To stay in Care Home or go home?

[Redlib]

my mum has been in a lovely care home for three weeks for a period of respite after a hospital stay. She has been slowly declining with frontotemporal dementia and had a big decline before Xmas due to UTI and chronic constipation. We have the option of turning the respite into permanent residency and are now trying to decide what to do. Both my sister and I would like Mum to stay in the CH because 1) the CH is by far the best one we’ve seen and it is unlikely a free place will ever come up again and Mum is apparently quite settled (except when we visit and it is awful) 2) life was becoming endlessly miserable trying to care for Mum and the relief of having her looked after has been immense 3) we’ve done the hard bit and got her settled in a CH and would only have to do it again at some point.

Mum however is desperate to go home and is very agitated and miserable when we visit and believes she is going home soon. If we consulted Mum she would be on a bus home ASAP. Currently we have no in-home care package as Mum refused all carers, she was eating at my house everyday as she was no longer able to shop/cook, her personal hygiene had got very poor and although she hadn’t wandered at night she was very unkeen to stay in her house alone.

How can we assess objectively whether she would cope at home? Is it reasonable to make her stay in the CH even though it is against her wishes? When is the right time for a CH? What to do?

 

[Orlaworld]

It sounds as though your mum was struggling to cope prior to her admission to a care home (and not just because of the uti). If she was eating at your house and having difficulty maintaining personal hygiene etc, then things had obviously become really difficult for her. It is unlikely that were she to go home, things would be much better, even with a package of care (plus there is always that worry for you during all the times when she is alone). Your mum wants to be at home, but is connecting it with a time when she could cope independently. It doesn't sound as though she is aware of how tough it had become for her.

Against that, you sound like you have found a really good home, with the option to stay put. Which sounds like a great outcome. If she were to go home (and then decline) you might have difficulty in finding such a nice place again (or end up on a waiting list).

I have worked in many rest home and nursing homes and I've seen a lot of people who were 'desperate to go home'. In many cases, they were actually quite content to be at the home - they would enjoy the food, happily take part in activities or socialise, chat with staff etc - but when their family arrived, you would see a different side to them and they would complain and demand to go home. It was as though seeing the family members reminded them of their previous homes and unfortunately, the poor families were on the receiving end of the complaints.

I know it doesn't solve your dilema, but it might be worth asking all the care home staff to give you updates and reports on how she manages throughout the day. Perhaps she is quite content at other times? Maybe there are small adjustments that could be incorporated to make her routine happier? If she remains at the care home, she may always demand to go home every time she sees you because seeing you triggers that memory. That will obviously always hurt but I don't think it means you made the wrong decision.

 

[Steve115]

Hi Redlib,
You certainly have my sympathy. As of yesterday I have found myself in the same boat as regards my wife. She spent December in hospital and has subsequently been in a very good NH. She is happy in the NH and has stated on a few occasions that she wanted to stay. However, the original plan was to get her home. SS have helped make changes there ready for her arrival.

However we have just completed a CHC review which highlighted the complexities of her care with me in the end having to decide what to do. On offer was 5 double carer visits a day followed by care from me 3 times a night. In addition she appears to be on a 'cycle' of infections which need nursing or hospital care OR to stay in the care home for the foreseeable future.

When this all kicked off 3 years ago I had promised that I would keep her at home 'no matter what'. While my heart said get her home my head said stay in the nursing home where professional help is always on hand. I went for the latter though I understand the decision can be changed at sometime in the future.

I have felt really guilty ever since. I cannot help feeling that I have let her down but know deep down that the NH is really the right place for her. She has gone downhill quite rapidly and of course things will only get worse making it even harder to care for her at home.

Given what you have described and the fact you have a good home for your mum I would be inclined to stay with that. As we know things do not get easier with this illness so take advantage of the situation for your own health as well as your mum.

Good wishes
Steve

 

[love.dad.but..]

