Final stages of dementia ?

[timshaw]

Hi,
My wife and I care for my mum who is 87 and was described yesterday by our GP as being in the final stages of dementia and "soon to die."

My mum can only now take liquids and is bedridden. We asked the GP what to do once she stops eating and drinking completely and he advised us that there was not anything that could be done. Suggestions from us such as admitting her to hospital and having her put on a drip were dismissed.

Neither of us want to see mum starve to death or dehydrate. Is there anything that can be done ? Are hospitals obliged to admit her ?

Thanks for any advice.

 

[MrsTerryN]

Sorry about what you are going through and that your path to TP is for such a difficult situation. I don't have any knowledge of this situation as my mother isn't at that stage.
I think the doctor could possibly be referring to PEG which is a feeding tube and that which most specialists nowadays believe that forcing food and such provides no quality of life to people with advanced dementia.
I think I have read that water or such fluids can be administered however as I said I have no experience of this.
I am quite sure others who have experience of this will be along to offer some insights or suggestions for you and your wife

 

[Witzend]

I am so sorry you are faced with this. I have been through it all with a lovely and much-loved aunt who was nearly 87, had advanced dementia, and had begun to refuse food and drink. She was in a very good care home at the time. The family were consulted about sending her to hospital for drips, etc. but her GP advised that it would not be so much as case of prolonging life, as of prolonging death. There was also the fact that a move to hospital would have been distressing for her - a strange, noisy place with strangers poking her about - since she would have been unable to understand what was going on, or why.

I have also heard it put like this: 'They are not dying because they are not eating or drinking. They are not eating or drinking because they are dying.' I gather that there often comes a point in such situations where the organs begin to shut down and cannot cope with processing food or drink.

Although I agonised so much at the time, I did not regret it afterwards. My aunt was in fact very peaceful, sleeping nearly all the time and she did not seem to be in any discomfort. I sat with her a lot during her last days. The care home staff, who were extremely kind, did continue to offer fluids and teaspoons of yoghurt etc. but she would close her mouth and turn her head away. She simply did not want any of it, and I knew in my heart that she had had enough. Her mouth was kept moist with little sponges and she just drifted away very peacefully.

This was my experience, and if I had to make the decision again for my mother, who is 96 with advanced dementia, I can only say that while of course I would be very sad, I would not agonise about it again, at least not in the sense of worrying about what was in her own best interests. She is such a very poor old thing now, and I know her former self would beg me not to try to keep her going if Nature were finally trying to let her go.

 

[Jess26]

I echo all that Witzend has said.

 

[Claire]

My experience when my mum came to the end was almost exactly the same as Witzend' s. I sat with Mum through her her last days and she too was very peaceful, indeed serene. Her doctor had said a week or two before, when we had said no to a peg feed, that they are designed to prolong life, but in her case it would only prolong the dying process. This is a very difficult time for you and I sympathise and wish you strength and peace in whatever decision you make.

 

[lilysmybabypup]

It's our instinct to preserve and protect those we love, and denying them such basic needs seems harsh and cruel. Sadly, I've been exactly where you are. My dear dad stopped eating, and would only drink. We had a meeting with the clinical team in the nursing home and they were kind but honest. He was dying, his life was no longer tolerable. This is the time for compassionate palliative care, the body begins to shut down and the kindest option is to keep them comfortable and free from pain. It broke our hearts but extra fluids actually begin to drown a body in that state, and the procedure for peg feeding is surgical and just too much.

Dad began to sleep day and night and it was a welcome peace and quiet after many difficult years of despair for us all. It was a time for sitting with him, holding his hand, speaking softly and telling him how much he was loved. These are precious and bittersweet moments. We lost Dad August 2013 and it is the worst pain and despair I've ever endured but I know he would never have wanted to continue living in such a way.

It's not what you want to hear, I'm sure, but it's the wise and compassionate choice. I wish you wisdom, and strength, and a peace within as you make such difficult choices.

Stephanie, xxx

 

[min88cat]

We went through exactly the same with my MIL. We were advised in late August/early September that we were on borrowed time. We asked the NH to keep her comfortable, and pain free and offer drinks as and when they could, but not to force it upon her. They had a syringe driver ready to use if necessary and she had patches for pain relief and to reduce the fluid on her chest.

She did occasionally take a sip, but it became apparent during the hours before her final passing in mid October, that anything she had taken orally had remained in her stomach for weeks. We were told it was because her body was gradually shutting down. Despite all this, she was remained peaceful to the end, and we were able to be with her, which is exactly how we would have wanted it. The thought of peg feeding never entered our heads, she had had enough.

 

[Pickles53]

I can only agree with what others have said. Both MIL and my own mum gradually stopped eating and drinking and my mum slipped quietly away just there weeks ago. Almost the last coherent thing she said was to one of the carers trying yet again to persuade her to take a drink, and that was 'get lost'! Just a flash of the old mum there, but enough to confirm what had seemed obvious for more than six months, and what she had been saying openly for longer; she didn't want to be here anymore.

It was much more quiet and private to spend time with her in her own room in peace and comfort than in the clamour of a busy hospital.

None of this takes away the pain of facing these decisions and in the end you must do what you feel is right for all of you. Wishing you strength and comfort. Xxx

 

[Nebiroth]

Hi,
My wife and I care for my mum who is 87 and was described yesterday by our GP as being in the final stages of dementia and "soon to die."

My mum can only now take liquids and is bedridden. We asked the GP what to do once she stops eating and drinking completely and he advised us that there was not anything that could be done. Suggestions from us such as admitting her to hospital and having her put on a drip were dismissed.

Neither of us want to see mum starve to death or dehydrate. Is there anything that can be done ? Are hospitals obliged to admit her ?

Thanks for any advice.

Unfortunately I think the doctor is right - although perhaps it is a case of nothing should be done, rather than can be. If someone is not eating or drinking at all, then of course there may be alternatives such as intravenous fluids via a drip or PEG feeding tube used (this is where a tube is inserted directly into the stomach, surgically, via the abdomen, bypassing the mouth, food pipe etc)

However, in my own personal view it then becomes a question of whether these procedures are really preserving life or merely prolonging the process of death.

It is one thing to use PEG feeding tubes in a person who has (for example) had surgery and is temporarily unable to eat normally - but who also stands a good chance of either recovery or a good quality of life otherwise. It is something else when a patient has no hope of any recovery.

Certainly, it is a difficult decision for doctors, however, I think it quite likely that they would not regard it in the interests of their patient to use what are known as "heroic measures" simply to extend the life of someone in a coma or totally unresponsive who will never get better. Obviously PEG tubes and the like involve their own risks, complications and discomfort to the patient. And, awful as it may seem, there is also a question of whether it represents a wise use of limited resources.

I suspect that in your mum's case it would become a question of providing palliative care, which seeks to maximise quality of life and minimise discomfort as it's priority. Palliative care can be provided either at home or in hospital (or sometimes in a hospice, which specialises in it). A palliative care nurse or care team are trained in things like pain relief and other measures such as using special moisturisers for mouth and lips etc.

 

[fizzie]

You could ask for admittance into a hospice. They will support your family through the process as well as making it as peaceful as possible without any pain

 

[timshaw]

Thank you !

Many thanks to all who have posted comments. These are very helpful and supportive.

 

[Neph]

Mum is in pretty much the same situation, I know it's hard to let go but sometimes it's for the best.