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

pmlindyloo

This is so difficult isn't it?

I fully respect everything everyone has said but being totally honest no one knows exactly how you feel emotionally about things.

You have now made the decision to step away from the sorting out of where she goes after discharge and this is fine/good even.

However, this does not stop the emotional tie that you have because she is your mother - no matter what kind of mother she is.

You already know about my mother. I am going to write what I said to my sister.

My sister did not want to visit my mother very often because of the kind of person my mother was. She felt guilty mainly because of the responsibility this put on me.

I explained to my sister that I was happy to take on that responsibility and how I was dealing with it.

I told my sister that only she could make the decisions how she dealt with it. The important thing (at least for me) is how you deal with it when they die Will you feel guilty about what you did do/didn't do? Would this be a life changing guilt which may affect you for years or a natural guilt that anyone would have?

It is about living with your actions after she has died. I can live with what I did (OK still have a few guilt feelings but doesn't impact on my life).

Unless you have come to terms with things it is often better to do more than less. This sounds strange but I believe that worrying and stressing yourself out from a distance is worse than getting on with things that you can do although they are pretty da*m awful.

Hope you don't mind my saying that.

Hope you find some inner peace (don't mean to sound dramatic but couldn't think of a another way of saying it!)

nightsong

pmlindyloo wrote: »

This is so difficult isn't it?

I fully respect everything everyone has said but being totally honest no one knows exactly how you feel emotionally about things.

You have now made the decision to step away from the sorting out of where she goes after discharge and this is fine/good even.

However, this does not stop the emotional tie that you have because she is your mother - no matter what kind of mother she is.

You already know about my mother. I am going to write what I said to my sister.

My sister did not want to visit my mother very often because of the kind of person my mother was. She felt guilty mainly because of the responsibility this put on me.

I explained to my sister that I was happy to take on that responsibility and how I was dealing with it.

I told my sister that only she could make the decisions how she dealt with it. The important thing (at least for me) is how you deal with it when they die Will you feel guilty about what you did do/didn't do? Would this be a life changing guilt which may affect you for years or a natural guilt that anyone would have?

It is about living with your actions after she has died. I can live with what I did (OK still have a few guilt feelings but doesn't impact on my life).

Unless you have come to terms with things it is often better to do more than less. This sounds strange but I believe that worrying and stressing yourself out from a distance is worse than getting on with things that you can do although they are pretty da*m awful.

Hope you don't mind my saying that.

Hope you find some inner peace (don't mean to sound dramatic but couldn't think of a another way of saying it!)

Thank you, that is very sensitive and helpful.

I have had a lot of anger about my childhood and the lack of parental support throughout my life (they made me homeless when I was 19 for example. There are a lot of examples, but I won't go on here).

Some years ago I had counselling and it mostly revolved around these issues, not surprisingly. In the end I decided on how much I would see her and how much contact we had, and enforced it. I did my best to ensure that she didn't get to me too much. It's worked reasonably well for the last decade or so.

At the moment I feel I am doing a reasonable amount for her. I haven't given up and run off to a Scottish isle, much as I have been tempted. In a sense my aunt is in the position you were in - she lives a few streets away from my mother and so has shouldered the burden much more than I have - not physical care, but emotional support mainly. I do feel a bit guilty about that, but she is also in a position to draw whatever boundaries she wants around her involvement. It's her concern really.

I feel better today as I made a list and am working through contacting people. As you say it does help to do something. But that's all I'm doing before we go away, and I'm ok with that.

Because of the counselling I hope I've come to terms with what's gone on and won't have to struggle with too many issues after she dies. I don't know, though - who can say in advance?

Savvy_Sue

Errata wrote: »

To do what? There's nothing short of very imminent death that can't wait a few days.

nightsong wrote: »

Because of the counselling I hope I've come to terms with what's gone on and won't have to struggle with too many issues after she dies. I don't know, though - who can say in advance?

What I found myself doing with Dad was treating each visit as if it might be my last, even before he deteriorated badly.

After I got the 'is your mother coming to visit, he's very poorly' call, I stayed a night at his bedside, and then went home. My mother and some of my siblings were there when he died, but I'm OK with the fact that I wasn't. I'd done what I needed to do by then.

I think my siblings were quite surprised that I didn't want to speak at his funeral, or write a tribute. I loved him dearly and knew that he loved all of us very dearly, but found myself quite angry that he'd been quite weak in some areas, not protecting us in some ways. I couldn't do the 'perfect father' tribute, so felt it better to say nothing.

Parva

Perfect reply Sue, couldn't have worded it better! My dad's determined to see himself off this mortal coil very soon and I'm dreading what awaits (he's already told me he's left details of what he wants in a drawer in his bedroom). I don't really want to see him go, he's my dad but ultimately he's alienated everyone he knows through drinking and I hate him for it. I'm more worried about what awaits when he goes.

nightsong

So, an update for anyone who would like to know - and another request for some advice, please.

