Dilemma, Mum not well and refusing treatment.

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I write this with a heavy heart.
My mother has been under the weather the last 3 days and as I had persuaded her to have a change of pad for incontinence and then take her tablets, she had then got out of bed and walked to the sitting room until bedtime the last 2 days. She was alot better yesterday evening at bedtime.
This morning though, she refused change of pad, although I eventually managed, refused tablets and a drink and says she now wants to die and that this is what she is going to do.
Past history of stroke 7 years ago,Heart failure, rheumatoid and osteo arthritis etc.
Whenever Mum has not felt well, she states she is now going to die. Then when she gets antibiotics for an infection such as urine or chest infection, she recovers (But she has never stayed in bed)

I called the out of hours GP and because Mum said that she had pain all over, including her chest, they sent the paramedics out.
She has a slight temperature, possibly has a smelly urine pad, SATS only 81 (they were 87.7 3 weeks ago, but GP wasn't worried as lungs clear and she improved). Mum refused to go to hospital as as they said she has full capacity, they cannot do anything about it.
They said all they can do was to phone the GP on call to come out and see her.
The GP did come out, she said to the GP that she was staying in bed and going to die, he listened to her chest, managed to persuade her to sit up and me support her to give a specimen of urine, he tested it, it should infection and he gave me a prescription and told Mum that an infection would make her feel unell like this.
Mum told the Dr not to give me the prescription as she was not going to take medicine, or water fluid or anything.
The GP then spoke to me and said he cannot do anything else unfortunately. If she still didnt have a drink and take antibiotics then I could call the out of hours GP again tomorrow.
Mum told him that she doesn't want me looking after her anymore (she lives with me) she said it's too much for me and my husband and that's why she is choosing to die.
I then said to her that I didn't want her to die and was happy looking after her and that if she preferred, she could go to a care home, she said no, no way. I am staying here and this is where I want to die.
The GP said she is not dying but she will deteriorate if she doesn't drink or take antibiotics but maybe she might change her mind.
I feel Mum maybe has been observing me and I do get tired and irritable at times. I am often like that though when I am busy. But I do feel really really guilty.
I feel angry too. And all mixed up. I phoned my brother in desperation and he has come down from Nottingham to where we are in North Wales.
He said he accepts Mum's decision and it's her choice.
I cannot accept it like he can.

What might happen now? What can I do? Nothing I presume. I don't want Mum to die in my house like this. I could have accepted it better if she was ill physically, but mentally wishing it, I cannot understand.
Hi Christina,

I'm sorry but this is not something I have experience of as my caree is in his 20's. I have read of other elderly carees giving up though, on the forum. You must be so worried.

All I can think of is perhaps your husband could talk to your Mum and explain how upset and worried you are.

I would be concerned that her untreated UTI is affecting her capacity as they can cause confusion and unusual behaviour and this will only get worse the longer it goes untreated, you could raise this during the next GP visit.

Try and persuade her to at least take her usual painkillers as not moving about will aggravate her arthritic joints further and being in pain makes you look at life in a more negative light.

Sending you cyber ((((hugs.))))

Melly1
Thank you for your reply Melly.

Yes, my concern is that too. But, she is still refusing her paracetamol painkillers, and I did manage to persuade her to take half of her liquid antibiotics, but she said She doesn't want them again.

One of the Careworkers came in late afternoon and also tried to persuade Mum to have a drink or medicine and this Careworker who is in charge of her own agency and is very good, couldn't persuade her.
She also couldn't get her to have a wash and wouldn't let her change her pad.

She refuses for me to wash between her legs, and crys when I tried to touch her.
I feel I am neglecting her as she won't let me do anything for her.

I feel I am now left on my own all night, whilst if someone who is admitted to hospital will get 24 hour nursing care, and change of shifts so that they can rest.
Sadly, if mum continues like this then calling an ambulance and admission to hospital will be the only option left, very soon. I know that under some circumstances Social Services can make "Best Interest" decisions, if no one has Power of Attorney - do you have POA?
Whatever happens, you have clearly been the very best kind of daughter and carer. Do not for one minute blame yourself for what is happening. Mum has been so lucky to have you.
How would you feel if she was now admitted to a nursing home?
Hi Bowlingbun, thank you for your reply.

When I first phoned the GP out of hours this morning, they called the paramedics and suggested that Mum went into hospital and she refused.
They asked if she had mental capacity and I said most of the time, maybe, but she does have loss of memory since her stroke and when she is ill, she wants to die, but never says it when she is well.
She also refused to have the oxygen mask on as her SATS were low at 81.
The paramedics said they believed that she did have capacity as her requests to stay put were becoming clearer and not sounding confused. They said that they could do nothing more and they would phone the on call GP out.
The GP listened to Mum say that she didn't want me to look after her any more as she was a burden to my husband and I, I said she was not a burden, I then said that if she preferred she could choose to be looked after in a care home. She said no way was she going to a care home and she wanted to stay in this bed and die.
My brother has POA and he has come down from Nottingham, he does say my mother can choose what she wants (he is less emotionally involved)
Actually I don't want my mother to deteriorate and die in my home, I would rather she was in a hospital or Nursing home. She just wants to stay in her bed, but doesn;t want me to do anything for her and I feel useless and not caring and feel she is suffering quietly. I feel mean though, but I will suggest that to my brother tomorrow morning when my brother comes back to our house.
My granddaughter aged 10 also lives with us, so I am trying to discuss things away from her hearing.
christina 17 wrote:Past history of stroke 7 years ago,Heart failure, rheumatoid and osteo arthritis etc.... Mum refused to go to hospital as as they said she has full capacity, they cannot do anything about it.

