Dilemma, Mum not well and refusing treatment.

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Thankyou all for your replies.
I do value all you have said and from your experiences.

My brother was given POA as being the only male in the family (I have 2 sisters, one of them is in Australia) The other lives an hour away,( not very well at the moment) and she has great difficulty making any decisions anyway or advice to help.

My heart and mind is split whether I can tolerate her dying at home, I feel I will be too frightened, unless I have someone with me all the time.
I shall ask the GP for community nurses to come in, I did yesterday ask the GP but he said if Mum still not taking fluids, then phone the on call duty Dr today.
My mother said she doesn't want to move from her bed and our house.
My husband said what about him and our granddaughter (age nearly 11, she just thinks Great grandma is tired and doesn't feel like getting up today.
I shall also put my views to my brother, but I feel that he too couldn't cope himself with looking after Mum. But he has wanted the best for her, providing I have been able to cope.

Since Mum came to my house two and a half years ago, it all seemed fine, but as time went on and Mum struggling more, I found it more difficult and have carers in twice a day. Especially as my husband has thought I should carry on and not stop the rest of my life, But we have had to give up alot. I was just thinking a few days ago that its all getting too difficult for me and I would like Mum to go to a care home.
Now I feel that she must have read my thoughts, or maybe just co incidence, that she has thought to no longer continue with her life.
I did think a few days ago that she looks worn out, but hopefully she may pick up, but also not so sure.
I feel I am rambling on now.
I changed Mum's wet pads twice in the night and for the first time, she let me wash her bottom each time, in the last 24 hours.
She refused a drink and I had forgotten that she might lose her swallowing reflux, so maybe I should try and get community support as soon as possible.
Than you so much all for your advice and support, I welcome all views.
Christina - this might sound odd but 'dying is a specialist art'. It's a very, very strange experience to witness, and of course incredibly emotional. We all of us want 'a good death' - it's something that is almost ingrained in us I would say. None of us knows how it will happen - or even when.

When my husband went into 'end-stage' of cancer, where we knew death was 'imminent' (it took three weeks in the end from collapse to the very end), my GP and the nurses (a mix of community and local hospice-at-home nurses, like Marie Curie but more local) all told me that he might last five days, or five weeks, or even five months - it's very, very difficult to predict absolutely.

So I do agree with She-Wolf that having your mum at home while this last drama of her life plays out may just be too, too unbearable for you. In that case, would you consider hospice care for her, if that's available? Hospices are focussed so completely on granting the terminally ill 'a good death' that they can be very, very supportive places, with fantastic nursing teams. That said, of course residential homes for the elderly can also be, of necessity, places where end-of-life care is exceptionally tailored to their residents' needs and way of dying.

We all react differently to the thought of death, or witnessing someone dying. Like I say, it's a very 'strange' experience, and one which we in our modern lives usually have very, very little experience of, unlike, say, in Victorian times when death in the family was as common as having meals justabout.

What I found really, really helpful when my husband was in End stage at home (I got him out of hospital and brought him home) was talking through with the nurses just how 'the end would come'. (This is when they told me about the eventual loss, about a day or so before death occurs, of the swallowing reflex.) I found knowing what I was likely to expect extremely helpful.

Like you, I was scared that it would 'happen' without a nurse there, or worse, when I wasn't in the room. But in the end it happened in a way that was really quite predictable, and we had sufficient warning to phone the nurse to come early that morning, and indeed, he passed away about an hour after she had arrived, and was there to 'hold our hand' through it.

For others it happens differently. It can be, for example, extremely common for someone to 'slip away' when they are alone. It happens time and time again, and nurses will say it's extremely familiar - family will just have visited, or be out of the room, or asleep in the night, and the person almost 'chooses' to take that opportunity to leave. As if they want to cause no trouble.....

With all of that said, I do, do, do appreciate that this time ahead for you, if your mother really is entering the final phase of her life now, is going to be extremely, extremely hard and emotionally distressing and just plain heartbreaking. If you feel that you could not bear the trauma (and it IS traumatic.....) happening in your home, if you feel the memories thereafter would be too too painful for you, then tell your mum, and have her moved to somewhere like a hospice. Surely she would want to do her best for you, her daughter?

Again, all that said, I am also sparing a thought for the speculation that maybe, you know, she's only 'talking about dying' because she wants to go on living with you anyway??? Only a thought, and please shoot it down if you think it unfair!!!

Wishing you as well as can be possible at such a time as this. We go, I feel, into a 'different place' when we have to face the death of someone we love. It changes the inside of our heads. Making a good death, saying 'goodbye' to the person we lose, is of immense emotional importance to us. We may get it right, we may get it wrong, but I feel, personally, very strongly, that is we 'do our best' then we have done enough, and all that can be asked of us.

With kindest wishes at such a time, Jenny
Following my comment above, when the Carer came she accepted a cup of coffee from her and her antibiotics.

