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

[CINDYJANE]

Gosh, I 100% feel like you do, with my mum in a care home! When I visited her at the weekend she was demanding to go home, and I felt like you, but today when I visited after lunch she was happy and settled- a completely different mum! We played Scrabble and Snakes & Ladders, then SHE suggested we watch TV together. We met and talked with the activities lady , and she reassured me (and mum) that she was enjoying the keep fit and other things arranged. Mum looked happy! I felt happy!
Like you and others, I don't feel that care homes are giving residents enough purpose. Did you watch the TV programme a few years ago when several elderly celebrities were filmed ?It transpired that making them do things(like making their own tea) was very important and being waited on hand- and -foot was NOT a good thing. But my mum thinks she is staying in a hotel too.
Remember you have a life too. When I was a child, we moved several times, because of my father's job. I never wanted to move house, and I lost old friends, had to adjust to new schools etc. But my feelings on the matter of moving were not considered. My parents wanted to move and that was that. So why do we have to beat ourselves up with guilt that insisting that our parent stays in a care home- where you know she is safe and properly looked after- is not making the best of a bad situation. This is the best for her. She is 90 and old! Nothing can change that fact. Would we feel less guilty if we allowed our mums to go home, and saw them struggle or worse had a fall and were left alone injured for hours? No I don't think so.

 

[Jany]

Gosh, I 100% feel like you do, with my mum in a care home! When I visited her at the weekend she was demanding to go home, and I felt like you, but today when I visited after lunch she was happy and settled- a completely different mum! ….
Like you and others, I don't feel that care homes are giving residents enough purpose. Did you watch the TV programme a few years ago when several elderly celebrities were filmed ?It transpired that making them do things(like making their own tea) was very important and being waited on hand- and -foot was NOT a good thing. But my mum thinks she is staying in a hotel too.

CindyJane - how right you are! I think being waited on hand and foot is part of my mother's problem. She wants to do things. This means making her own tea, for example, exactly as you say. She doesn't want to be "entertained" all the time. This is not a meaningful activity for her.

Remember you have a life too. ... Would we feel less guilty if we allowed our mums to go home, and saw them struggle or worse had a fall and were left alone injured for hours? No I don't think so.

That's exactly the issue I face, and the issue I faced before I moved her. I didn't want to wait for a crisis. That seemed irresponsible to me.
So thank you. I shall try very hard not to feel guilty.

I do however think I might consider other care homes: now that I know more clearly what I am looking for. I have seen (on the web) one where they seem to do purposeful things, like an ongoing project to create a mosaic collaboratively, and there is a residents' kitchen, which would make a huge difference to my mother. She'd like to make me a cup of tea when I visit. However just at the moment the idea of moving her is daunting, and may be unwise. This other one is also further away. So she's staying where she is for a while yet. And I'll try all the suggestions that people have made on here. However it does occur to me that (a few months down the line) offering her a move might be beneficial, if she's still not settling.

 

[CINDYJANE]

Jany, I think looking for a different home certainly sounds like a good idea, if you can find one more purposeful than hotel-like! My mum is trialling her "hotel" at the moment , but lovely though it is I wish there was more for her to do. I think maybe I ought to go and have another look at other homes now I am more aware of what to look for. But even then, what might be best for her right now might not be so suitable in a years time , as her dementia progresses.
Do let us know how you get on Jany!

 

[FifiMo]

Hiya,

Your experience is not uncommon. When someone who has been struggling at home goes into a care home and all the things that were being neglected at home are then restored, by someone else, there comes a point where the improved situation leads the person to feel they can go back home again and everything will be fine. The reality is that it is the care home that brings about the improvements and that, sadly, there is no improvement in their capability to cope at home. Apart from anything else, the person does quickly become institutionalised and benefits from the structure and routine of the home, although they would never recognise this themselves.

You talk about needing a purpose. Being honest with yourself, is this something YOU think she needs, rather than it actually being needed by your mum? What is your mum capable of doing on her own? What things can she actually remember to do on her own? Does she prompt herself to find something to do or is she reactive to what is offered by you or someone else? Then there is the realism of the fact she is 90 years old. What physically and mentally can she do? I know it is a lot of questions BT sometimes we create expectations which are ours and not say, your mum's. We feel guilt and sorrow because our mother's illness needs the support of a nursing home. We imagine everyone sitting v staring into space day in and day out. We consider the home should keep everyone active. All of these come about because we want to assuage our guilt and sorrow and are not necessarily reflective of our mother's wants and needs. It might seem difficult for us to understand but the are home routines are actually pretty full time activities in their own right. From waking, then showering, getting dressed, along for breakfast, little nap, time for coffee, lunch time, afternoon cuppa, little nap, dinner, getting ready for bed all interspersed with visits and other relatives coming and going then ....day is over. I would like to bet that before the home your mum was not in that kind of routine and for someone of 90 to adjust to this would be hard enough without extras added on.

