Aged mother in law

Only one n ten of us are likely to end up in a care home.

I have twice had family members in a care home, one, a small local one, the second part of a chain and I cannot fault the care they received.

It's a tricky and upsetting scenario. We don't do death well in my experience.

Don’t forget these care homes are a business and are in it for the money first & foremost

Yes, most of them are businesses, but I can't see why it's good business to try to keep people who need lots of care alive when they could have someone much more able filling that space! Logic suggests a speedy death is best for the finances.

I just don't get how dragging a death out can help at all.

Don’t forget these care homes are a business and are in it for the money first & foremost

This is the stuff nobody talks about. I have been through it with one set of relatives and now it is being repeated with another.

Whilst this happens, your own life advances, the years roll by, the permanent state of stress becomes you.

Kind people become obsessed with food as some sort of marker that they are "doing something", the person is "picking up". The care home staff are covering their backs and terrified to say anything.

I recall one of them shoving crumble and custard into my mother as if she were an infant.

Its awful and anybody going through this I'm sorry.

Re waiting to be alone - my lovely, thoughtful and generous father did this.
He was totally alert but struggling to breathe. Nothing further could be done. He kept, through gasps, going on and on about an art exhibition nearby and getting really agitated and increasingly insistent that I should "take the children" to it.

Can you imagine wanting to go to an art exhibition when your wonderful parent is dying?
He bullied my mum out "for a rest". We had been with him day and night until then.

I really miss him.

NotSpaghetti

MrsMatt she was waiting for you to pop out.


I think this happens a lot.

My Mum was 85 and on end of life care with Alzheimer's at home.
She'd already stopped eating and drinking.

Her GP said she could be admitted to hospital and put on a drip, but it would have only given her an extra couple of weeks and would have put her through a lot of distress.
Dad wanted to keep her at home and everyone was in agreement with this.

Her GP organised for District nurses to call each day, and extra care calls.
Mum was in her own bed at home, with Dad sitting by her side.
She died after two days when he popped downstairs to make himself a cup of tea.
He was upset he hadn't been there, but I assured him it was often the way.

It was her time to go 🦋

I didn’t have POA either, in the end it didn’t matter all I needed were sympathetic staff and Drs which thankfully we got.
Mum fell in the care home banged her head, the night staff called an ambulance and she was taken into hospital. Numerous tests were done, but she only wanted to sleep and be left alone, and at 92 who could blame her.
The Dr phoned me after several hours to say he couldn’t find anything wrong with mum apart from she was still in delirium.
He asked if I had POA and what did I want to happen to mum. He said he could admit her to a ward, do more tests and wait and see if she improved, or send her back to the care home on palliative care.
I said I wanted mum back to the care home. The Dr said he would have to have permission from the consultant and get back to me, all was agreed and mum was sent back to her familiar bed and room that she loved.
Mum and us were well looked after, mum was given frequent mouth washes, lots of friends and family visited her. She was administered a syringe driver after 5 days to keep her more comfortable and she passed away peacefully two days later.
I often wonder if I’d given mum another chance what would her life have been like. But I know I did the right thing and I’m so pleased I had sympathetic lovely people around me when it mattered.
Keep on advocating for your loved one. You know what she would have wanted.

NotSpaghetti

MrsMatt she was waiting for you to pop out.


I think this happens a lot.

Yes, it does. My father did it. He was dying from a combination of a failing aortic valve that was making breathing a struggle and an infection, which would not clear that made an operation impossible.

My sister and I were told the end was approaching, we sat with him for 5 hours. He was fully metally alert, which made watching his struggles even worse, then we nipped out to the Friends Cafe, opposite the ward doors for a cup of coffee. We were gone about 10 minutes. When we returned, he had died.

The nurse said that some people do not want to have people around watching them die so somehow hang on until they are alone. This would be a totally expected reaction from our father, who was always a very private man.

MrsMatt she was waiting for you to pop out.


I think this happens a lot.

My husband's last full meal was Christmas lunch 2003. Chemo had taken away his sense of taste . After that he had little each day because the had sent himself a goal to reach his 47th birthday beginning of February. He didn't like eating and did drink but mainly water . He was badly constipated and even laxatives didn't help. But we got him to his birthday and he died 4 days later at home with me and our children.

My dad had wanted to die the last 2 years of his life . I helped mom look after him at home. He only ate because mom wasn't ready for him to die. He hated what he had become this weak frail old man , couldn't stand the sign of his own body. His last few weeks he only ate if I was their but only yogurt and fruit. He finally got his wish and died. Mom asked me why did he carry on for so long I told her it was because you couldn't let go and he knew that . She wished she had told him to die sooner.

My mother in law was unconscious the last 3 days of her life in hospital. She had told me she didn't want to be saved . So I just wet her lips with a sponge while I watched her die. No drips or feeding she didn't want that and the medical staff abided by it.

Mom lived with me last 18 months of her life . She only liked soft food. Stews,cottage pie,fish pie things that was easy to eat. But always porridge for breakfast. She only wanted biscuits and tea for lunch.She had cancer and dementia. My mom died 4 months before her body did. When she spat food at me the first time and told me I was poisoning her . I said ok. What do you want she said porridge . So that's what she had porridge made with double cream and dark brown sugar twice a day . Her last 2 weeks she spate out her tablets I talked to out GP and she said don't give them to her as they weren't doing anything to save her. Mom's last week after she spate her dinner porridge at me . I only gave it to her for breakfast but a bigger bowl which she ate up. The day before she died she push it away so I didn't give it to her . She only wanted water . So I gave it to her . Her last day she said she was to tired anymore and it took her until the early hours of the next morning to die . But it's what she wanted to be with my dad.

