Elderly bedridden mother wants to go home - advice please!!!

nightsong

supersuzie50 wrote: »

I wish you luck in your situation. Do write to everybody detailing your worries in black and white.

I am in exactly the same situation, mother wants to return home after a long spell in hospital. She tells lies to all in control. I have told them the truth but they still believe her that she can live independently. I have been living with her for the last two years - it is soul destroying. Professionals seem so gullible - until I become ill and can no longer cope - then I am no use to anyone.

She is so arrogant but this time, I am going to go out when the carers arrive even if I sit in the local coffee shop!!!! I am going to go to the local gym. I have to have time to myself - otherwise I will get so depressed again.

Whilst mother was in hospital, another daughter arranged for her mother to go in to a nursing home. The daughter did not return. The mother was distraught. I suspect neither could cope with the situations - this was hard for the daughter but it worked.

I sympathise completely. You absolutely must keep some life for yourself - I know it's hard. It's so easy to become depressed in this situation. So yes, go to the coffee shop or gym and let the carers get on with it!

One of the things that makes me so angry with the care system is this short sighted policy of heaping everything on relatives until they can no longer cope. Then SS have to pick up ALL the pieces. They would have less work/expense in the long run if they provided more support in the first place.

Whilst mother was in hospital, another daughter arranged for her mother to go in to a nursing home. The daughter did not return. The mother was distraught. I suspect neither could cope with the situations - this was hard for the daughter but it worked.

I can understand the pressures that lead to something like that. I hope I can stay strong and avoid such an outcome, but I don't blame anyone who does that. As you say, it works and sometimes carers are at breaking point.

nightsong

rogerblack wrote: »

Which she can - if she is mentally 'with it' - revoke at any time.

Neglecting everything mentioned above - there are technical aids which will at least help somewhat with the risks.
These vary from emergency pendants that are worn round the neck, and allow someone to press a button to summon help, to similar devices that are basically 'always on' and detect lack of movement when there should be some.

If she is willing - even setting up a wifi network - and several wireless cams in the house to let you look in and see if she's OK at any time - and call for help if she's not.

Falls are clearly a major risk - but at least in principle, the prospect of having a major problem and that being undiscovered for many hours or days can be mitigated.

Thanks, very sensible and logical. She does wear a pendant which summons help if needed.

My concern with all these things is that help won't be available fast enough if she can't breathe. I see that they are good for something like falls where usually people can survive for a while, but not breathing tends to get terminal rather fast.

Mojisola

nightsong wrote: »

My concern with all these things is that help won't be available fast enough if she can't breathe. I see that they are good for something like falls where usually people can survive for a while, but not breathing tends to get terminal rather fast.

If she is fully with it then that is a choice she is making.

If she doesn't really understand the potential problem, then maybe she shouldn't be making her own decisions.

missbiggles1

nightsong wrote: »

Thanks, very sensible and logical. She does wear a pendant which summons help if needed.

My concern with all these things is that help won't be available fast enough if she can't breathe. I see that they are good for something like falls where usually people can survive for a while, but not breathing tends to get terminal rather fast.

Are you worried that she doesn't use her oxygen when she should or whether there's a power failure?

DavidF

I want to preface by saying I have been here myself with my now late mother. She wanted to come home and with the correct care package she could have come home.....just it took social services far too long to agree or even begin to implement a care package.
The reality is that the hospital do there bit and then NEED that bed for another. Then (in my mums case) it was decided to put her in a nursing home until she was well enough and the care package and home aids were installed to facilitate her coming home. We found that the nursing home wanted to release her asap....even though none of the agreed care/home aids were ready nor installed. The reality was my 75yo dad who was himself recovering from a cancer op was expected to take her home and carry her up and down stairs and toilet her as well as cook/clean and look after her......He so wanted to do so but just was not well enough to do so.
You find that these services are so over stretched and under funded that they really just want you off their list/books and to become someone elses problem. This i found true from hospital right through to care home/nursing home and social services.
The whole experience has left me feeling that other nations and cultures handle this situation much much better than we do. So with that regard we as a family have resolved to look after my father totally within the family unit - I know every family can't do this but it is what we have done and to that effect I and my partner have moved back into my childhood home and we make sure we are there for him.
It is such a shame that these days our way of life has necessitated the need and use of so many care/nursing homes. I never look at my father as a burden...Otherwise I must have been a burden to him when he had to look after me when a child.
I know it's so easy for me to sit here and type this but it does make you think deeply about things. Other cultures manage so well but we seem to not be able to.

nightsong

Mojisola wrote: »

If she is fully with it then that is a choice she is making.

If she doesn't really understand the potential problem, then maybe she shouldn't be making her own decisions.

I don't think it's that simple.

To talk to her she seems completely rational and intelligent (or has done until very recently and even now it's just the odd lapse). I don't think she could be considered to lack capacity on that basis.

Her lack of insight into her condition is as much about her personality as her mental acuity. She is in denial about what's happening.

Having just thought about this I guess she does lack capacity in this area, and that is what I should be saying to the social worker. Thanks.

nightsong

missbiggles1 wrote: »

Are you worried that she doesn't use her oxygen when she should or whether there's a power failure?

No, I actually hadn't even considered a power failure .

