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

Mojisola

nightsong wrote: »

OK, latest update - she has been moved to a ward specialising in "care of the elderly". Every time I ring I am told she is "comfortable" which I'm glad to know but is not exactly informative!

Might the new ward mean anything in particular? Or is it just that her care is no longer for an acute condition?

When my Dad was on a similar ward it was because there was a higher staffing level - whatever other illnesses the patients had, they also all had problems related to their age - dementia, risk of falls, needing help with eating meals, etc, and so had extra care and supervision.

nightsong

Well,it's 2 a.m. and once again I have unanswered questions stopping me sleeping. I hope I'm not trying your patience too much to ask for some more advice.

Since my change of heart at the weekend, when I realised (largely thanks to posters here) that I had been pressuring my mother to go into a nursing home and this was wrong, I have basically done - nothing.

I spoke to her on Sunday, and left things open - told her all options were still potentially available and it was her life and her choice.

I did email her social worker twice - once (before the epiphany) to say that I really didn't think she should go home, and detailing why, and secondly to say that actually I thought it was her choice. Probably confused the poor man thoroughly! Anyway he hasn't replied.

But actually, I don't know what happens next. Maybe I was trying to find a "solution" previously as a way to make myself feel I was doing something useful? Perhaps part of the discomfort in all this is not knowing what will happen and not being able to control it?

It would be very hard for me to actively promote her going home this time, even though I know it's what she wants. Last time I supported it fully, and when the hospital asked my opinion I sent them an email detailing why I was in favour, but after seeing what a disaster it was, and knowing that she has deteriorated since then, I just can't bring myself to do that again. Hence my inertia I suppose. She is safe in hospital and I don't want to disturb the status quo.

I'm aware that there are some unclear boundaries here. In theory, since she is mentally competent it's nothing to do with me - she just says she wants to go home and the hospital/social services take it from there.

But she is very old and frail, and they do take relatives' opinions into account I believe. Also there is a history of psychological game-playing between my mother and me - she is manipulative, and traditionally I've dealt with her behaviour by avoiding it/her. So even staying engaged with this process is a struggle for me, knowing that she is pulling me in so that she can have someone else to blame when she doesn't like what happens - which she won't, whatever it is.

On a more practical note, we are going away for a week on Saturday so if there is anything I should/could be doing it needs to be in the next two days.

I've found it very hard to speak to anyone at the hospital - I expect this is normal as they are obviously extremely busy. In general when I ring the ward, after some time I speak to a nurse who says she is "comfortable". I then send a message to my mother that I have rung, since she can't come to the phone. So at least she knows I haven't abandoned her.

Should I try to speak to a doctor? When I saw her last week she looked terrible - in fact I thought she was dying. But evidently she improved when they sorted her hydration out. Should I be asking for a prognosis?

Sorry, this is long and a bit rambling. There is a mixture of "what would you do" and "what should I be doing" questions in there. Your opinion on any of this would be much appreciated.

Savvy_Sue

OK, I should be in bed myself, so this is a quick one, hopefully which may help you sleep.

When Dad was in hospital, we were able to speak to his doctor by phone and by appointment at the hospital outside visiting hours, so next time you ring the ward, I'd say that you would like to speak to the doctor overseeing your mother's care. What is their name, and would the doctor phone you, or would they prefer you to phone them, and if so when would be convenient? (You're not asking this as a favour, you're just saying that you'd like to do this, and how can they make it happen.)

Yes, you can ask for a prognosis, but that won't necessarily help much. Dad's doctor talked several times about making plans for his discharge, but whenever they did that he'd have a relapse. After a few weeks the doctor eventually said that because of the relapses it didn't look as if rehab would be appropriate. I can't remember if hospice care was mentioned or if a 'wait and see' approach was used.

Either way, when it was obvious that Dad was dying we had a bit of an argument about whether to re-insert a drip which he'd pulled out. Junior Doctor: "we can't give him any more antibiotics without it." Family: "he's been on antibiotics for six weeks and they haven't helped. He isn't going to get better. How will more antibiotics help?" Junior Doctor: "I shall have to speak to my registrar." Family: "please do that, but remember we are all here because we were told he might not last much longer."

You have to remember that doctors like to DO something rather than do nothing. And actually, we'd often like to do the same. But doing nothing is a perfectly acceptable option.

As for what you should do, be realistic about what you can do. If you can manage another visit before you go away, I'd want to do that, but you don't have to enter into great discussions about what your mother should do. You can tell her that she can make her own decisions, she should listen to what the doctors and social workers have to say, but that you can't help her if she goes home, and she should consider how much help her sister can give. You can perfectly validly make it clear to staff and social workers that it's your mother's decision where she goes on discharge, but that you are not on hand to give any practical support. (She may exaggerate the amount of family support she has, and in her own mind minimise the amount of help she needs.)

If it all gets too much talking to her then suggest you talk about something more cheerful, and let her listen to you.

Maybe doing something for her would help with a visit: my sister used to trim Dad's fingernails and give him a hand massage.

I said this would be quick ... oh dear!

nightsong

Thank you very much, Sue. Yes, that helps a lot.

Mojisola

nightsong wrote: »

I spoke to her on Sunday, and left things open - told her all options were still potentially available and it was her life and her choice.