This is such a common thing...dad wanted to leave the nursing home but he was already searching in his mind for somewhere of comfort...his childhood home where he thought his mum still was...not once mentioned his actual home where he lived with mum for years. This is only a decision you can make but from what you say about your mum I don't think there is much of a decision to take...she wasn't coping...she was at your house every day...refused carers...self neglecting personal care shopping and eating. Stay with the care home...you seem happy with her care so far and it is difficult to find a place in a lovely home...don't risk it for an experiment of her going home for you just to be back to where you were pre hospital ...she has probably improved physically because of the care but her mental decline will continue. Ride out the rough early period with love lies.

 

[Bod]

my mum has been in a lovely care home for three weeks for a period of respite after a hospital stay. She has been slowly declining with frontotemporal dementia and had a big decline before Xmas due to UTI and chronic constipation. We have the option of turning the respite into permanent residency and are now trying to decide what to do. Both my sister and I would like Mum to stay in the CH because 1) the CH is by far the best one we’ve seen and it is unlikely a free place will ever come up again and Mum is apparently quite settled (except when we visit and it is awful) 2) life was becoming endlessly miserable trying to care for Mum and the relief of having her looked after has been immense 3) we’ve done the hard bit and got her settled in a CH and would only have to do it again at some point.

Mum however is desperate to go home and is very agitated and miserable when we visit and believes she is going home soon. If we consulted Mum she would be on a bus home ASAP. Currently we have no in-home care package as Mum refused all carers, she was eating at my house everyday as she was no longer able to shop/cook, her personal hygiene had got very poor and although she hadn’t wandered at night she was very unkeen to stay in her house alone.

How can we assess objectively whether she would cope at home? Is it reasonable to make her stay in the CH even though it is against her wishes? When is the right time for a CH? What to do?

The last half of the second paragraph, says it all.
She's far better off where she is. Not that she'll ever see it!
Eventually she will settle, you'll go through "I want/am going home NOW!" packing up ready to leave, faster than the staff can unpack! Sitting by the door, trying doors and windows.
One day she'll be sitting there, enjoying the entertainment, oblivious to you standing there watching.


Bod

 

[Amy in the US]

Redlib, this is so hard and I'm sorry.

I know it's difficult to be objective, but as best as you are able, can you think about the type of care your mum needs to be safe and content, or as content as possible?

Now think about what setting can best provide that care.

A quote I read on another website might apply here: care needs drive the decision making.

One of the hardest things about dementia, for me, is the way it forces us to make decisions for other people. So often the decisions are only for what they need, and not what they want, or would have wanted, or what we want. It's just not easy.

 

[father ted]

Mum didn't like being in her house on her own, she ate at your house everyday, her personal hygiene was poor, unable to shop or cook and refused carers. How can you assess objectively how she would cope at home? I think you know the answer.

 

[Marcelle123]

Mum lived near to us & we had her for meals three times a week, saw or spoke to her every day, did shopping and washing for her.

She was lonely and miserable - kept ringing up - had accidents - was alone and at risk every night - didn't wash properly - had stomach upsets because of poor food decisions - undid the bedding I washed and made up for her and slept on the mattress with no pillowcases. We found a lovely home & as she was nearly 96, tried to persuade her that now was the time - she refused to consider it, and wouldn't have carers or cleaners either.

Eventually a hospital stay (with cellulitis) meant a respite home, which didn't want to keep her because of her aggression. Luckily we found her a place at the home we'd already visited and had wanted for her. At first she didn't want to stay - but then, after some medications, her mood improved and she was content.

She lived for a year there and was much happier than she'd been for the last two or three years living at home. I knew this was true, and had it confirmed yesterday when I read through her diaries - the pointless routines, the loneliness, the growing confusion, the delusions about us...

Hard as it is, I think the best course is to leave your mother in the Care Home. You are so lucky to have found a good one. I shudder to think what would have happened if I'd let the hospital discharge Mum home again. She was hanging on by her fingernails and would soon have fallen off the cliff.

