Has anyone tried to go from CH back to independant living?

[bad daughter]

So many variables

A good CH will supply stimulation, immediate response to any medical emergency, warmth, company, good food, cleanliness, personal hygiene, outings, activities. With all those plusses it would take a very big minus to weigh the scales in favour of home care.

Some people are a lot more wonderful than me and want to do it, but we would at best have Mum back in her own home with full-time carers. What would that bring? Upside, a little more independence. Downside? from past experience that would include wandering off at night and knocking on strangers' doors; not eating properly or at all; much lower standards of cleanliness; repeated claims that she hated the house and wanted to buy a new one (that was an expensive aborted exercise last time around!); falling out with and sacking of carers on a regular basis and - the biggie - not being any happier than she is now.

Of course if we didn't like the CH we wouldn't let her stay there. But it couldn't be better. She's bright and active when we are not there. Seeing friends and family triggers a "get me outta here" reaction which is difficult to deal with but as others have said can't be taken at face value. She's unhappy because of her condition (and actually she was never really that content when she was well) and that's that.

I find the best way to visit is to go for an outing - just a trip to the local Spar supermarket then lunch out will do. It's a distraction technique that works relatively well. Anything rather than being trapped in her room and unable to escape the tale of woe!

I don't want to disparage anyone who cares for their relative themselves, I just know none of us could do it and the alternative (in her own home with live-in carers) wouldn't work. Doesn't mean we don't all have a constant niggle in the back of our minds that we should at least try it, if only to prove that it wouldn't be any better!

 

[Padraig]

The answer to the question is very much of individual choice. In my case I could no longer suffer the sight of my wife slowly die in a very painful manner. When I removed her from the NH she was already bedridden and had a pressure mattress because of numerous pressure sores. She had already loss the will to live and refused to eat. Shortly after her home coming we had to have a rapid response team of nurses to attend her. None the less I insisted on being involved in all her treatment and the medical records reveal that we were not always in agreement. They offered Community Macmillan Nursing Services for Jean. The nurse duly arrived, but like most other offers of help I declined her help. I still have her card with her name and phone number. After two weeks the rapid response nurses attendance their service was no longer required. It was a full nine months before I decided to dress Jean in her outdoor cloths; raise her into her wheelchair and take her for her first outdoor stroll; it was a Christmas day.
By the beginning of the following year her medical notes; all 30 pages closed and I was happy there was just the two of us left to get on with with our lives. It was not plain sailing. Unexpected problems surfaced; like seizures, bleeding from her bottom etc. These necessitated hospital visits, but I had learned from earlier experiences not to allow her to be kept in hospital. In the beginning the doctors were not willing to release her, but I suggested they try stop me removing her. After that they were happy to go along with my judgment as they could see the vast improvements over years they forecast she would not be alive.
Sorry, this posting is too long and it would take a book with photographic, and medical evidence to tell our story that might be of use to someone.

 

[end of my rope]

Independent living - the first two weeks

Hi

My mother lasted five weeks in a nursing home - it was a complete disaster. I have posted on other threads and started some of my own regarding the last few months of mum.
She is now living in a two bedroom private retirement community ground floor apartment. After two weeks there have been ups and downs. She has regularly complained and is still not happy however I have held firm - no more moves. She is currently in the early to mid stages I think and needs support with regard to finances etc (I am in the throes of gaining power of attorney).

My mum is kind of coping and believes she is doing a fantastic job - so her self-esteem has begun to rebuild. She is beginning to develop routines and habits such that she can manage some of the day to day activities. She clearly knows where she is (ish) and is sufficiently well known to the warden, the local taxi company (I phoned them to advise and they have her on their records along with my contact details) the postie and the bus drivers that while things might go askew they will not be dreadful.

For now things are ok. I am sure that there will be slight improvement (in terms of mum being glad about having own front door and independence, being proud of how much cleaner it is than when she moved in, establishment of new contacts - she can't work the washing machine in the apartment but has made friends with a lady in the launderette and gets a bargain service wash done for her) and some more problems including loneliness, and of course in time there will be further degeneration because of the illness.