She is still in hospital. I saw her on Thursday and discovered that she was on the path to being discharged back home with the same care package she had before (the maximum allowable, i.e.2 carers 4 times a day). It didn't work last time (she lasted six hours at home and was then readmitted to hospital in an ambulance with breathing difficulties) and since then she has deteriorated physically.

I asked to speak to a doctor and got a fantastic young woman who managed to be both compassionate and extremely blunt, which I thought was a pretty good combination. She asked my mother a series of searching and relevant questions about how exactly she would manage at home, which of course my mother couldn't answer. At the end, the doctor told my mother that although it was her choice she should think very seriously about going into a nursing care home. My mother appeared to have accepted this, although knowing her she may have changed her mind by now.

Anyway, it seems like the next step for me is to research care homes in the area, ring them up, get brochures, compare prices, work out which ones she can afford, drive 150 miles to visit them, choose one and tell my mother where she is going.

She won't like whatever I choose and she will blame me for putting her somewhere she isn't happy. And if I try to get her to accept some responsibility for choosing she will go all helpless and meek and "you know best dear".

Also I presumably have to arrange for her to give notice on her flat, tell the utilities, choose what she's taking to the care home and dispose of the rest. I expect there's more that I haven't thought of. I have already removed the valuables and sentimental items from the flat as stuff is beginning to go missing, so I wouldn't care if I never went there again. I have her cheque book and a building society savings bond for £50,000. And I don't have power of attorney.

I'm noticing that I am increasingly unable to deal with all this. I'm sleeping badly and when I do sleep, I have nightmares. I cry a lot. I don't want to leave the house and I haven't washed my hair for two weeks. Going to the north of Scotland and not coming back till Christmas is looking more and more appealing.

So here's my question - (deep breath).

What happens if I don't do it? That's it in a nutshell. There isn't anyone else to step in - I'm quite sure my 92-year-old aunt won't do it and I wouldn't expect her to.

There must be a protocol for this situation - there are plenty of old people with no relatives. What happens?

margaretclare

How awful for you. And what a load of responsibility seems to have landed on you. I can quite understand your wish to get as far away as possible from it, especially as you say - with feeling - that whatever you do she won't approve and will let you know she doesn't approve!

She can't go home. That's obvious, has been obvious from the very first post you wrote. Maybe it would be a good idea for you to give notice on her flat etc. She can never go back to it. And put all her things into storage? That would be cheaper than paying rent, council tax, utilities etc that she won't be using.

As regards choosing a suitable home for her, I don't know about that. Leave it to the 'powers that be'? It's just too much for any one person who isn't close to.

Maybe someone else can suggest a better option.

Mojisola

nightsong wrote: »

And I don't have power of attorney.

I'm noticing that I am increasingly unable to deal with all this. I'm sleeping badly and when I do sleep, I have nightmares. I cry a lot. I don't want to leave the house and I haven't washed my hair for two weeks.

What happens if I don't do it? That's it in a nutshell. There isn't anyone else to step in - I'm quite sure my 92-year-old aunt won't do it and I wouldn't expect her to.

There must be a protocol for this situation - there are plenty of old people with no relatives. What happens?

Social services will step in and arrange everything.

You will have to be very firm but all this worry isn't worth damaging your health.

LL30

Ok. Not what you want to hear but, if you leave it to SS, she will more than likely go back home. They have assessed her as able to go home, if the nurses had thought otherwise, her checklist would have been positive and she would have gone through for a DST. Unfortunately doctors can have a terrible understanding of the funding for these things, and how the processes work. It's not uncommon for me to see 'for 24hr care' written in notes, and for doctors to tell relatives that's what their loved ones need, but they have little comprehension of the process and eligibility criteria.

Have you been in touch with her social worker? They will help with the house etc but, if your Mum says she wishes to go home to them (which it sounds like she might) then that's what they'll help her to do. You need to put your trust in the social worker, and get them to question the checklist if you believe she should be in a nursing home. If she meets the criteria, and it is proven that her medical problems cannot be dealt with effectively at home, then it may be that a DOLS would have to be put in place if she doesn't wish to go to a nursing home. This is about the professionals finding the right discharge destination for your Mum, and I think you're making it more difficult for yourself because you're trying to do their job (and it's bl00dy hard!).

If your Mum as a self funder, says that she does want to go into a nursing home, the social worker should know of local resources which would be able help with the flat and associated issues. The one thing to remember is that if social services have not assessed your mum as eligible for a residential home, never mind a nursing home, they will not fund it if your Mum runs out of money to pay for it.

I really feel for you, it really is a terribly difficult situation but I can't help but wonder where the social worker and health professionals in charge of discharge planning are in all this? It is their jobs, their risk assessments and their professional judgments which should be driving this, it's far too much for you to take on xx

Inquisitive62

nightsong wrote: »

Hi all,

I know there is a wealth of knowledge and good counsel on this forum and I would be so very grateful if anyone could help me with this dilemma, please.