I know this doesn't answer your question but this is what I have experienced. My daughter already knows my wishes and I took out both powers of attorney in 2020 and my daughter and son in law are my attorneys .

I do not want my daughter to go through what I did especially with my mom and what dementia did to her. We are talking about food . So just talked about that.

Forcing someone to eat is wrong . Mom even dementia destroyed her knew what she wanted . She always believed she would be with dad again . If my husband had asked me to end his life I would have same with my dad and mom . Quality of life not quantity is what's important as without quality what's the point of quantity if you don't want to live .

I know some will say life at any cost but you watch someone suffering day after day for months see how you feel .

sparkynan

It’s worth people making an advance decision to refuse treatment if you are not able to communicate with health professionals, family and carers.
Information is on the NHS advance decision to refuse treatment.

You can also add your wishes re ‘striving to keep alive’ on a Health and Welfare P of A.

Hear, hear, Karen.

My dear mum passed away last October aged 91.
For the past 2 years her quality of life was awful and it was truly making her miserable, struggling to breath with COPD , 2 fractured vertebrae and a failing heart, plus other medical problems.
She decided to go for palliative care so finally she passed away in hospital pumped with painkillers and nothing else.
She peacefully slept for a few days till she passed away.
I realise this is a different scenario to your DML as my mum didn't have dementia , but my point is that I feel it's cruel the way people are being fed so many drugs to keep them alive when they are so jaded and most probably just want a peaceful passing. Don't we all at our end time ?
My mum for the past 2 years kept saying she had had enough , but the docs kept feeding her so many drugs to keep her alive .
My thoughts are with you

I have now been through this 3 times with my very nearest and my GP and consultants have always confirmed offer but never force. Offer all the food you think and believe they like, but never force. The body knows too well when it has started to shut down and food and drinks are no longer required. As everyone is saying sponges keeps the mouth moist, dipped in a drop of pineapple is very refreshing and cleans well. Warmest wishes to the OP who is going through this difficult and very sad time now.

Absolutely this. Forced feeding is not prolonging living, it’s prolonging dying.

It’s worth people making an advance decision to refuse treatment if you are not able to communicate with health professionals, family and carers.
Information is on the NHS advance decision to refuse treatment.

An aunt of mine, in her 80s with dementia, in a very nice care home, started refusing food and drink after the umpteenth UTI - she was always prone to them anyway.

As the only contactable relative at the time, I was asked whether we wanted her taken to hospital for drips, or left where she was, where they d keep her comfortable, but where she would almost certainly die.

Of course 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, where they’d keep her comfortable. It was only going to happen again, probably quite soon.

I sat with her a lot during her last days. Her mouth was kept moist with those little sponges, but she continued to refuse food and drink - closing her mouth and turning her head away.
She was apparently asleep nearly all the time and drifted away after about a week.
Although I’d hated having to make the decision, I never once regretted it afterwards. I’m sure it’s what her pre dementia self would have wanted.

TBH hospital is a terrible place for anyone with dementia anyway, when they can’t understand what is going on, or why.

I have no wise words but sending you my love

Thank you so much for all your thoughts and messages. It's a difficult time and it's good to hear from others who know exactly how we're feeling.

Justanovice
I totally understand, my 94 year old mother is in her eleventh year of Alzheimer's care. A horrible experience for all concerned,nobody wants their relative to suffer. I think there is a point where 'care' becomes unwittingly the opposite.
A very emotional difficult subject, but where family should be listened to.
I wish you and your family well.

I had my Mum live with me for 5 years until she died after her partner could no longer cope. Mum had dementia and became immobile and stopped communicating. She seemed to enjoy her food and we would mince up a meal in one of those old fashioned mincers. Mum's swallowing frequency wasnt so good so we were prescribed Thixo-D to thicken her drinks. You are more in control of a drink when it is thick than thin and it is less likely to go down the wrong hole. I agree that it would be nice for the lady to have some yummy indulgent snack/meals. Thinking about you all.

You've done well my dear, my Daughters answer to me getting old was to get rid of me before she had to put herself out. Your Mum was lucky. God Bless..

Keeping them comfortable.
They should be offered sips of water and kept comfortable with mouth cares as suggested by Farmgran.

Camille333

If the patients swallow reflex has gone its too dangerous to eat

My DM had advanced vascular dementia. She was doubly incontinent, sleeping most of the time and had weighed about 5 stones. She had been in a care home for a couple of years.

I was contacted by the home and told that they would be no longer offering my mother food or drink as her swallowing reflex had gone. If they tried, the food or water could go into her lungs and cause pneumonia.

The doctor said that as her dementia was so advanced, she shouldn't go on a drip. He said she would (basically) fade away. This could take up to two weeks depending upon how strong her heart was.

My DM died two weeks later at the of 83. She had no food or drink for two weeks, just a sponge to moisten her mouth. I was visiting multiple times a day. My DM did not seem to be in any pain but it was terrible to witness.

I admit to asking the doctor, after the first week, if there was anything he could do to 'help her on her way'. Obviously, he said no.

We wouldn't treat an animal like this.

HettyHop

Thank you for that explanation Lathyrus3. It explains why my mum, even when barely conscious, was rejecting every attempt to give her any fluid in those last few days.

As a doctor once put it, ‘They are not dying because they are not eating and drinking. They are not eating and drinking because they are dying.’