On balance this is better - for the first time in a long time I had a phone call with mum today which although it lasted 1 hr 6 minutes did not include her breaking down in tears.

not quite at the end of my rope today... :http://forum.alzheimers.org.uk/images/smilies/smile.gif

 

[at wits end]

Thank you all for your ongoing responses to my thread.

Perhaps I should add at this time that I have made the decision to leave gran in her NH. I wouls get no support from my family if i were to move her and I do not believe I could find a better group of people to care for her, or a nicer environment for her to live in.

She would rather be at home, that is true, but in that utopia she has built up she would order her groceries online (cant use a computer and cant read anything because she wont wear her glasses), and cook her own meals (hadnt been able to remember how to use a cooker for over a year). She would have lots of company (one neighbour she was friendly with and me) and be able to pop to the shops whenever she liked (cant walk round car park without support).

I have no desire to sacrifice any more of my life to becoming her permanent carer. She is my granmother, not my child or my spouse or even my parent. I am not a bottom wiper, I am her grandaughter who would fight for her for injustices that may come her way, but I have not forgotten how unhappy she was at home even if she has.

She thinks that moving home would solve all her problems, I know it would be the same problems just in a different setting.

 

[end of my rope]

You did the right thing

Hi Helen

I have just read your last post and you've done the right thing.

On re-reading what I wrote I hope I didn't sound smug or heartless - we all struggle with this disease at its various stages and what works this week for person y won't work later on for person y or now for person x. I really hope that you get the opportunity to enjoy being a grand-daughter and can begin to live your own life while still checking in on your Gran as often as works for you.

Best of
(not quite) end of my rope x

 

[at wits end]

Not at all end of my rope.

I just wanted to reassure people that she was in a good place and no less happy than she was at home. We still have tears some days, but she is easily soothed by a walk or a cuppa. If she were a closer relation I would like to think I would have fought to keep her at home longer, because I would have been driven by love in that case.

I often think of the rich and famous and can imagine an article where they add 'and despite all this she manages to visit her elderly demented mother once a month'! If only those at the sharp end got the appreciation we all deserve for all we do.

I also think there is a lesson to be learned here about downsizing whilst of sound enough mind to realise your limitations. If gran had moved into sheltered housing when my granfather had died she might have managed to stay there longer with the extra support. SHe thinks it is rational for a 99 year old tiny lady to live alone and manage their own home still. I've never even known anyone her age before, let alone one that lives alone!

Sorry i'm wittering now, lots to get off my chest still!

 

[Wolfsgirl]

Wow the amount of care, concern and compassion I have seen from you towards your Gran on TP, she is priviledged to have you in her life.

Not at all end of my rope.

I just wanted to reassure people that she was in a good place and no less happy than she was at home. We still have tears some days, but she is easily soothed by a walk or a cuppa. If she were a closer relation I would like to think I would have fought to keep her at home longer, because I would have been driven by love in that case.

I often think of the rich and famous and can imagine an article where they add 'and despite all this she manages to visit her elderly demented mother once a month'! If only those at the sharp end got the appreciation we all deserve for all we do.

I also think there is a lesson to be learned here about downsizing whilst of sound enough mind to realise your limitations. If gran had moved into sheltered housing when my granfather had died she might have managed to stay there longer with the extra support. SHe thinks it is rational for a 99 year old tiny lady to live alone and manage their own home still. I've never even known anyone her age before, let alone one that lives alone!

Sorry i'm wittering now, lots to get off my chest still!

 

[Witzend]

I also think there is a lesson to be learned here about downsizing whilst of sound enough mind to realise your limitations. If gran had moved into sheltered housing when my granfather had died she might have managed to stay there longer with the extra support. SHe thinks it is rational for a 99 year old tiny lady to live alone and manage their own home still. I've never even known anyone her age before, let alone one that lives alone!

Agreed, but IMO the problem is that when people are still relatively with-it, active and able to manage, they don't see the need and don't want to go and live among what they see as a load of decrepit old people. It's like admitting you are old and can't cope when you don't feel old and certainly can still cope.

By the time they are getting a bit old and doddery they cling to familiarity and simply can't face all the colossal upheaval of moving, having to get rid of well-loved things, etc.