I'm aware that there are some unclear boundaries here. In theory, since she is mentally competent it's nothing to do with me - she just says she wants to go home and the hospital/social services take it from there.

Also there is a history of psychological game-playing between my mother and me - she is manipulative, and traditionally I've dealt with her behaviour by avoiding it/her. So even staying engaged with this process is a struggle for me, knowing that she is pulling me in so that she can have someone else to blame when she doesn't like what happens - which she won't, whatever it is.

In the light of this kind of relationship, I would take a step back.

Make it clear to the social worker that you won't be able to take on any caring role for your mother so that where she goes and how she copes after the hospital will be a decision made between her and the SW/medical staff.

Tell your mother that she is in control of her future - her decision, not your fault if it goes wrong.

pmlindyloo

May I just add a few words?

The fact that you are not sleeping and worrying about this so much makes me wonder if, before you go on holiday, you should try to speak to the registrar/consultant. This might give you some peace of mind so you can enjoy your holiday a bit more. Let them know you are away but contactable and ask them what is going to happen during the week you are away. Are they going to reassess her etc etc?

Although I agree with all the posters that you need to step back a little and go away and enjoy your holiday this is easier said than done (which is why you are not sleeping well, maybe)

For your own peace of mind you need to know what the doctors are thinking. Are they keeping her in hospital and monitoring her medical condition? Do they have plans to start the discharge process etc etc.

Has she any family/friends (however distant) that you could ring and ask to visit while you are away. I found this a great comfort to know that she had visitors when I went away (lessoned the guilt of actually going away)

I know you have decided to physically 'step away' but that does not stop the constant whirring around in the head about 'what if?' or lessen the guilt.

Do your best to find out what is happening in the near future and then, at the very least, you can go away and be reassured that you have not left anything 'undone'.

nightsong

Thanks everyone

I've decided to be as proactive as possible today, with tomorrow left over for anything else that crops up, and then go away on Saturday and try not to think about it too much.

Her doctor and social worker were both unavailable this morning but I've left messages so hopefully they will get back to me.

The ward sister knows we are going away and has a mobile number for us.

I spoke to my aunt who saw her on Tuesday and said my mother didn't mention going back to her flat. She described her as comfortable and quiet. By the sound of this I think my mother may be coming to terms with her situation and becoming more realistic - I do hope so.

She has an infection atm so I guess going anywhere else is not currently on the agenda.

My aunt will visit her early next week and I will see her on Thursday.

So hopefully that's it for now. I won't be surprised if we are recalled from our holiday though. But who knows?

Thank you all so much for your invaluable advice. I felt the same last year when I posted about my son - so much help and support here, it's amazing.

margaretclare

But she is very old and frail, and they do take relatives' opinions into account I believe. Also there is a history of psychological game-playing between my mother and me - she is manipulative, and traditionally I've dealt with her behaviour by avoiding it/her. So even staying engaged with this process is a struggle for me, knowing that she is pulling me in so that she can have someone else to blame when she doesn't like what happens - which she won't, whatever it is.

This is interesting. On the Marriage & Family board on Martin's site, there have often been discussions about daughters of 'narcissistic' mothers, some of whom have had to literally step away, to avoid being manipulated and falling prey to this psychological game-playing. The fact that she is old, ill, frail etc etc but still has mental capacity means that she is not above continuing the game-playing right to her last breath.

I often observed over many years that people can lose the use of their limbs, everything you can imagine, but still keep this ability to manipulate. Some have even maintained their nasty vicious tongue even when they were incapable of doing anything else.

Go away on holiday. You need it, you've deserved it. She's in the best place. She's getting all the physical care she needs. Don't be too eager to say 'I'll come back if needed...' Once she knows that, she'll manufacture some pretext, you can bet your sweet life on it. She wants someone else to blame, at the same time as demanding the right to make her own decisions! But that's the whole point about making our own decisions - we can't blame anyone at all when it goes pear-shaped!

Very best wishes to you.

Errata

I won't be surprised if we are recalled from our holiday though.

To do what? There's nothing short of very imminent death that can't wait a few days.
Enjoy your break from it all, it may help to clear your head. Perhaps use the opportunity to write down all the pros can cons of everything - things seen in black and white often clarify matters.
Refuse to be manipulated by anyone, you have a choice. When my ma needed care at home the social worker was astonished when I told him I would do nothing for her (wasn't strictly true) but it put the ball firmly in his court and an adequate care package was rapidly created.

nightsong

Errata wrote: »

To do what? There's nothing short of very imminent death that can't wait a few days.
Enjoy your break from it all, it may help to clear your head. Perhaps use the opportunity to write down all the pros can cons of everything - things seen in black and white often clarify matters.
Refuse to be manipulated by anyone, you have a choice. When my ma needed care at home the social worker was astonished when I told him I would do nothing for her (wasn't strictly true) but it put the ball firmly in his court and an adequate care package was rapidly created.

To be with her while she dies. I don't entirely know, but think she may be quite poorly and very elderly people can go downhill fast. I'm not planing to come back unless we are summoned by the hospital - not by her.

You are right - if there is still a question of making decisions about where she goes, I need to stand firm and put the ball in her/social services' court. Thanks for the support.