Misery of being unable to help

So many people who are in or have been in similar situations.Katyj that sounds terrible, you were right to refuse to shoulder that responsibility. We need to deal with end of life far better, and probably in a more pro.actve way in this country.There were six people in the Acute Frailty ward, all in the same dire straits as my Mum. Extrapolate that out over all the hospitals and what a terribly sad burden of suffering on those people and those who care for them

Hi I’ve only just seen this thread . Just want to send my wholehearted sympathy to you both. We’re in much the same position, only my mum lives alone, and it’s taking an army to look after her. After mums last three admissions for two heart attacks and a fall the Dr has suggested we keep liquid morphine at home to administer if she has another heart attack. which may in his words keep her out of hospital. Suppose he means she may die before she gets there ! I’ve declined the offer as it would be me that had to give her it and therefore monitor the situation, and quite frankly I don’t feel up to it.
Hope things become easier very soon.

Ohhhh I absolutely feel for you, I really do. It is heartbreaking I know. There is nothing that can be done but just be there for your lovely mum.

I have been in a situation with my precious mum, feeling beyond helpless BUT I know that just being with her, no matter how much it hurt me and made me so sad, was comfort for her in her great time of need.

I am sorry you and your precious mum are going through this ... x

It’s so hard Nanna58 I hope you and your Mum have a peaceful closure soon. x

Nanna58 I hope your mum has a gentle end to her journey very soon and you can say your goodbyes in peace.

My Mum had Alzheimer's, was at home being looked after by Dad and carers, and had been refusing food and drink.
One weekend she was very weak, collapsing when two carers tried to walk her to the toilet, and was dehydrated.
Her GP said she could be admitted to hospital and put on a drip, but this would only give her another three weeks.
It would have meant strapping her to a stretcher, carrying her downstairs, into an ambulance, into hospital, strangers, needles and cannulas. She'd have been traumatised.
Dad was adamant he wanted to keep her at home. The GP agreed but warned that Mum would be dead by the weekend.
We all said it was Dad's decision but we all supported him.
The GP, district nurses and carers came every day.
My Mum died peacefully a few days later, in her own bed at home. She'd reached the end of her journey and it was her time to go.
I have no regrets, and am very thankful for an understanding and supportive GP who let Dad decide what was best for his wife of 65 years.

icanhandthemback

Anybody who works with the elderly towards the end of their life knows that they very often lose their appetites and wanting to hydrate as their bodies shut down. It is not wilful, it is a very natural part of the process. Animals often do this instinctively and hide away to end their lives. As humans we often try to override instinct as part of the medical process.

Very true.

I hope you find strength and your dear mum finds peace
I believe in euthanasia in cases such as yours Nanna58.
I hope one day it will be lawful.

Just didn't want to walk by..
Thinking of you and wishing you strength and your mum, peace.

Teacheanne, by a certain stage I had agreed with the care home that unless it was absolutely necessary, e.g. a 2nd broken hip, then there should be no hospital for my mother - already over 90 with advanced dementia - and no life-saving or life-prolonging treatment - palliative care only.

Thank goodness the question never arose - she went downhill very suddenly and died within 36 hours - at 97.

Hospital is in any case a terrible place for anyone with dementia, when they can’t understand what is going on or why.

An aunt of mine, mid 80s and also in a care home with dementia, started refusing food and drink during her umpteenth UTI. I was asked whether we wanted her taken to hospital for ABs/drips, or left where she was, where they’d keep her comfortable, but where she was going to die.

It was a horrible decision - I could only ask the lovely GP what he’d do if it were his much loved aunt. He said he’d leave her where she was - it was only going to happen again, probably quite soon (she was prone to UTIs)

She drifted away quite peacefully after about a week - I sat with her a lot and saw how she closed her mouth and turned her head away whenever the lovely staff tried to offer food or drink.

I never regretted it afterwards - if she’d been able to speak for herself, I’m sure it’s what she’d have wanted.

So close to your dilemma as having had problems similar with parents but now considering future for myself and dh. Take care of yourself. It will not last much longer.