I'm concerned that she will slump in her bed or chair, which she does several times a day, and as she is unable to right herself, will basically suffocate before help arrives. Unless there is someone there to put her upright, her breathing is very seriously compromised and she panics. So far there always has been someone there - either a nurse (in hospital or the nursing home) or, very luckily, my aunt on the day she had come home to the flat.

nightsong

DavidF wrote: »

I want to preface by saying I have been here myself with my now late mother. She wanted to come home and with the correct care package she could have come home.....just it took social services far too long to agree or even begin to implement a care package.
The reality is that the hospital do there bit and then NEED that bed for another. Then (in my mums case) it was decided to put her in a nursing home until she was well enough and the care package and home aids were installed to facilitate her coming home. We found that the nursing home wanted to release her asap....even though none of the agreed care/home aids were ready nor installed. The reality was my 75yo dad who was himself recovering from a cancer op was expected to take her home and carry her up and down stairs and toilet her as well as cook/clean and look after her......He so wanted to do so but just was not well enough to do so.
You find that these services are so over stretched and under funded that they really just want you off their list/books and to become someone elses problem. This i found true from hospital right through to care home/nursing home and social services.
The whole experience has left me feeling that other nations and cultures handle this situation much much better than we do. So with that regard we as a family have resolved to look after my father totally within the family unit - I know every family can't do this but it is what we have done and to that effect I and my partner have moved back into my childhood home and we make sure we are there for him.
It is such a shame that these days our way of life has necessitated the need and use of so many care/nursing homes. I never look at my father as a burden...Otherwise I must have been a burden to him when he had to look after me when a child.
I know it's so easy for me to sit here and type this but it does make you think deeply about things. Other cultures manage so well but we seem to not be able to.

Well good for you and good luck with your decision. I'm sure it won't be easy.

I never look at my father as a burden...Otherwise I must have been a burden to him when he had to look after me when a child.

I don't see it that way personally. People choose to have children and therefore have a responsibility towards them that certainly lasts until they are grown-up and possibly for life. I wouldn't expect my kids to look after me, but of course I don't feel they were a burden.

Partly I suppose it depends on the relationship you had with your parents earlier. Mine were very little help to me, and I could have used their support especially after having my disabled son. But they still always expected me to be there for them. They have both resented that I didn't have them to live with me in their old age.

I expect people who have received a lot of support and love from their parents have a much more positive attitude about giving something back.

margaretclare

DavidF wrote: »

I want to preface by saying I have been here myself with my now late mother. She wanted to come home and with the correct care package she could have come home.....just it took social services far too long to agree or even begin to implement a care package.
The reality is that the hospital do there bit and then NEED that bed for another. Then (in my mums case) it was decided to put her in a nursing home until she was well enough and the care package and home aids were installed to facilitate her coming home. We found that the nursing home wanted to release her asap....even though none of the agreed care/home aids were ready nor installed. The reality was my 75yo dad who was himself recovering from a cancer op was expected to take her home and carry her up and down stairs and toilet her as well as cook/clean and look after her......He so wanted to do so but just was not well enough to do so.
You find that these services are so over stretched and under funded that they really just want you off their list/books and to become someone elses problem. This i found true from hospital right through to care home/nursing home and social services.
The whole experience has left me feeling that other nations and cultures handle this situation much much better than we do. So with that regard we as a family have resolved to look after my father totally within the family unit - I know every family can't do this but it is what we have done and to that effect I and my partner have moved back into my childhood home and we make sure we are there for him.
It is such a shame that these days our way of life has necessitated the need and use of so many care/nursing homes. I never look at my father as a burden...Otherwise I must have been a burden to him when he had to look after me when a child.
I know it's so easy for me to sit here and type this but it does make you think deeply about things. Other cultures manage so well but we seem to not be able to.

I am really not convinced that any other nations/cultures manage this any better than we do. I'm aware that in some cultures it's the job of the daughter(s)-in-law to look after husband's parents, but that must mean that their own lives/ambitions/aspirations are put on hold or assumed to be less important.

Looking after children, when you're a parent, is completely different. You chose to have those children. The people who have contributed to this thread did not choose to be put in this position.

One must also consider the difference between physically handling a baby or toddler and an incapacitated adult. Surely, someone could have seen that your Dad could not carry his wife up and down stairs? Unless he was a rugby-playing ex-fireman he would never have been able to do this! Why didn't someone point this out?

To the OP, I used to do a bit of agency-typing for a sub-section of the hospital services. An OT/physio/rehab person would go with a patient to his/her home on a temporary visit just to see if he/she had a hope of being able to manage if discharged. Quite often they'd be brought straight back. One lady I knew - she used to go to the same church as me - was taken indoors to where she'd lived for 50 years, asked to make a cup of tea in her kitchen. She couldn't even remember where the kitchen was!

nightsong

Parva wrote: »

I totally understand this point of view and realise that it's such a tough choice. That said, I am seeing both my Mum and my Uncle (nan's daughter and son obviously) being slowly eaten away by my Nan who's 86 (I think). She will in no way go into a home or accept that she's too frail to do anything, hell she's wanting to book a holiday in Benidorm. The truth is that she can't even make it up the road to her local Tesco's.

I guess it will come to us all eventually although I'm hoping that I can accept the "I can no longer do this" regime before I become a burden on my family. My Nan doesn't see what she's doing to her son and daughter, indeed she doesn't even believe she's frail despite numerous falls and hospital / doctors visits.

I love her to bits but I hate seeing how much pressure she's adding to my mums and my uncle's life, and she doesn't realise she's doing it. She's totally oblivious to the stress and tension she's causing the family because she is determined to cling on to that independence. I know there's two trains of thought on this but my train (and particularly since I have entered the disabled club) is that I would do anything to avoid putting pressure on others when I begin to struggle.

And yes, I would go into a nursing home if I could not function alone. I know it's not so cut and dried when it's parents and really feel for you on this.

I agree with you. Your post is very insightful, thank you.