 

[LeagleAlien]

Hello there Redlib,

I have just been through a somewhat similar situation. My mother went into respite straight from hospital after a fall at home: that fall was the result of her complete inability to look after herself properly due to the acceleration of her dementia. She had done a good job of verbally convincing, or at least reassuring, many people, that she was coping well, but had reached the point where she couldn't even prepare a hot drink or food. Finding herself in a care home for respite, especially being placed with other dementia residents, was initially a challenge and she made many requests and even demands to return home - including the standard line that "it's generally agreed that people get better faster in their own environment," which showed a degree of comprehension of her situation. I was able to say, quite honestly, "doctor's orders are that we take this a day at a time, and that for the time being, you need to be in this environment to get better." After two weeks, I was able to move her to the care home we had had our eye on, and with it came a form of understanding - though it changes on a daily basis due to dementia - that this is now her permanent residence.

What I noticed over this 3-week period was that once she realized that she could have her meals prepared for her - and good meals at that - and have assistance getting showered and dressed if need be, that the hairdresser and chiropodist would come to her rather than the other way around, and that her friends would happily collect her for her regular social engagements, and that there were things to do and people to talk with during the day, then all arguments for staying "independent" were nullified. Although it might be just a little too much to admit it straight out, she evidently understands that is in a better place, physically and emotionally. She has stopped asking to go home. It was a difficult process to go through but faced with the alternative - that is, her actually going home! - it really wasn't that bad. We have done the right thing by her and deep down, she knows it.

If your own mother is in a great nursing home and clearly benefiting from it, I would strongly recommend just gently pushing through this difficult stage - "we're taking it a day at a time, mum" - and know that you're doing what's right for her. Somewhere, some point, she will hopefully acknowledge as much. I hope this helps.

 

[fizzie]

Redlib you could have a look to see if your authority has any extra care housing. It is sometimes a great option for people who cannot settle into the institutional, often noisy, life of a care home. It is independent living in a flat but with a care team onsite 24/7 and you can buy in more care as her needs increase. They usually have activities going on like fish and chip suppers and quizzes and also a lunch club. It's a good compromise for a lot of people. The personal hygiene situation can be sorted by the continence nurse (accessible through your your NHS trust or in some places through your Doctor's surgery. She will provide pads which eliminate the problem almost entirely. It's worth a look

 

[Witzend]

For what it's worth, and having been through this twice, I think it's time for a care home when
a) the person now needs more or less 24/7 care (by which I mean someone on hand ALL day, ALL night, 365 days a year) which can't reasonably provided any other way, or
b) for whatever reasons, family carers just can't cope any more.
Or both.
Nearly everybody will constantly insist that they want to go home during their first few weeks/months at a care home, and it's usually visiting family who will trigger complaints, when the person may well be reasonably settled the rest of the time.

If you've found a good care home, where you're sure she's being well looked after,mthen personally I would be thankful and stick with it.

FWIW, beyond a certain stage of dementia I don't think even extra care sheltered housing is a good idea. For a start, the move would in itself usually be extremely disorienting and confusing, and secondly, the person would of necessity be on their own at least part of the time, especially at night. In a care home there will always be a member of staff on duty, and from what you say about your mother's dislike of being on her own at night, I'm sure the CH option would be best. My mother would often wander about her CH at night, and whoever was on duty would make her a cup of tea, maybe a piece of toast, have a little chat and reassure her. Beyond a certain stage, this is IMO the kind of care that's needed.

 

[DeMartin]

Mum had a crisis, diagnosis severe vascular dementia. Recommended care x4 a day. Mum refused except for 2 non family people (who were not carers).
So do I set up carers, knowing each one will not make it through the door, hence phone calls,etc. I live Kent, her Devon.
So it was care home (she’s self funding so no SS input).
Mostly she’s happy, still wants to go shopping for bread and coffee, is doing her best to organise the rest of the residents.
Am I sad, yes I would love her to live in her house, but falls, not eating, hallucinations, and me waiting for the phone call, it just affects too many people.
Care home is safe.