Witzend

I agree with MissAdventure. Please don’t be afraid of telling the medics that you mum would ask for palliative care only. From all I’ve ever heard, they may often be afraid to suggest it, because some people do get very upset or angry at the mere idea - they want everything possible done to keep someone going, no matter how pitiful the state they’re in.

All these comments are very true.Your Mother is more than ready to go, poor lady.
You need to have a serious discussion with her GP about this.
I wish that people were made as comfortable as humanly possible and allowed to die at the right time.
Not by withholding liquids from them as sometimes happens and is cruel, but by morphine means.It is the kinder way.

Nanna58, such a sad time for you and your DM. Hoping and praying for strength for you and peace for your dear Mum.??

Nanna58 I am so sorry you are going through this. My dad asked me if it was okay to die. I told him it was up to him. He was sent home from the hospital to the care home and he died 2 weeks later. He was always a control freak right up until the end.
I am so sorry your mother is suffering. My mum had dementia but at the end she was without pain and went peacefully.

Anybody who works with the elderly towards the end of their life knows that they very often lose their appetites and wanting to hydrate as their bodies shut down. It is not wilful, it is a very natural part of the process. Animals often do this instinctively and hide away to end their lives. As humans we often try to override instinct as part of the medical process.

I have also experienced hours of waiting in A&E with an elderly mum with dementia - my record is 13 hours! She was only supposed to be there to have an x ray of her hip as the district nurse was concerned about a lump but it was as if she was held hostage for a week!

We had already agreed with her GP and care home staff that she would no go to hospital again as mum was in a cycle of refusing to eat or drink, getting dehydrated and infections needing IV antibiotics and fluids, improving slightly, going back to her care home only to refuse to drink again!

Every time she went in hospital, she acquired bed sores through not being turned or helped out of bed and became fully incontinent as she was not taken to the bathroom. The last time I got so stroppy with the medical staff about their refusal to discharge her despite the letter on her medical records about no more treatment and desire for end of life care in the care home that I was banned from phoning again ( no visits allowed as there were still Covid restrictions)

Finally, after I involved PALS and the Senior Dementia Matron, mum was discharged but never really recovered from her ordeal and died five weeks later at the end of March. My sister is convinced she chose to die by refusing food and drink, I’m not so sure, but as the GP supported our decision for no further treatment and offered EOL support through district nurses, mums last few weeks were very peaceful. Even so, after the GP was called because mum had become very ill overnight, I was still asked if I wanted her to go to hospital for investigations, I had to confirm that I was withdrawing treatment which was very upsetting but totally the right decision.

It sounds like your mum is not quite so advanced as mine was but as she weakens, you should have more control of where she spends her final few days. A hospital ward is not always the best place for elderly people with dementia to be for EOL and district nurses are available to provide medical support. My mum did not need to sedatives prescribed by the GP, she died before the district nurse came but had she needed them, they were ready at the care home.

I hope you can ensure that your mum has a peaceful life at this stage, it’s very hard though and I am still recovering from the emotional stress of making the decisions although I was fortunate to have very close siblings who were in total agreement.

I’m sorry you are both going through this. MiL had similar problems before she passed away and it was so difficult making decisions for her. Sending you a hug.

Just seen this thread Nanna and wanted to say how very sorry I am for you and your mum and to wish you well.

So sorry to hear what your mother is going through, and how hard it must be for you. Good to hear you had a reasonable nights sleep, slightly easier to cope when you are not feeling exhausted.

Feel a bit better after a nights sleep. But those hours in the Acute Frailty Ward have left me with the urge to have ‘ live fast and die young’ tattooed somewhere! Thanks again lovely people

You are more than welcome.
Let's hope tomorrow is a better day x

Thank you ladies,as ever , for your support. Going to put this day to bed

Excellent.
Remember, it isn't their mother, so unless you point out the obvious, they will let things trundle along as it is.

Thanks agnurse, will ask about this

There is actually no ceiling dose for morphine. If what she's on isn't controlling her pain, either it needs to be increased or another pain medication needs to be considered. I speak as a former hospice nurse.

Or they may be able to prescribe something alongside the morphine, like a relaxant, or anti anxiety med.

Anyway, I'm sure you just wanted to share, not have a list of "solutions".