In one of your posts, you t the nail on the head where you said you thought your mum had lost the ability to be content. Unfortunately that in itself can be one of the progressions of dementia. Sometimes there is no foundation for the complaints. It is, if you like, the dementia talking. No amount of activities or changing homes is going to change that. Sometimes we just have to tell ourselves that everything that can be done is being done. From what you say, there are a selection of activities on offer in the home which your mum could get involved in if she chose to. So, it is not that opportunities don't exist. It is the illness that has taken over unfortunately. For this reason you have to give yourself a break. You have done your best. Your mum is safe, secure, well fed, laundered, you name it. In the time you spend worrying all that your mum really wants and needs is not a purpose, it is to spend time with you. That is all. Everything else, thanks to you, is taken care of.

If your mum insists on going home, maybe it is time to tell her it is boarded up, no electricity, no water and will take weeks to sort out. Then when mentioned again tell her you are working on it. That way she can keep her 'hope' and you can prolong the time it is taking to get things sorted.

Fiona

 

[starryuk]

You talk about needing a purpose. Being honest with yourself, is this something YOU think she needs, rather than it actually being needed by your mum? What is your mum capable of doing on her own? What things can she actually remember to do on her own? Does she prompt herself to find something to do or is she reactive to what is offered by you or someone else? Then there is the realism of the fact she is 90 years old. What physically and mentally can she do? I know it is a lot of questions BT sometimes we create expectations which are ours and not say, your mum's. We feel guilt and sorrow because our mother's illness needs the support of a nursing home. We imagine everyone sitting v staring into space day in and day out. We consider the home should keep everyone active. All of these come about because we want to assuage our guilt and sorrow and are not necessarily reflective of our mother's wants and needs. It might seem difficult for us to understand but the are home routines are actually pretty full time activities in their own right. From waking, then showering, getting dressed, along for breakfast, little nap, time for coffee, lunch time, afternoon cuppa, little nap, dinner, getting ready for bed all interspersed with visits and other relatives coming and going then ....day is over. I would like to bet that before the home your mum was not in that kind of routine and for someone of 90 to adjust to this would be hard enough without extras added on.

Fiona, of all your insightful, reassuring, knowledgeable posts which I have read here on TP, this is outstanding for me. I am going to read, read and re-read it every day to keep those irrational guilt feelings at bay. Thank you. xx

 

[Jany]

Jany, I think looking for a different home certainly sounds like a good idea, if you can find one more purposeful than hotel-like! My mum is trialling her "hotel" at the moment , but lovely though it is I wish there was more for her to do. I think maybe I ought to go and have another look at other homes now I am more aware of what to look for. But even then, what might be best for her right now might not be so suitable in a years time , as her dementia progresses.
Do let us know how you get on Jany!

Thanks Cindyjane - I wish we could go and look together! You are based in Dorset/Somerset right? I am in Central London, looking for care homes in London, and Cambridge.
My mother is currently in a care home in South East London (Kent).
I shall take Fiona's advice - and stop worrying for the time being. I shall have another survey of care homes in a few weeks, depending on how mother does.

 

[Jany]

For this reason you have to give yourself a break. You have done your best. Your mum is safe, secure, well fed, laundered, you name it. In the time you spend worrying all that your mum really wants and needs is not a purpose, it is to spend time with you. That is all. Everything else, thanks to you, is taken care of.
Fiona

Fiona - thank you so much for your post. As StarryUK says, I shall re-read it a lot. Very wise and thoughtful comments, greatly appreciated.

 

[Noorza]

Many of us on here have had to learn how to tell little white lies.

If she asks if it's permanent, say "no, it's just a break where you can get spoiled for a while" or have the builders in to repair her stairs, or a wet room, so it's not fit to be lived in for a while.

I know it's not true but her memory is bad, it might just take some of the anxiety of being in the home away for a while having the thought that it's not forever, even though you know it will be?

 

[Jany]

Many of us on here have had to learn how to tell little white lies.

If she asks if it's permanent, say "no, it's just a break where you can get spoiled for a while" or have the builders in to repair her stairs, or a wet room, so it's not fit to be lived in for a while.