I was shocked.
I know that she may refuse again.

I suppose I will have to come to terms that her wish to stay in bed may continue and she may fluctuate in her wish for fluid and diet.

Do I give up my 3 days baby sitting and 2 days work?
I know that my son and partner cannot afford child care. They are on just on an adequate wage with little to spare and don't want strangers to look after their pre school children I will be dropping to one day a week baby sitting in July when they have their 3rd child and son's partner will be having a year off work.
My husband was keen that I keep my 2 day job, which I enjoy, but I wonder if it's worth it if I get tired with it all as I do quite often.
We are also being vetted by social services to see if we can adequately look after our nearly 11-year-old granddaughter (Her Mum, our daughter has mental health problems, daughter doesn't live with us, just the granddaughter.)
The fostering social worker will be coming to our house to interview us once or twice a week for 8 weeks.
We are happy looking after our granddaughter as we have done so on and off since she was born and there is no other family member able to do it.

Alot for me to think about.
Any further advice is always welcome.
Thank you Jenny for your last reply.

I used to be a nurse up to 15 years ago and have sat with many patients giving them comfort whilst they were dying. But as I left nursing due to becoming over anxious, trying to deal with looking after Mum from a distance 50 miles away in her home and also looking after daughter with mental health problems, I feel I have lost the ability to cope in the instance of someone dying.

But, if it were my husband, I know I would like to look after him, I feel certain, in our own home.

I have thought that I shall phone Mum's social worker tomorrow and discuss with her either arranging back up nurses at home or going into a care home, which Mum won't want really. But I also have to think of myself maybe.
I know I will feel guilty about her going into a care home again, but when she came out of 2 weeks respite, she seemed fairly content - but she did know that she was coming home again.
Mum has improved since yesterday morning.

She had a drink of coffee from the careworker, then a drink later from me, took her newly prescribed antibiotics for a urine infection and asked to be taken to her chair in the sitting room.
She is not talking anymore of dying and has eaten light meals and some drinks and taking her other normal medication.
She does look exhausted and sleeping alot in between her food today.

I spoke to the social worker about my not wanting to look after my mother if she deteriorates again (The care workers who have known Mum for two and half years, do see a big change in her in the last 2 weeks or so) and the social worker said that as Mum has mostly full mental capacity, she cannot be forced to go into a care home, or hospice or hospital, or nursing home if she refuses as she has done. Even though she is living in my home (my mother still has an empty home 50 miles away.

She has said we would need to get in private nursing care, if I had difficulty looking after her.
My brother agrees, so maybe I should ask my brother to move into my house, which he won't, but maybe I should say that I am handing over my mother's care to him
I still have to live in my house though.
Maybe now she's feeling physically better, she can let go of her thoughts of dying?
Again, being cynical, is it because she's 'seen off' any 'threat' for her to have to go into a home/hospital??

It's obviously very good that you know professionally so much about the strange process of dying, but it sounds like when it comes to your own family, then all the 'professional knowledge' in the world can't really help alas. When our own emotions kick in, it's so, so different.....

In terms of your mum's refusal to go into a care home, and having full mental capacity, yes, well, that may be true, but it's also true that you have NO legal obligation to look after her! That said, it sounds like you'd actually have to evict her! It can be done, but it won't be pleasant.

That's rather why I was thinking maybe all her talk if 'dying' was a means to get to see that threat off!!

You do rather seem to have been a victim of 'pass the parcel' when it comes to 'who gets to look after mum' by you and your bro. Could you go and live in your mum's house, by the way? Is that an option? And you just phone your bro, hand him your keys, etc.....

If you sat down and asked yourself - What do I myself want? Do I want to STOP having mum in my house, and she goes 'somewhere else'.....then that is the only question now that needs to be addressed.

I sort of suspect that maybe, you know, if you said to your mum: 'Mum, now that you're feeling better, and don't thing you're about to die after all, it's time to think about you going into a home as I really am at the end of my tether'. Do you think she might suddenly decide she's dying after all????

Apologies if I'm being very mean here!
I'm glad your mum is feeling a bit better now Christina, from what you've described, she seemed delirious from the UTI, and still trying to recover from it. If she doesnt take her antibiotics and gets confused/stubborn again then I'd bypass the GP and ring an ambulance.
Hi Jenny and Frito

Every time mum gets an infection, she says 'now I am going to die' I have had a good life and no longer want to be a burden'
But this time, on Sunday, I phoned GP and they phoned the paramedics and ambulance came too.
She refused oxygen mask for her low SATS oxygen rate, she refused to be allowed to be taken to the hospital as she told them she wanted to die in her bed.
The paramedics said that she mostly seemed to be of sound mind, unless she had a diagnosis of dementia.
She had been referred two and a half years ago to see if she had vascular dementia but refused to attend appointment. She does have some degree of memory loss, cannot say what her name is and doesn't know my name, but can say daughter, to anyone who asks.
The paramedics said that they could not do any more for her as she refused treatment and they would phone the on call GP. When he came, she said she would not take the antibiotics, but she did the next day and has done since.

