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

nightsong

whitewing wrote: »

Firstly, I can't remember commenting on a thread about a disabled son, so anything I posted on this thread is completely outside of any other thread of yours. Yours is a userid that I don't really remember as you don't seem to frequent the same threads I do, so I have no picture built up in my mind of your circumstances.

I don't think you 'should' be doing more. I just think (given friends I know in similar situations of having elderly parents that live a long way from them) that one solution would be to have her move nearer you so that you are not having to travel so far to deal with anything, and that you could make more frequent visits that are shorter that may be easier to fit in your life. This is what my friends have done very successfully.

I don't understand why I would have an 'agenda'. I am simply commenting on a small piece of information, without pretending to know you or your circumstances, and without having looked at other threads of yours recently.

In November last year I started a thread called "Disabled son - I can't cope"

You posted this on the thread -

Should he/could he move back in with you?

NB - note the word "should".

Nobody else on that thread made this suggestion. I imagine they understood that someone in my position would already have considered that, and that if they felt unable to have their disabled son living at home with them they may well have experienced much guilt and heartache over the decision. Therefore it was unhelpful at best, and insensitive/cruel at worst, to suggest such a thing.

Earlier in this current thread you posted -

Is there any way that she could stay at yours but with her own carers?

See my comments above, which also apply to an elderly parent.

and now we have -

Would she go into a home nearer you?

Do you really suppose I haven't considered these ideas? I find your suggestions unhelpful and hurtful, and yes I think they suggest you have an agenda - maybe unconscious, but if not, why have you now suggested three times to me that I should be taking far more responsibility for my family members, when nobody else has mentioned such a thing?

As I say, I don't suggest that you are being deliberately unkind, but you might consider the effect your words could have on someone who is already struggling with the guilt caused by NOT having their disabled or elderly relatives living with them.

It must have been clear from my last post to you that I was upset by your comments. Perhaps a simple "Sorry, I didn't mean to annoy you" would have been nice? Rather than justifying yourself so defensively?

I don't know if there is a "block" facility on here but I'm going to find out as I don't wish to be upset by any more of your posts.


To the other posters on this thread, thank you very much for taking the time to post. I have gained much comfort and also useful information from what you've said.

Edit - I found the "ignore" facility

whitewing

Yes, I did actually think that you hadn't considered those ideas - that is why I suggested them.

LL30

I guess what the law does is put the person at the centre of the decision making. This admittedly does have pros and cons, but historically there was a lean towards a paternalistic 'you're old/disabled/have mental health issues, we want to keep you safe and we know better than you' attitude, which resulted in a gross abuse of people's liberty. The Mental Capacity Act is not without it's flaws, but is explicit that capacity must be assumed unless it is proved otherwise and that we all have the choice to make unwise decisions, so long as we can weigh up the risks of those decisions.

I understand how difficult this is for families, I work with it everyday, and it's not always easy for professionals either, but I am a firm believer in supporting choice and encouraging positive risk taking. Ultimately families are (usually) driven by love, and a desire to protect, which is a natural instinct, but sometimes the individual's right to autonomy can be compromised by this. The Act serves to try and safeguard against this, and makes an emotive decision a legal one.

I think having an open conversation with your Mother about your fears and feelings is a brave, but wonderful idea. I wish you luck x

longforgotten

I've read through all the posts and I really sympathise with the OP.


To the OP I would say if my Mum was 93 and she wanted to be at home then I would have to accept her doing so if the powers that be said that they thought it was ok, with the care pack in place etc .etc. If she passes away when she gets home, well she's had a good innings, died where she wanted to be and you did all you could to make sure care was in place. I know you are concerned that she will have a painful death on her own so perhaps someone on here can advise as to whether that's likely if she should die from breathing difficulties or if she'll just slip away.


Personally if I get to your Mums age and had the problems you have described I would like to pass onto pastures new , and I don't mean a nursing home, indeed it is my intentions to help myself on my way if needs be

nightsong

LL30 and longforgotten, thank you both. I completely agree with both of you.

To be honest I have been hoping for some months now, that she might just go to sleep one night and not wake up. That's such a gentle and kind way to go. Her quality of life is pretty low, she is anxious and depressed, and there is only further deterioration to look forward to.

My aunt visited my mother yesterday and found her once more talking about going home. My aunt told her very bluntly that she was not fit to cope at home. I hope this has had some effect.

