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Elderly parents
Original poster

My mum hasn't eaten for 16 days, possibly longer.

274 replies

DowntonTrout · 22/08/2013 19:43

I don't know what to do. It could be as long as 3 or 4 weeks since she ate anything solid but she may have had a bite of toast or a spoon of pudding. She is not drinking either and is now just refusing everything. She is dehydrated and very weak.

Mum has dementia, but was doing ok in her residential home. Then she had a fall and fractured her hip 5 weeks ago. She wasn't really eating in hospital but they discharged her anyway just over 2 weeks ago. It looks like she hasn't eaten since.

What happens now? If they take her back to hospital and put her on a drip she will be rehydrated, but for what? She is so unhappy, she says she just wants to die. I don't know how to help her, or comfort her. The staff have murmured about end stages but say it is up to us. I suppose they mean intervention, or not. There is no quality of life left but I feel asif we are just leaving her to fade away and die. She is 6 years into the Alzheimer's but it robbed us of my mum a long time ago.

OP posts:
SPBisResisting · 22/08/2013 21:22

And shes tbe same with drinks? Have they tried complan etc - I realise you wouldnt nevessarily want them to but its one or the other surely - they're either on board with end of life care or they need to be trying to build her strength. They sound lkke they don't really know what they're doing

busyboysmum · 22/08/2013 21:23

I have just been through this with my dad. He was refusing food as he couldn't swallow and finally they put him on end of life plan, also called the Liverpool Pathway. They kept him really comfortable and it was a peaceful way to die for him. He did just slip away, it was really calm and he didn't seem to suffer in any way.

Massive hugs and sympathy from me, it's so hard.

Original poster
DowntonTrout · 22/08/2013 21:27

I nearly killed my Dad with morphine when I had him here. One night he had too much, I think it was his plan, and I sat downstairs willing him not to wake up.

It sounds stupid. We laughed about it afterwards, he only had a couple of weeks to live, but it would have been better than the end he got.

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busyboysmum · 22/08/2013 21:29

I think they finished dad off with morphine TBH, I want the same when it's my turn to go, takes away the pain and the panic and makes it calm and peaceful.

Original poster
DowntonTrout · 22/08/2013 21:32

Yes. The food is a no no.

Only today I realised that drinking was too. We tried her with a nutrition drink and it was that that caused the gas and discomfort / diahorrea etc.

I haven't been there at meal times before today you see. The last two visits (Monday/weds) she was sleeping and difficult to rouse. I was on holiday before that, so only saw her in hospital, when it seemed like she was recovering. I feel so bad for going away. This wouldn't have got like this if I'd have been here, I would have questioned it sooner.

OP posts:
SPBisResisting · 22/08/2013 21:33

:(
You're here now, and you're doing all tbe right things.

Original poster
DowntonTrout · 22/08/2013 21:44

My sister has been here all along.

She said nothing, saw nothing.

I am so cross with her. She is bloody useless. Sad

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Portofino · 22/08/2013 21:54

I am so sorry you are going through this Sad. I have to say though, if this was me, I would be pushing for medical opinion on just how to make her end more comfortable. She sounds as if she is beyond trying to sustain her with food/drink. My heart breaks for you though.

fengirl1 · 22/08/2013 22:03

Downton, I'm sorry to read this. Hmm I hope your mum's ending is as peaceful and pain-free as it can be whenever that may be.

Original poster
DowntonTrout · 22/08/2013 22:11

I will push for that Portofino

That is all I want. I suppose I expected that one of the health care professionals would recognise what was happening and sit me down to discuss it. Sad

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ColinButterfly · 22/08/2013 22:15

I'm sorry you're going through this. It's so shit. Please be kind to yourself, no one has a manual on how to deal With this and it's complicated by being a human being with emotions. The staff and the GPs however should know what they are doing, but sadly this isn't something you can rely on.

Wishing a peaceful time ahead.

Paddlinglikehell · 22/08/2013 22:15

Downton, my Nan did this it was heart breaking, she was in her own home and just stopped eating, only drinking small sips, we didn't know of any dementia, she had been fine, but for some reason just didn't want anything.

I still can't believe she just did this, I would make Complan porridge, get little treats, she just wouldn't eat it all. I used to sit and talk to her how she had to eat etc. etc. my Mum and I started to stay with her, she didn't want to go to bed, just sat in her armchair. We would help her to the toilet (similar to your Mum). The doctor said she had made a decision and all he could do was make her comfortable.

Eventually she was weak and hallucinating, the doctor prescribed morphine, we were very upset, as she was only 75, but had given up, the morphine was a relief to be honest for all of us. She passed away peacefully in the end, but it was all so horrid and frustrating, so I completely understand what you are going through,

I think all you can do is keep making a fuss and insist the doctor gives her something, there are people who are more qualified to tell you what to do, but just wanted you to know that you are not alone, in either the frustration, sadness and loss of your Mum as you knew her.

I am so sorry for what you are going through, she is lucky she has a wonderful daughter to fight for her. Flowers.

smokinaces · 22/08/2013 22:16

Oh downton, my grandad is at the exact same point, dementia and refusing food and fluid. But the difference is his home has been wonderful about it all, kept my nan informed, got the doctor and nurses in etc. I feel for you, I really do, its devastating enough watching my grandfather go through the last two years, I can't imagine a parent :-( hope you get some answers and help tomorrow.

