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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:
Original poster
DowntonTrout · 27/08/2013 01:59

She is settled with a little help from some diamorphine.

We have said no to blood tests, a drip or any interventions. We feel it is better that way rather than trying to get her to rally for a bit then go downhill like this again.

I feel like I have signed her death warrant.

They said she is not ready for LPC but asked us where we would like her to go to be cared for for that. She will not be able to go back to the home she is currently in and will need to be somewhere that can administer the drugs for end of life care. They agreed that she is best being made comfortable somewhere " nicer" than the hospital for this time.

I hate that the decision is down to me and I hope I will be able to live with that decision afterwards. My brother and sister are in agreement though.

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jumpingpillows · 27/08/2013 02:49

You are doing the right thing x

Numberlock · 27/08/2013 03:20

For what it's worth, I definitely think you're doing the right thing.

My mum is starting to go down a similar path so I have found this thread very helpful.

I hope you have lots of support in real life at this terrible time.

fffinsake · 27/08/2013 07:12

It is a huge and desperately hard decision to make, but the right thing to do. Hang on to the fact that for your mum the alternative is much worse. X

magimedi · 27/08/2013 07:58

ffinsake has said exactly what I was thinking.

Flowers
Original poster
DowntonTrout · 27/08/2013 08:45

Yes I think the alternative is worse.

It is no good for medicine to keep someone alive who has no desire to be here. When being alive, is so disparate from living. It would just be a painful existence and with her lack of mobility she is all the more open to infections etc. it would be one decline after another and only suffering for her.

There is no future, only time.

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eslteacher · 27/08/2013 08:46

Oh Downtown, I just read through this thread and its so desperately sad. I'm so sorry for both you and your mum. Its all so unfair and so horribly helpless that to some extent its now just about waiting and letting nature take its course, and to have so little power over how that happens.

I've been thinking a lot about all this recently as my DGM 95, while still in her own mind, is suffering from increasing health problems and its doubtful how much longer she can go on living in her own home. She has talked openly about never wanting to go into a care home or be a burden by living with my parents, for as long as I can remember. She has been ready to die since her DH died 40 years ago. Yet none of her wishes ultimately mean anything...it breaks my heart to think of her going to live in a care home and just waiting to die there after living in her own house all her adult life. Its scary that in the end so few of us have any control over how we finish our days on earth.

WynkenBlynkenandNod · 27/08/2013 08:48

Another one who thinks you are doing the right thing and ffinsake has summed up what probably most of us who have faced this or know we will, feel.

You might be the one physically there and speaking to the medical profession but with your Brother and Sister both in agreement it is a joint decision from all your Mum's children, not yours alone.

Bloodsocks · 27/08/2013 09:06

dying.about.com/od/thedyingprocess/a/process.htm

I had to post this, it really helped me to come to terms with my nans death as we could see the stages she went through. I'm sorry if it is out of place but I found comfort when reading it.

Dementia is truly a terrible disease and its so hard seeing someone you love go through it. We were lucky, my nan still recognised us most of the time, but she would constantly say she wanted to die and was on anti depressants. As a granddaughter it was so difficult to hear her say that.

Her decline and death were quite sudden but the signs had been there for months before and that article helped me to understand that.

Flowers for you, your mum and your family.

twentyten · 27/08/2013 15:17

Is there a hospice near you? they offer wonderfulcare to everyone.Thinking of you.X

BadgersRetreat · 27/08/2013 15:24

Yes my dad was in a hospice when he died. Mum said they were amazing in there.

Original poster
DowntonTrout · 27/08/2013 17:08

Well today she has rallied. I can't believe it.

No drip, no medication, just the diamorphine last night.

Her colour is up. She says she is thirsty and has drunk a full cup of water.

She is also very angry and shouting, so much so I had to leave. It is clear there is a lot of fight in her. She is not laying down to die and cannot just be sedated. There has been no assessment yet. I am so confused.