My mother is 93. She has various serious health problems- heart disease, pulmonary obstruction (she uses oxygen a lot of the time), circulation problems leading to leg ulcers, osteoporosis. She is now pretty much bed-ridden and can't bear her weight.

On the plus side (!) she has no signs of dementia and is intelligent. I don't have power of attorney because despite her physical fragility she can make her own decisions and, for example, write cheques.

She has been in hospital for most of the last three months, but desperate to go home. This was attempted a few weeks ago, with carers coming in four times a day. She lasted six hours before being in so much pain, from a carer who positioned her wrongly in her chair, that my aunt had to call and ambulance and she ended up back in hospital.

As she couldn't seemingly stay in hospital forever (and wasn't happy anyway) I arranged for her to go into a nursing home. She hates it there. She says she might as well be in hospital - and despite it being a good (and expensive) home with a fine reputation, I tend to agree. She was lucky enough to get excellent nursing care in her local hospital and I think she would be best off back there.

So, the nursing home placement is now a respite period instead. In four weeks we have to move her out. She is once more desperate to go home and coming up with all sorts of reasons why this is the best option.

I think it's insane frankly, because of her multiple physical issues and fragility, and think we should find her another nursing home. But she is adamant, and she is lucid. The social worker who has taken her case on suggests I ring the local authority and get her care package reinstated so she can go home. He has not met her of course and I think the original decision that she was fit to go home was flawed, but that is what's on her record.

I'm pretty sure this will once again end in tears and she will be back in hospital - BUT, I actually think this would be the best outcome. On the other hand it seems madness to me to help her go home when my agenda is really that she should be back in hospital. There is also risk involved - suppose she is seriously ill or dies while we wait for an ambulance for instance.

I'm not entirely sure exactly what my question is, but I hope you get the drift. It's along the lines of - would it be right for me to insist on her going to another nursing home for her own safety, given that she is so frail, but knowing that she really doesn't want to? Alternatively,would it be right to facilitate her going home, knowing that my agenda here is that I think it best for her to end up back in hospital? And if the latter, what could I do to make this as risk free as possible?

Or to put it another way, what would you do, and why?

Thanks in advance for any kind posters who can help me here.

I totally feel for you. My Dad absolutely hated the hospital, wouldn't contemplate a residential home. He just wanted to be in his house. Unfortunately, I lost him a few weeks ago, however, we were in the process of contemplating the following: Full time live in carer. Expensive, but kills two birds with one stone. Retirement Village/warden assisted, where your Mum has her own apartment. 24 hr help on call. Company if she wants it, if not close her own door. Most retirement villages have residential homes, so if it becomes too much your Mum has already made friends with the residents, knows the staff and maybe more amenable to selling her apartment and moving into the home. In my home County, you can have 8 weeks of rest bite per year at a flat fee. So make the most of rest bite, for you as well, because at least your Mum knows she's going home after her little holiday. Finally, many residential homes run day centres, which is another way of gradually introducing your Mum to the idea. She can make friends and will probably end up looking forward to going. Well, I wish you the very best and take time to think of yourself too, that's important. The problem is they are our parents and we love them and want to make sure they are happy, as they did with us. Good luck.

nightsong

Thank you everyone, empathic and very helpful as ever.

LL30, you mentioned my mother's social worker. I asked the doctor last week if she had one and she said no. I take it from your post that she should have a social worker? Also I understand you to be saying that unless they assess her as needing nursing care she won't get the funding, which I hadn't considered. Thank you.

The doctor said that her last discharge home wasn't considered a failure because when she was readmittted (later the same day) she had a chest infection, so it wasn't thought to be a fair trial of how she could cope with the care package they had arranged. Of course this means they probably sent her home with a chest infection - it's unlikely she developed one in six hours. Anyway, if going home doesn't work this time my impression is that they won't try it again. Edit - or maybe they will? Is there a limit to the number of times they will arrange this - it must be quite expensive getting the carers in place, especially if they then are only needed for a very short time?

I have to say that I don't understand the criteria for sending someone home. She is doubly incontinent and bed ridden. She can't get on and off a bedpan without help. How is she supposed to manage for twelve hours at night on her own? Sorry to be graphic. She also can't position herself to be able to breathe safely if she slips down in the bed or chair.

Seriously, all these things are known by the hospital, so how can they be doing this? Is it that they legally have to do what she wants, or that it's the cheapest option - or a combination of the two?

I think it's becoming clearer what I need to do for now - keep saying that I think she needs residential nursing care (for what my opinion is worth, not much I guess) and just put the ball back into their court as much as possible. I don't need to be proactive, they are very keen to get her out of her hospital bed so presumably they will contact me.

For now she is safe in hospital. If it comes to it and she is sent home I'm sure it will only be a matter of hours before she is back in hospital. I can try to get my aunt to keep an eye on her for those hours.

It's curious how detached I am becoming from all this - almost as if it's happening to a stranger and not my mother. That's probably not very healthy psychologically but at least it makes it a bit easier to cope.

Thanks again, all.