Portofino · 22/08/2013 22:22

I hate to say it but I honestly believe people are more compassionate over animals than they are old people. If op had taken her elderly cat to the vet she would get more options/info than she is getting here. It is tragic.

Bonsoir · 22/08/2013 22:25

I'm so sorry to read of your distress at your mother's situation. It is heartbreaking to witness our parents' decline.

It does sound, from your description, as if your mother has had enough of life. I hope that you can find the support you both need from the medical professionals around you to help you in the next few weeks and months.

Original poster
DowntonTrout · 22/08/2013 22:26

Thank you so much Paddling

The hip fracture, I believe, was the final straw. The Alzheimer's was bad enough, and even so, she still had some quality of life. Only 6 weeks ago she was sitting in my garden, getting so much pleasure from the sun, the dogs, the cats. She was calm, not agitated like some with dementia could be. Calm but kind of empty. Often confused and with a memory span of 30 seconds. But mostly peaceful.

Now she is frightened and feels very ill. She has had enough and I believe she knows what she is saying when she says she wants to die. I just want peace for her and for her not to be frightened anymore. Today when they tried to take the blood she was shouting at them to get off her, she didn't understand what they were doing, trying to help, she thought they would hurt her. I don't want her to have to go through that.

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Original poster
DowntonTrout · 22/08/2013 22:34

My Dad, god bless him, always said "they shoot horses, don't they?"

I hope when my time comes there is a choice. Anyone who has been here will surely understand that euthanasia must have its place. It is only a question of when, and with dementia you pass the point of making an informed choice before you get there.

smokinaces did your GF go on like this for two years or was that the length of his illness? I can't believe she could possibly survive like this for that long.

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Portofino · 22/08/2013 22:57

Can you tell them no ore blood tests?

Original poster
DowntonTrout · 22/08/2013 23:04

I will now. I am glad they tried today really because the nurse could see how bad she was and asked if she was always like this ( she hadn't seen mum before.)

When I said how much mum had deteriorated she was concerned and said we needed the GP. So even though it was unpleasant, it was kind of necessary. And I am glad. Sometimes a pair if fresh eyes can see things that no one else can.

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Original poster
DowntonTrout · 23/08/2013 07:46

I have thought a great deal about this overnight.

I have written down the important things I need to remember and will try and insist that what she needs now is to be made comfortable and pain free.

My brother and sister need to be on board with this though, which may not be so easy.

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KeepTheFaithBaby · 23/08/2013 08:00

Sounds like a good plan Downton.

galletti · 23/08/2013 08:20

Hi Downton. So sorry you are going through this. I lost my mum to Alzheimer's earlier this year, and your story sounds so familiar.

Mum had this horrible illness for roughly eight years, but had always been physically quite fit until this time last year, when she started suffering from urinary infections etc. By January, she had stopped eating and drinking and was sleeping for most of the time - it was heartbreaking watching the carers trying to feed her something, when she did not have the capability to take it. If your mum is in the same situation, I really do think you should consider the end of life plan - The Liverpool Care Pathway, I think. The home should have a GP that can advise you - insist on it. And also talk to the home manager. If no luck with that, I would call the Alzheimer's Society for some advice.

Our intention was for mum to be on the plan in the care home, but she ended up being rushed into hospital with a chest infection, and the decision was made for her to be on the plan there.

They will stop giving your mum fluids and food, and will stop any intervention, ie taking bloods etc. There are drugs that the doctor will give to ease any discomfort/pain for your mum, if she needs them. I think there are about five conditions they will treat. They should also turn your mum regularly, so that she doesn't get bed sores, and will change her. We were provided with little hydration sticks to moisten Mum's mouth and lips.

We were told that mum could last a day or two, but she actually stayed with us for five days, which was hard, becuase at the time I couldn't help feeling that perhaps we made the wrong decision. But it was definitely thie right decision as there was no life left for her. She passed away in comfort and with dignity, which is what you want, too. We also had time to be with her in those final days which was so comforting.

I hope this helps a little. Please let me know if you want any more info. Thinking about you.

SPBisResisting · 23/08/2013 10:00

Thinking about you today downton

smokinaces · 23/08/2013 10:24

My grandfather went into the residential home two years ago, which marked a significant change. Ever since he has lost weight and any memory he had. To see a grown man get comfort from a stuffed toy and acting like a five year old is heartbreaking.

He started refusing food around two weeks ago. My whole family are now on standby for my nan, arranging daily lifts for her as opposed to her using the bus so she is there every day. He was always a large guy in every way, now he is an eight stone shadow. My nan feels he has made his decision so there will be no drips or hospital trips for him, its all now palative care. They haven't said how long, but with eating barely a yogurt a day it can't be much longer.

SPBisResisting · 23/08/2013 10:36

Im sorry smokin. The more I think about this dreadul disease the more I realise that it basically reverts people to babyhood. Near the end of her life my grandma's hands were in fists - just like a newborn.