Mum told the Dr not to give me the prescription as she was not going to take medicine, or water fluid or anything.
The GP then spoke to me and said he cannot do anything else unfortunately... She is choosing to die.
I then said to her that I didn't want her to die and was happy looking after her and that if she preferred, she could go to a care home, she said no, no way. I am staying here and this is where I want to die.
... I don't want Mum to die in my house like this. I could have accepted it better if she was ill physically, but mentally wishing it, I cannot understand.
Hi Christina,

I'm sorry about what you're going through, it is so difficult when elderly parents give up. Reading your posts I gather your mother is 89 and has quite a few health problems. Looking at your final sentence above, I think maybe you're in a little bit of denial about your mother's health, because she seems to have all sorts of physical health issues. Try to see things from her perspective - she has heart problems, is pretty frail and her aches and pains mean that she takes 2 hours to get moving each morning. That doesn't sound like good health to me. Add incontinence into the mix and it must be pretty dire for her when she knows she needs her pad changing, but takes an age to get to the toilet and finds assistance from you intolerable. Maybe she's just had enough and is ready to leave this world? Maybe if I was in a similar position I'd feel the same. I'm sorry if that is too much to bear, but maybe you need to accept the way things are and just try to make your mother comfortable, if she is set on this course.

I see echoes of my mother's attitude in your posts (read my other threads for more info). Mum slowly lost the will to live and over the course of several months she wasted away, until she eventually passed away in January. She was 88 and weighed less than 5 stone at the end. It was horrible to witness but I tell you this to warn you that this process could take weeks or even months depending on how much your mother weighs and whether she takes fluids or not. On the other hand, as your mother has heart problems the end may come quicker for her.

I had months to prepare myself mentally for Mum's death, but the truth is that no matter how much time is given, it can never be enough to prepare for losing a parent, even if they are elderly and in poor health. We cling on, we can't help ourselves, and sometimes we can't face the fact that they're letting go.

Try to get the local district nursing team involved - they can be very helpful and caring and should be able to offer you lots of support. Also, maybe you could forget about drugs and just offer your mother some of her favourite food/drink - does she have any favourite sweets/chocolates/cakes that could perhaps tempt her? Better for her to have small treats that she enjoys, than battle with her to take medication etc.

I know what you're going through, and understand the angst that you feel. It's bloody hard but please don't feel any guilt, you haven't failed your Mum, you've done your best for her, but sadly the time comes when your best isn't enough to fight the ravages of old age in a parent. It's a bit like King Canute trying to turn back the tide - it just can't be done. Be kind to yourself and try to think of ways to make your Mum comfortable, that is the most important thing now.
Your brother needs to listen to you, especially your wish that mum does not die in your home.
Could you tell him that he now has a duty to exercise his POA by getting mum moved to a nursing home?
Does he realise that you have absolutely no legal responsibility towards mum, HE DOES. (When did he last have mum to stay?!)
Point out that you do NOT have to care for mum, and you now wish to exercise your own right to have your life back.
Set a definite time scale, that he comes back to you with a definite plan of action in 48 hours, because mum will be going downhill fast without hydration.
In other words, tell him to climb down off the fence, grow some ... and do something, fast.
(I'm Grumpy guts tonight, so sorry if this is blunt; but I suffered from useless brothers for years. Is your brother actually reluctant to do anything about residential care because it's going to reduce his inheritance?
Just my thoughts, nothing more...

If your mum feels she wants her life to draw to its close, is it for anyone else to object? I've always thought that the phrase 'to take one's own life' does mean exactly that - we take our OWN life and do with it what we feel is the right thing to do. Surely that is our ultimate 'free will'?

And surely, by that token, it would be a kindness to let her pass from this life in your home, where she has lived, rather than in a hospital or nursing home, if that can be at all avoided?

Wouldn't we all prefer to die 'at home'? My husband did, and I was so, so grateful that it happened that way - for his sake, for ours.

Yes, we are protective of those we love dearly, and that is right and proper, but sometimes there comes a point where we have to listen to them, to do what THEY want, not what WE want. We should surely grant them the respect of believing what they say, not thinking that 'oh, they can't mean that!'....

When we are nearing the end of our lives, our perspectives may change. I would never, ever, in a million million years have 'wanted' my husband to die - but by the time his death came (from cancer) it would have been selfish to 'hold him back', so stricken in body as he was.

I dont' know if your mum has reached that stage yet, but if she has, does she not get 'the choice', if at all possible, of when, and where, to leave this life?

As I say, just my thoughts, just my thoughts....

In terms of fluid intake, water alone cannot keep us alive, but dying 'in thirst' surely cannot be kind. When my husband was very near the end, he lost, as his hospice-at-home nurse warned he would, the swallowing reflex, and so fluids had to be withdrawn or he might choke to death. We kept his mouth moist, and as comfortable as we could.

It was not easy, to see him leave this world, but sometimes we, the living, have to stand aside, and let nature take its course.

Wishing you as well as possible, at this most distressing and emotional time for you, Jenny
Fair point, BB. My post was more along the lines of acceptance, but that doesn't rule out a nursing home.

Maybe the brother was given POA as he is less emotional/more objective? Maybe that is why he finds it easier to accept his mother's decision? But even if that is the case, nobody can be forced to take care of a dying parent in their own home. Also, nursing homes have 24/7 staff on hand, which gives peace of mind in these difficult circumstances.
PS - Jenny, my post crossed with yours. Fair point, but maybe Christine can't face having the deathbed scenes play out in her own home, over the course of weeks/months? Maybe Christine would find that too overwhelming? I found it hard enough visiting Mum in the nursing home, where I always felt the grim reaper was stalking the place (many patients were there for end of life care), but at least I had some respite from the situation when I went home.