My mother downsized to a smaller, more manageable house after my father died (she would have been a fairly young 70) and later (pre AD) she talked endlessly of moving to a 'little flat'.
We went and looked at masses with her, but according to her there was always something wrong with them (to be fair, I could nearly always see her point).

She never did move, except to the CH. I honestly think that as time went on, although she liked the idea of it, she simply couldn't face the reality.

 

[Tartuffe]

Thank you all for your ongoing responses to my thread.

Perhaps I should add at this time that I have made the decision to leave gran in her NH. I wouls get no support from my family if i were to move her and I do not believe I could find a better group of people to care for her, or a nicer environment for her to live in.

She would rather be at home, that is true, but in that utopia she has built up she would order her groceries online (cant use a computer and cant read anything because she wont wear her glasses), and cook her own meals (hadnt been able to remember how to use a cooker for over a year). She would have lots of company (one neighbour she was friendly with and me) and be able to pop to the shops whenever she liked (cant walk round car park without support).

I have no desire to sacrifice any more of my life to becoming her permanent carer. She is my granmother, not my child or my spouse or even my parent. I am not a bottom wiper, I am her grandaughter who would fight for her for injustices that may come her way, but I have not forgotten how unhappy she was at home even if she has.

She thinks that moving home would solve all her problems, I know it would be the same problems just in a different setting.

I think you have answered your own post now you have been able to work through and reflect on the realities of the dilemmas you are faced with - well done you! you need a really good pat on the back and I find your honesty and frankness really refreshing.

I work as a community care practitioner and I am regularly involved in assisting people and their loved ones make the difficult decisions about support at home and to be honest there isnt a right or wrong answer, it is entirely based within individuality and personality. Just as the effects of dementia are unique and specific to the personality so are the ways and means we have to respond. many of the responses to this post have described actions taken both for and against living in care homes and each one has been unique and specific because everyone is different - the huge challenge therefore is how do we as a bigger society hope to be able to respond and support people who only have the diagnosis of their condition in common?

if you know that in your Grans 'best interest' that she needs to be in a continually supportive enviroment then perhaps you can consider with the staff and with advice and support from your local alzheimers branch what it is that is making your gran unhappy? There are always triggers, no matter how small and inconspicious and often just by recognising and addressing them, even in a small very subtle way can make a hige difference to the wellbeing of the person involved.

in a previous'life' I managed several care homes that specifically provide support to people with moderate to advanced dementia and the mantra of "look for what you have in common with someone rather than what sets you apart" has always been both my personal and professional viewpoint. make sure the home have a person centred care plan for Gran that sets out clearly what she likes and doesnt like (you will be able to provide them with a unique viewpoint as you know her strengths!) and ensure that she is supported to exercise her right to citizenship.

Keep strong.

Nickyx

 

[Kebuck2012]

Helen

Just read your thread.

I know of a carer who took his mum back home from a care home to care for her, and she is much happier. However, I rather suspect her level of dementia is early stage, and I know she was put into the care home against her wishes by other family members.

Also, I know the carer (the son) does find it hard because some nights he does not get much sleep. But overall both the mother and son are much happier.
Hope this helps,

Paco

Mum is wakeful at night and has had D&V which has worn me out, I am trying for some respite, I know it takes a while just bringing mum back after a weeks CH, so someone who might be institutionalised may be tough work, get Complex Care team on board, the squeeky wheel gets the grease. Has anyone managed to get a funded night sitter?

 

[Witzend]

Hi

My mother lasted five weeks in a nursing home - it was a complete disaster. I have posted on other threads and started some of my own regarding the last few months of mum.
She is now living in a two bedroom private retirement community ground floor apartment. After two weeks there have been ups and downs. She has regularly complained and is still not happy however I have held firm - no more moves. She is currently in the early to mid stages I think and needs support with regard to finances etc (I am in the throes of gaining power of attorney).

I can't help thinking that from what you say, your mum's dementia isn't nearly as bad as that of many of our relatives who eventually go into care homes. By the time we finally made the CH decision, there was absolutely NO WAY my mother could have coped with any sort of new flat on her own, however much help was provided. She needed care and supervision all day, all night, day in day out.

I think there are many of us who would say the same, so the idea of going into any sort of 'independent' accommodation simply wouldn't arise.

I do hope it continues to work reasonably well for your mum.