Aged mother in law

I’m sorry you are going through this as I know exactly how hard it is to not shout at the home care staff. My DM had a massive stroke at 74 and was completely paralysed in the end apart from one elbow to her hand. She had 2 lots of cancer neither of which killed her, was blind, almost deaf and numerous other problems but luckily she hadn’t lost her marbles! The day she died of a chest infection, she had told the staff she would not go in to hospital, she had already informed me that when she had had enough she would not go into hospital anymore, so I reiterated that when I got to the home that morning and she didn’t want anymore antibiotics, she’d had enough of life! The care home still insisted on calling the Doctor who insisted on prescribing her antibiotics. He respected her wishes not to go into hospital even though he made it clear to her he thought she should. After he left she felt comfortable enough to know I wouldn’t let anyone else disturb her. The nurse from the care home brought her antibiotics in a syringe because it was obvious she couldn’t swallow anything and as she tried forcing them into her mouth choking my DM against her wishes I did shout at the nurse ‘for Gods sake leave her alone’! So the nurse said to me you do know what will happen and I just said yes, she’s had enough. My DM had told me in advance that she didn’t want a peg when it was offered and she could no longer swallow due to the progression of numerous TiA’s after her massive stroke 8 years prior. Obviously I didn’t want to lose my darling Mum but we both knew she’d had enough of the awful vegetative state her body was in and the umpteen pills she was being fed daily. I sat with her all day whilst she slowly went into the ‘death coma’ 1) to obviously be there with her and 2) make sure nobody tried giving her anything against her wishes.
She passed away at 5.30pm that evening peacefully and I was so glad I adhered to her wishes and stood my ground. Don’t forget these care homes are a business and are in it for the money first & foremost.
Be strong when dealing with them and make it thoroughly known what you know her wishes were before the dementia. My husband has Vascular & Lewy body dementia and has made it perfectly clear to me what his wishes are at the end. It’s not about me and my wishes it’s about him and his. But I always keep in mind you wouldn’t see a dog suffer some of the indignity’s people experience when they get old and keeping them alive in these homes is sometimes downright cruel in some circumstances!

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.

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

I don't know if it would be classes as 'lucky' or 'unlucky' to have the decision taken from me. My mum had a stroke in May 2024. I found her on the floor. She spent 3 months in hospital, was discharged one afternoon and readmitted early next morning. Care transferred to a care home. She started to refuse medication, then food and water. She passed in September. From when I was a teenager she would say to me, 'if I ever get that bad where I cannot look after myself, I want you to leave me with a glass of water and a bottle of pills'. She made her final decision. It was heartbreaking to watch her. I sat with her for the whole day and most of the night. I popped home to feed my cat, 10 minutes away, she went when I was away. I don't think someone should be forced fed, maybe offer things she likes to eat it drink. It is hard I know xx

Lathyrus3

As death approaches most bodily functions shut down, particularly digestive processes. Food and even water cannot be processed but remain in the body, or as in Granmarettos experience are vomited out by the body rejecting them at an early stage.

Food enters the stomach but often cannot leave and the stomach becomes swollen and painful or enters the digestive tract and causes swelling there.

Water cannot be processed by the kidney to make urine and remains in the body, often in the lungs, which makes breathing difficult and causes what was once known as the “death rattle” a form of pneumonia. At this stage keeping the mouth moist and comfortable is important.

It is human instinct to want to nurture those we love but often good intentions lead to additional distress.

This is not to say that the OPs mother in law s imminently dying but just to point out that what seems to be withholding of care may not be that at all.

Thank you so much for posting this. I wish these facts were more widely understood and explained to families

I have witnessed this sort of thing in my mother’s (dementia) care home.

I dare say it is all done with the best of intentions, but I was very clear to the CH staff (once my mother was past a certain stage) that there was to be no badgering and pestering to eat or drink, if she no longer wanted to.

The staff agreed with me, and in the end it was never an issue.
IMO you would be perfectly entitled to make such feelings/wishes - re ‘striving to keep alive’ - known to the staff.

From all I’ve ever read or heard, staff often seem to think that relatives will want their family member kept going for as long as possible, regardless of quality of life.

Which may well not be the case, which is why IMO it’s necessary to discuss it with the staff.

We faced a similar situation with my Dad who died back in 2001. He was at home but very unwell, in his mid 80s but with some long standing health issues. He had stopped eating and drank very little, his wonderful GP had promised that she would arrange care if it became necessary. He was very weak and my sister and I had to get him to the toilet and he couldn't stand and it was very distressing for everyone, most of all him.
After talking to him we agreed to ask for that help from the GP and that afternoon an ambulance took him to a respite room in a local care home. There was talk of fitting a feeding tube but I was very opposed to that as I could see he was failing and he really had 'had enough' and I understood that once fitted it would prove difficult to have it removed. He was in that care home for 3 days and one of my sisters or I were with him the whole time, often all 3 of us. It was awful and painful to watch him but we do know that he went very peacefully and some time later we acknowledged we were actually privileged to have had that time and to be with him at the end.
It doesn't offer any help for your situation justanovice but hope you can all stay strong and advocate for your MIL. Now in my 70s myself I really dread growing older knowing all it may bring.

This is a truly horrible situation - so sorry OP that you are experiencing this. My mum broke a hip and in hospital developed pneumonia. It was decided to give her antibiotics which might work and they did. However, she was not allowed to have anything by mouth and suffered from that. She was fed by tube for a while which was absolutely cruel - she pulled it out a few times. Eventually she recovered enough to come out of hospital and go to a care home, where she spent 6 months in bed, on oxygen, hardly eating and eventually died. A slow agonising time for her and my father. I find it difficult to come to terms with the fact that there was nothing I could do to help except visit her most days and feel so guilty.