I know it's not true but her memory is bad, it might just take some of the anxiety of being in the home away for a while having the thought that it's not forever, even though you know it will be?

Noorza - I find this really difficult. Her memory is bad but not (yet) extinct. Also my mother writes things down. She can reason perfectly OK. So if I say it's temporary, she'll ask, so when exactly am I going home? And then she'll want a date to put in her calendar.
If I say the house roof needs fixing (which it does, after these storms) she'll say "I should be there supervising it!" and it will really worry her that the house is being fixed or has a fault, and she's not there to supervise it.

The lie I'm telling is "you cannot cope on your own".
She could cope "on her own" IF I organised a rota of carers, neighbours, and myself to do things for her such as shopping and cooking (and gardening, and house repairs and outings etc etc), and IF I was prepared to live with the constant worry of whether or not she's fallen down the stairs.

So in a way I've arranged a move to a care home because I've reached the end of what I'm prepared to do, not because she has reached the end of what she's capable of (if that makes sense).
I know that many people, and many on here, are doing a LOT more for their relatives than I am doing. They are wonderful people and I honour them.
My mother is in the fortunate position to have the means to live in a nice care home, where she's well looked after and has company. It solves some of the problems she said she had before she moved (I'm lonely, I'm frightened, I feel sick). She has conveniently forgotten all those problems now.It also solves potential future problems before they happen: such as falls and other incidents associated with being over 90.

It also (to be brutal) solves my practical problem of having to hack up the motorway to find out if she is alright when she doesn't answer the phone, or when she needs to be taken to the doctor etc. She's nearer me now and I can visit more often and in a proper planned way. But this is all my convenience. Hence my feeling of guilt.
People like the wise Fiona on here help me to deal with the guilt.

It's still a conundrum. My mother just now (5 mins ago) was on the phone to tell me she wants to "go back home and manage". She says she feels "dumped". She was not dumped. She actively participated in the decision over a period of about a year and the place where she is is not a dump. And I visit at least weekly, which is more than I did when she was in her house.

Ahhhhh! This is turning into a rant. Sorry. Thanks for your thoughts. It's so good to have this place to share our troubles!

 

[Noorza]

The lie I'm telling is "you cannot cope on your own".
She could cope "on her own" IF I organised a rota of carers, neighbours, and myself to do things for her such as shopping and cooking (and gardening, and house repairs and outings etc etc), and IF I was prepared to live with the constant worry of whether or not she's fallen down the stairs.

That is not a lie, she can't cope on her own. The guilt monster has no where to live in your conscience, but most if not all of us have had that nasty creature visit us and try to worm their way in. You have told the truth, she cannot cope on her own. She wasn't happy on her own, she was frightened on her own.

I can relate totally to how you feel when I got mum's wet room fitted the workmen called me the "foreman" but she desperately wanted to be in charge. So there was a lot of running around taking pictures of tiles, toilets etc. that were in stock at local suppliers, so she could decide and make the decisions, and lots of debates about how when they were ripping the floor up she really had to be out of the house as the dust would be really bad for her heart.


That was true, heart failure and digging down to the foundations of your home is not a good mix when the dust flies.


I don't know if you have an equivalent, but when Mum wouldn't listen to me, the companies manager, had a really good way with him, and she would co-operate with him when it was a nightmare for me.

Is there anyone who could "sell" the care home to her? Just trying to think of solutions but with this disease there is no one size fits all.

I am delighted though that you are finding this site useful. I found it, and still find it, a Godsend.
.

 

[MeganCat]

When I was trying to arrange carers to go in to my mum it took 4 months before they had vacancies, and she was able to get the care - perhaps you could use that as a delaying tactic that she couldn't argue against

 

[Jany]

When I was trying to arrange carers to go in to my mum it took 4 months before they had vacancies, and she was able to get the care - perhaps you could use that as a delaying tactic that she couldn't argue against

Good thought MeganCat. And of course there will be a big delay to get organised for the meals-on-wheels and to make sure the heating works, and notify the milkman…..could take months…and months….
My mother has written a list of all the things "she" has to do before she can go home. Start the milk. Arrange Meal-On-Wheels. Of course she cannot do them. She does not know who to phone. And sometimes doesn't know how to use the phone. I set it all up for her before. But she thinks she did it.
I think I can use the delay as a delay: "This is going all to take a really really long time to set up. Let's make sure we really want to do this before we start all that organisation all over again. Let's consider it. In the meantime, how about we go to the garden centre?"