The social worker at the hospital will be in tomorrow - think I might try explaining my concerns to him. I will also make clear that I understand and support her right to be self-determining. Hopefully that might help to move things along a bit.

nightsong

OK, another question if anyone would be so kind -

What is the maximum amount of care my mother could potentially receive at home?

The care package she had last time was two carers, four times a day. Two visits of 30 minutes and two of 45 minutes.

Is that the most she would be entitled to, or could there be more?

By the way she lives in a studio flat, so there's no realistic possibility that I can see of anyone staying there overnight.

Savvy_Sue

I think it's extremely unusual to get more than four visits a day. However, if your mother was in a position to pay for her own care then she could have whatever she wanted.

LL30

2 carers four times a day is pretty much the maximum in my area. We would add extra time for domestic tasks if needed, so the plan might read 4 x calls x 2 carers plus 45 mins domestic call weekly - but effectively the carers would usually add the domestic time onto the existing calls.

We have additional assistive technologies also, such as 24 hr response, bed sensors, falls sensors, exit sensors but I'm not sure how relevant these would be for your Mum as she's bed bound. The safest of my service users are those who are bed bound, as, generally, it reduces the risks, but I think with your Mother they need to determine the risks with regards to her breathing. There are actual risks, and perceived risks, and the social worker will need to assess this. They'll look at how often her breathing compromised and how her sats are affected, how she communicates that her breathing is compromised, what action and how quickly that action has to take place in order to rectify the situation etc.

I think they key to all this is to take your wants and wishes out of this, as ultimately this isn't about you, it's about your Mum and what you might feel is not tolerable, may be for your Mum. That sounds very harsh, and probably just about impossible, but the social worker will want to see that you have your Mum's best interests at heart, opposed to what you can or can't live with. Unfortunately one of the most said phrases that I hear is 'I couldn't live with myself if....' and I have to gently explain that this isn't about them, but about the service user and their right to make decisions about their own lives.

It's not uncommon for relatives to wish their loved ones would slip away quietly one night, and then they often feel awfully guilty for even thinking it. I'm afraid modern medicine, as wonderful as it is, has a lot to answer for.

nightsong

Savvy_Sue wrote: »

I think it's extremely unusual to get more than four visits a day. However, if your mother was in a position to pay for her own care then she could have whatever she wanted.

Thank you that's helpful. So I guess there may be an implication, that if she can't cope on four visits a day she may not be suitably placed back at home.

nightsong

LL30 wrote: »

2 carers four times a day is pretty much the maximum in my area. We would add extra time for domestic tasks if needed, so the plan might read 4 x calls x 2 carers plus 45 mins domestic call weekly - but effectively the carers would usually add the domestic time onto the existing calls.

We have additional assistive technologies also, such as 24 hr response, bed sensors, falls sensors, exit sensors but I'm not sure how relevant these would be for your Mum as she's bed bound. The safest of my service users are those who are bed bound, as, generally, it reduces the risks, but I think with your Mother they need to determine the risks with regards to her breathing. There are actual risks, and perceived risks, and the social worker will need to assess this. They'll look at how often her breathing compromised and how her sats are affected, how she communicates that her breathing is compromised, what action and how quickly that action has to take place in order to rectify the situation etc.

I think they key to all this is to take your wants and wishes out of this, as ultimately this isn't about you, it's about your Mum and what you might feel is not tolerable, may be for your Mum. That sounds very harsh, and probably just about impossible, but the social worker will want to see that you have your Mum's best interests at heart, opposed to what you can or can't live with. Unfortunately one of the most said phrases that I hear is 'I couldn't live with myself if....' and I have to gently explain that this isn't about them, but about the service user and their right to make decisions about their own lives.

It's not uncommon for relatives to wish their loved ones would slip away quietly one night, and then they often feel awfully guilty for even thinking it. I'm afraid modern medicine, as wonderful as it is, has a lot to answer for.

Brilliant, thank you.

Her breathing is the crux of the matter so I will focus on that. Your comments are very helpful.

As for taking my emotions out of this - it is hard, but you are absolutely right. But it would be so much easier if I thought she was trying to get home because she had a realistic view of the risks, but chose to take them anyway. In fact she belives everything is going to be perfectly fine, and then is going to get panicked the minute something goes wrong and then be desperate to get back to hospital.

Still, we are getting to a point where I should step back and let her decide, and then just deal with my stuff if it goes wrong. Ugh.