I understand how you feel. It's nu use forcefeeding a person who gets sadder by the day. At the care home they probably do what they are used to, but more effort should go in adding more calories the the food your MIL likes. An example : you can dilute milkpowder in full-fat milk to use for making milkbased desserts or certain sauces. I think it would be better to add a few happy days to her life than a few months of sadness and frustration.

I realise that's the sensible thing to say farmgran but if you have never been around death and have no idea what will suit you when the time comes, you have to rely on medical advice.

Everyone is different and their wishes change. My DM was ready to go but 5 years earlier she was having an operation and was really scared she would die.

No-one mentioned death in the hospital. I asked the consultant what would happen to mum. He said they have geriatric wards. Well that would have been the last thing she wanted. Perhaps she heard him and decided it was time to go in the admissions room.

What supplements?

She may possibly still enjoy an ice lolly, or ice cream.

She should be offered whatever she wants, and I would absolutely insist on that.

If she refuses the things she likes, which are easy, then it could be said that she is declining to eat.

Eventually when people have had enough of living they stop eating. Its natures way of winding things down.
They should be offered sips of water and kept comfortable with mouth cares.
It shows how important it is for us all to do an end of life directive so our wishes are clear.

So sorry that you are going through this. My mam was thankfully not forced to have anything and died aged 99. It’s bloody horrible getting old. Sending you love and hugs and try and stay strong. 🤗❤️

As death approaches most bodily functions shut down, particularly digestive processes. Food and even water cannot be processed but remain in the body, or as in Granmarettos experience are vomited out by the body rejecting them at an early stage.

Food enters the stomach but often cannot leave and the stomach becomes swollen and painful or enters the digestive tract and causes swelling there.

Water cannot be processed by the kidney to make urine and remains in the body, often in the lungs, which makes breathing difficult and causes what was once known as the “death rattle” a form of pneumonia. At this stage keeping the mouth moist and comfortable is important.

It is human instinct to want to nurture those we love but often good intentions lead to additional distress.

This is not to say that the OPs mother in law s imminently dying but just to point out that what seems to be withholding of care may not be that at all.

I believe from what I’ve seen and heard that some homes do withhold food and drink from very elderly frail people who are close to death.

There used to be an initiative called The Liverpool Pathway but I understand this was supposed to have been banned some years ago.

A friend’s Mum was nearly 100 and barely alive. It wasn’t until after she died that she realised she had not seen any water or other drinks on her Mother’s bedside whenever she visited. She strongly suspects that the staff did not provide any in her last few days.

I am puzzled by this. When my grandmother was in care many years ago, the care home told my parents that they thought she was approaching death because she had stopped eating and was refusing to eat, which I suspect meant no more than turning her head away and refusing to open her mouth

I do not understand how anyone can be forced to eat unless they are fed through a peg or on a drip. In fact refusing or not wanting to eat is one of the signs that someone in her situation has started the process of dieing. www.nhs.uk/conditions/end-of-life-care/your-wellbeing/changes-in-the-last-hours-and-days/.

Presumably Care staff are offering her food and she is refusing to eat. As to the food itself. If what they are offering her is food she dislikes, then it is perfectly pointless. You could try talking to the home about at least offering her something she would enjoy.

When DM was taken into hospital with pneumonia. We were told not to give her anything to eat or drink .

She was crying for water. We found some sponges to wet her mouth and gave her water. How could we deny a dying person their dying wish.

Yes she vomited. So what!

My DSis and I, & our DC took turns to sit vigil beside her all night. She died the
following morning.

I feel for you justanovice.
Remember don't be afraid to question Authority.

Keepingquiet Possibly the "demarcation" lines in families differ but in our very small one I am just as responsible for the care of my MIL as my husband and I certainly wouldn't leave him to deal with it alone.

I totally empathise too. Unfortunately life can be very cruel. My Mum, diagnosed with vascular dementia and Alzheimer’s, also spent her final years in two care homes, specialised but not always of the same caring standard. Luckily the second was the better one IMO.
She was a wonderful, kind, caring and private individual who would have hated all the indignity etc, had she been aware. Hopefully she wasn’t. It’s horrible for everyone whether the individual or the family. However, we weren’t in the position to be able to care for her at home, so the professionals were.
Should I press “post”? Ten years later, I still feel I should have done better

I too totally empathise.

My MiL is also in residential care, she’s 90, with very advanced vascular, mobility issues, incontinent. She’s extremely well looked after, but given she was a very active and independent we know she’d hate this (non) life.

This must be very distressing for you but she is your MIL not your mum.

I think these things are best dealth with my immediate family.

It would be equally distressing to know people in similar situations are not being fed at all.

It is horrendous and you have my sympathy, do you know which GP sees her? The one who attended to my mother, whilst a different matter, agreed no more antibiotics for my mothers continuous chest infections.

doodldog
It's certainly my worst nightmare, and having known my MIL for over 50years I'm fairly certain that it's hers too.

My mother was in the position you describe when her father neared 100, justanovice.

My grandfather's care was 'delegated' to a care home as he needed hoists and 24 hour care - he was blind and deaf by the end, and unable to walk or get out of bed.

He wanted to stop eating, as he had no power to end things any other way - any options were out of his hands as he was too weak to do anything such as overdose on drugs.

My mother was asked to sign to say that she was aware that he was refusing to eat, and that she withdrew consent for the home to feed him against his will. This would have been tantamount to her consenting to allowing him to die.

Of course there is a dilemma here. Who should take responsibility? The nurses, or family? I fully understand why neither party was willing to do so.

By rights, my grandfather should have had agency to decide for himself, IMO, and I sincerely hope that the recent vote on assisted dying will spare people these awful decisions in future.

That's not much help, but I am sending virtual support to the OP. It's a horrible position to be in