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SPBisResisting · 27/08/2013 17:22

Glad she has drank, so sorry she is angry.

eslteacher · 27/08/2013 20:25

It must be really unsettling to resign yourself to her continuing one way and then things turning around a bit. Thinking of you both.

mathanxiety · 27/08/2013 20:56

Just Flowers for you. Am thinking of you.

Talkinpeace · 27/08/2013 21:03

There is a known correlation between broken bones and real ups and downs in mindset of Alzheimers (its to do with the marrow cells getting into the bloodstream).
Hydration and analgesia are the best way.
If she wants to stay she will, and if her body has had enough it will.
Be as strong for yourself as you can as your mother is in her own bubble now.

Fionar71 · 27/08/2013 21:05

Do ask about whether they can prescribe something like lorazepam for the anxiety/erratic behaviour as it can be calming but, in low doses, won't be detrimental on her overall condition. This also comes as a sub-lingual preparation meaning it just gets put under the tongue and dissolves so doesn't need swallowing.

Fionar71

Fishandjam · 27/08/2013 22:05

I'm holding your hand too downton. My mum is in a care home with dementia, though she's fairly stable at the moment.

I guess that all you can do at the moment is see what each day brings. And please take care of yourself as much as you can.

Original poster
DowntonTrout · 27/08/2013 22:36

I will see what tomorrow brings.

I feel like I'm going mad. Last night discussing the no intervention and DNR with the doctor- who agreed- and today a different woman.

Mum certainly needs something to calm her. She was so nasty. I know it's the Alzheimer's talking but it cuts to the bone. She has also forgotten- again- that her partner has died and when I told he had, her she cried.

It is no good telling her he's just popped out because she justs says where is he- is he dead? Then panics. She asked me if I killed him then said she knew I wanted to kill her too. Horrible.

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NoToast · 27/08/2013 22:45

OP I read the stages of dying that someone linked to above. It did mention that there might be a sudden rallying very close to the end. I wonder if this could be the case with your mum?

I am so sorry that you'e going through this. MIL has Alzheimers and it can be so difficult to cope with day in and day out.

Please don't feel ashamed of seeing that your mum has so little quality of life left that she would be better off slipping away. You are just being clear-sighted and compassionate to her emotional suffering.

Portofino · 27/08/2013 22:50

Downton, how awful! Sad. I don't know what to say really, except, she is ill, this is not the real her anymore. You have made the right decisions IMHO, and all you can do is keep going on this path. Xxx

littleblackno · 27/08/2013 23:06

Oh, I really feel for you in this situation. I hope you are able to find a home who are able to manage her needs better and where you can be reassured she is being cared for in the best way. If you have to find one then don't let them know you are coming, just turn up. Also make sure your mum has been assessed for Continuing Health Care Funding (CHC). Whereby the ost of her care will be paid for by NHS meaning she doesn't have to make any contribution. I realise money may be the last thing on your mind but this should be being considered by the professionals involved and many of them overlook it.

I've read most of the thread but apologies if i've missed if this has been said but, have you reported the fact that her call bell was unplugged? This could be a safeguarding issue if the home do it regularly with clients. If you are able then please give your local adult social care a ring and let them know so they can investigate.

You should definatly not feel guilty about how you are feeling, like you pointed out dying is a process and so is grieving. This can also start before the person has actually died.
Take care of yourself.

littleblackno · 27/08/2013 23:08

I mean, just turn up when you go to view any places, not with your mum - sorry! Blush

Earthymama · 27/08/2013 23:11

Just want to say I am thinking of you, and sending a cwtch xx

Original poster
DowntonTrout · 27/08/2013 23:22

Thank you all. Again.

I actually thought she was dying last night. She was choking and couldn't breathe. Her blood pressure was low, it was something over 45. Her temperature was 36. Her blood/oxygen levels low. . She suddenly had severe pain develop down the left hand side of her face- which is why they gave her the morphine- and I kind of thought/hoped it may be a mini stroke.

Today, sitting up shouting at me and drinking with none of the choking.

The truth is when she says I want her dead- its true really. It is like reasoning with a two year old. You can't, then they just have a tantrum and scream at you anyway.

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