 

[Redlib]

Thank you everyone for your thoughtful replies. I had a long chat today with an Admiral Nurse and she made some interesting points. She pointed out that as Mum has already been moved to hospital and then to respite, another move back home would most likely unsettle her again. The anxiety/agitation she suffered before she went into hospital will not have gone away, moving her home will not magically make everything better and the same problems/crisis we had before Xmas would still be there. Mum had refused to have carers at home and if she is now accepting care in the CH then this actually a step forward and she will be cleaner, better fed, more stimulated and less lonely. The nurse also said it is ok to look after yourself and put your needs first. I was at breaking point before she went into hospital and the thought of Mum returning home actually makes me feel ill. She said it was not selfish to look after your own health/needs and to accept you have done all you can but enough is enough. I feel terribly sad for my Mum but I believe the CH is the best place for her. I feel guilty that she will lose her independence, the ability to make some daily choices and, in many ways, her liberty, but she will be safe, cared for, stimulated and hopefully, at some point in the future, happier.

 

[chris1123]

I'd like to think if I had Alzheimers I'd check myself into a CH whilst still able to do so in order to spare my relatives.

 

[Marcelle123]

Thank you everyone for your thoughtful replies. I had a long chat today with an Admiral Nurse and she made some interesting points. She pointed out that as Mum has already been moved to hospital and then to respite, another move back home would most likely unsettle her again. The anxiety/agitation she suffered before she went into hospital will not have gone away, moving her home will not magically make everything better and the same problems/crisis we had before Xmas would still be there. Mum had refused to have carers at home and if she is now accepting care in the CH then this actually a step forward and she will be cleaner, better fed, more stimulated and less lonely. The nurse also said it is ok to look after yourself and put your needs first. I was at breaking point before she went into hospital and the thought of Mum returning home actually makes me feel ill. She said it was not selfish to look after your own health/needs and to accept you have done all you can but enough is enough. I feel terribly sad for my Mum but I believe the CH is the best place for her. I feel guilty that she will lose her independence, the ability to make some daily choices and, in many ways, her liberty, but she will be safe, cared for, stimulated and hopefully, at some point in the future, happier.

This sounds very sensible.
Very best wishes - it's not easy, but your Mum is in a good place, and you do deserve to have life and health for yourself. xx

 

[love.dad.but..]

Thank you everyone for your thoughtful replies. I had a long chat today with an Admiral Nurse and she made some interesting points. She pointed out that as Mum has already been moved to hospital and then to respite, another move back home would most likely unsettle her again. The anxiety/agitation she suffered before she went into hospital will not have gone away, moving her home will not magically make everything better and the same problems/crisis we had before Xmas would still be there. Mum had refused to have carers at home and if she is now accepting care in the CH then this actually a step forward and she will be cleaner, better fed, more stimulated and less lonely. The nurse also said it is ok to look after yourself and put your needs first. I was at breaking point before she went into hospital and the thought of Mum returning home actually makes me feel ill. She said it was not selfish to look after your own health/needs and to accept you have done all you can but enough is enough. I feel terribly sad for my Mum but I believe the CH is the best place for her. I feel guilty that she will lose her independence, the ability to make some daily choices and, in many ways, her liberty, but she will be safe, cared for, stimulated and hopefully, at some point in the future, happier.

I am glad she reinforced what we have suggested...I also wish every area had these Admiral Nurses...wasn't one in Dads area which was a shame

 

[LadyA]

I'd like to think if I had Alzheimers I'd check myself into a CH whilst still able to do so in order to spare my relatives.

We would all like to think that. Unfortunately, the nature of the illness is such that we probably wouldn't. And also, it's not as simple as checking into a Care Home, unless of course, a person is seriously wealthy, considering Care Homes can cost between £1,000 and £1,500 per week.

 

[Amy in the US]

Redlib, please don't feel guilty! You are not taking away her independence and ability to care for herself and make decisions. Dementia has done that. Not you, the disease. It would happen whether or not you were there. Dementia is a progressive disease. The person with dementia, gets worse. Sadly, we cannot stop the deterioration.

Here on TP we talk a lot about the GM, or guilt monster. You already have enough to deal with, don't allow the guilt to make it worse.

It is not your fault that your mother has dementia. Put the blame where it belongs: dementia. The disease is the enemy, not you.

You have done nothing wrong. You are not a bad person. I know it can feel that way, but we are here to tell you again: dementia is the enemy.

Please try to be kind to yourself and get some rest. I know it's terribly difficult, and I'm sorry.