Thanks very much for your thought MeganCat. I hope your mother is well set up with carers now.

 

[velveteen]

I have been feeling pretty low just recently as my Mum has been at a similar 'place' to yours. My Mum was diagnosed 2 years ago and so as a family we decided to move Mum closer to me ( my sister lives abroad) 2 weeks after she moved she had a massive stroke and was in hospital for 3 1/2 months. She left hospital needing 24 hour care and so went into a care home.She has now recovered beyond all expectations from her stroke but her Alzheimers is obviously not good. My Mum is only 77 and was very very fit before her stroke. She is now going through a phase of saying she wants to go home to her old house, which has been sold. I constantly question what I am doing. Could she live with us if we moved ? When I take her out or bring her home for tea she cries and gets very depressed. I know that it would not be possible as I would need to give up work and I also know that she still would not be happy because she still would be incapable of doing things that she is convinced she can do. All the details of your story are so familiar. Mum also felt that she was 'keeping the garden under control' even though she had a gardener every few weeks. She also bought 3 lawnmowers ! and numerous other pieces of gardening equipment that she never used!
Anyway I waffle on !! I think what I am trying to say is - your Mum ( and mine ) are, I'm sure in the right place but it is not easy.We try to use distraction/diversion techniques and humour with Mum. Sometimes it works sometimes not. I read a book called Contented Dementia which was a Godsend for me and would highly recommend it. I spoke to Mum's home today and was told that she is very happy and does not cry or get depressed there, she seems to save it for me ! The home is the most wonderful place.
I'm sure that I will have a lot of ups and downs through this whole process but just being on this website today has picked me up.
My thoughts and hugs go out to everyone.

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.

 

[Owly]

The main things I noticed on this thread were -

1. the house is treacherous! The possibility of her lying on the floor, possibly concussed, possibly with a broken hip, is just awful. My mother had 2 operations for broken hips which led to worse dementia after the anaesthetic each time.

2. she was lonely before going into the care home: How much time would she spend entirely alone, if she went home? I think that would be the biggest shock, after being in residential care.

It seems that she's well off where she is. But maybe not feeling much self-importance, just 'one amongst many', not enough to do to prove her worth to herself and other people. Some people get this self-worth by what they do, especially if others can observe it or benefit from it. Turning this attitude around is rather difficult.

Can she still write? Could she be given a large, attractive book in which to write the Story of her Life? Dramatise herself and all the things that she did?

Failing that or other forms of distraction, I think moving her to a care home with more purposeful activities could be an excellent solution.

But taking her home should be knocked on the head as an idea IMO.

 

[Grandma Joan]

Apologies if this has been said before but some homes adopt a "butterfly approach" which I think means that they try to get all their residents involved in day to day living like make their own beds, help with the cooking , washing up etc etc. I have never experienced it but it might be worth investigating for your Mum. My Mum is 90 - aren't they amazing!

 

[KazzyF]

Just where I am at the Mo

Amazing to read all of these posts. My Mum is also demanding to go home where she is positive she can look after herself.
The reality is that she cannot assess danger, use the kettle, cook or even turn on the taps. When in an assessment home she almost walked into the road twice and had to be prevented by a carer.
I find it strange that they still know how to press our buttons. Part of us is still programmed to do as we are told, but we need to remember that they may sound rational, but actually haven't got a clue about the danger they would be putting themselves in.
I hope you find the right path for both of you.

 

[KazzyF]

Velveteen

I know exactly how you feel - my Mum was up to three hoovers, 35-40 pairs of trousers...then there was the fabric Softener......... but no actual food in the house.
My Mum cries all the time. I think it is the frustration of knowing they are ill sometimes.
Keep soldiering on.

 

[Dagne]

So much good advice here, my relative is in a home which uses the 'butterfly approach' - in fact, we picked it for that reason. She is still skeptical:

Cousin: I wish I could do some gardening (she hasn't had a garden for 30 years)

OH: Have you been to the indoor garden here? You might enjoy that.

Cousin: It's full of squabbling women (!)

Me: You could do some gardening outdoors as soon as it warms up a bit.

Cousin: Oh, I hope I won't be here that long!

I do feel people need meaningful occupation, it's a human need to feel useful. The suggestions here about a memory book are great. If she had any hobbies that she was still trying to do at home that might be good, but for some people it is the repetitive domestic chores such as washing dishes, laying the table, polishing shoes, doing the mending that can mean so much.

Is there a mending basket or similar you could bring her from home?