doctor, or a professional of any sort who's saying that. They would say she had capacity, especially if they were with her only briefly. In a way you could say I've taken control of her life. In my worst moments I put it like that and feel terrible.

In my better moments I say I'm doing my duty as a loving daughter. I've devoted a lot of thought, a lot of effort and a lot of time to giving my mother the bast possible life she can have. And I'm planning for an uncertain and worsening future, which is only responsible.
She might think otherwise, and so might others, but many people are with me, and I thank you Witzend, and others who posted here, for your interesting ideas, thoughtful arguments, discussion and encouragement. All much appreciated.