I wonder if, as you suggest Jenny, that she is testing whether I might send her into a home/hospital.
She never forgave me for 'putting her in a hospital' last year when I called the paramedics out when she was very breathless (SATS again were low)
I have now told the rest of the family that I am now prepared to carry on looking after Mum, It stressed me too much when she wouldn't let me help her, I felt guilty when she asked me to leave her to die and I was not to do anything for her, even change her very wet pads.
I am hopsing that brother discusses about me not coping very well and the care home option, with Mum when he next comes to visit in 2/3 weeks time.
I have visited a few care homes over the last few moths and Mum has had respie for one week on November and 2 weeks respite 2 weeks ago, she wasn't happy each time she went, but seemed content when she was there, but knew she was coming back home, to my house and care.
She does say very little though.

And yes, Jenny, I do think that if a care home was mentioned, she would think that maybe it is time to want to die again.
Mum felt ill and had a slightly raised temperature on the day she was due to go to the 2 weeks respite, 4 weeks ago, I cancelled her going that day, got the GP in, he said maybe just a virus, she was improved and up early the next day and the day after when she was due to go to the care home again, she felt ill again, but social worker and care home said send her anyway.
She really was ok in the care home for the 2 weeks.
Christina
Hmm, it does sound, you know, like there is a fair amount of 'playing up' (manipulation?!) going on here, even if it's not being done consciously or deliberately. All this 'getting ill' when respite looms, and the 'wanting to die' in order to 'avoid' being sent into a care home, do rather start to point in that direction, when you list them all in one post!!

I would say that maybe a family discussion on 'What's best to do about Mum until 'The End' finally comes?' would be timely now. You sound, even if you're coping, pretty 'stressed out' by it all. I hope your family is both sympathetic and HIGHLY APPRECIATIVE of what you're doing, day in, day out, day in, day out......!

Would it help you feel more 'in control' (rather than just 'firefighting' or 'reactive', which is not a good situation to be in!), if you set out a 'Six Month's Plan' (or even 'Annual Plan', or 'Plant till Xmas 2016) in respect of your mum, setting out the various options.

One of the things I have found MOST 'trying' in being the carer for a very elderly person (my 91 MIL with dementia) is NOT being 'in control' of the situation. THEY are - and it's intensely frustrating. They may not mean to be in control, but they are! So I think, mentally, trying to regain at least sufficient control to not be driven nuts by the stress (I was!) of having to put one's entire life 'on hold' and know that that 'on hold' will, grimly, only end when the caree dies (which is a pretty horrible thing to think, even though its sadly true!), does help us cope long term. (My 'in control' came when I made the decision NOT to rent a flat near me for my MIL, but to use the same amount of money for a place for her in an Abbeyfield - she wasn't happy, not at all, but I got my life and sanity back knowing that finally there was 'someone else' - ie, the Abbeyfield staff - to look after her)(she came to me for sleepovers twice weekly and I dedicated those two/three days to her exclusively, but the rest of the week was mine all mine!)

It does sound from what you say that respite works well for her and you, in that she is well looked after there, AND you get vital breaks and 're-charge' time.

I really wouldn't worry about her not wanting to go in! It's so, so common on this forum, but we have to think of them as what I call 'elder toddlers', and just as toddlers may well not want to go to nursery, yet, well, that's what they have to do!

To my mind, the very elderly having regular respite stays, in order for their family to get essential breaks, is simply part of the 'deal' of being able to 'see out one's days' 'at home' (as your mum repeatedly wishes to do!).

I'm glad that the last time she 'played up' (if that's not too unking, and I don't mean she does it deliberately!) about respite, in she went all the same!!!!

I often read on this forum that some carers are quite blunt (because they have to be!) about 'the deal' - and tell their carees frankly 'Unless I get regular breaks by you having respite stays, I CANNOT go on looking after you, and you will have to go into a Care Home full time! So, accept respite stays, or rest-of-your-life stays!'

All the best, and hope you can find the balance for you that works.
Christina,

Your mother sounds quite manipulative and brings to mind the term "drama llama". All this stuff about wanting to die at home, in her own bed... except that she's not in HER own home, she's in YOURS, and you cannot be forced to keep her there. Maybe you should remind her of that fact when she's being difficult, refusing respite care. Let her know that although you care for her, she cannot have things all her own way if she wants to continue living in YOUR home.

If your brother is less than useful, maybe try making a visit to him, with your mother, and LEAVE her there! :twisted: Not forever, just a few hours or a day or two should be enough to make him realise how tough things are for you and how bad things could be for him, if you were to leave her there permanently. I suspect he'd then be a lot more firm with her and back you up more.