No longer eating or drinking

[Ester]

This is my first post… my lovely mom is 85 and has vascular dementia. She has suffered with this awful disease for many years. She still remembers who we are and has some limited mobility. She is being cared for in a wonderful care home who informed us just after Christmas that she is eating and drinking much less than normal. Two weeks ago she was admitted to hospital as she hadn’t eaten or drank for a few days and so was dehydrated. She was treated with antibiotics and given fluids and sent back to the care home. She is now back in hospital and exactly the same is happening.. fluids and antibiotics… but mom is still not eating or drinking herself and she’s so confused.

A nurse has said that they hospital won’t keep giving her fluids and the care home may be told on discharge that she shouldn’t continue to be readmitted to hospital.

So what next ? Nobody will give us any answers.. can mom be discharged back to the care home ? Should she go to a nursing home ? Should we be prepared for the worst ?

 

[canary]

Hello @Ester and welcome to Talking Point, although I am sorry that it is such sad circumstances that brings you here.

I remember this stage very well with mum.
When someone with dementia reaches End of Life what happens is that their body shuts down slowly, over weeks, or sometimes even months, and the amount that they eat and drink reduces until, eventually they do not eat or drink anything at all. If there is nothing else going on (it sounds like an infection has been ruled out) then it really does seem like this is what you are looking at. My mum was also sent to hospital where they rehydrated her with IV fluids and then sent her back to her care home. On her return, I spoke to her GP and it was agreed that she would not be sent back to the hospital. She passed away a fortnight later in her care home.

I think you need a very open and frank conversation with someone at the hospital. Perhaps you could arrange to speak to the consultant about your mum.
If it is agreed that she is at End of Life, she wouldnt necessarily need a nursing home - mums care home was perfectly able to care for her during this time and they got in the district nurses to organise pain relief for her. It depends on how much experience the care home has with this - they may feel that they cannot deal with it. If this happens it would probably be best for your mum to move to a nursing home.

Im so sorry
((((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))

 

[Ester]

Hello @Ester and welcome to Talking Point, although I am sorry that it is such sad circumstances that brings you here.

I remember this stage very well with mum.
When someone with dementia reaches End of Life what happens is that their body shuts down slowly, over weeks, or sometimes even months, and the amount that they eat and drink reduces until, eventually they do not eat or drink anything at all. If there is nothing else going on (it sounds like an infection has been ruled out) then it really does seem like this is what you are looking at. My mum was also sent to hospital where they rehydrated her with IV fluids and then sent her back to her care home. On her return, I spoke to her GP and it was agreed that she would not be sent back to the hospital. She passed away a fortnight later in her care home.

I think you need a very open and frank conversation with someone at the hospital. Perhaps you could arrange to speak to the consultant about your mum.
If it is agreed that she is at End of Life, she wouldnt necessarily need a nursing home - mums care home was perfectly able to care for her during this time and they got in the district nurses to organise pain relief for her. It depends on how much experience the care home has with this - they may feel that they cannot deal with it. If this happens it would probably be best for your mum to move to a nursing home.

Im so sorry
((((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))

Thank you so much for your response.. you have told me more in your reply than any doctor has. It’s comforting to know that mom could possibly stay at her care home.. I know the staff there well so I know she’d be cared for with love.

As for an open and frank conversation with the hospital.. that’s easier said than done, they barely tell us anything.. I’ll keep trying.

 

[canary]

If the hospital sends her back to her care home then have that open and frank conversation with her GP. I was so glad that I did. I didnt want mum to keep going through that (metaphorical) revolving door between the care home and the hospital with nothing being done apart from rehydrating her. Once it was decided that mum was at End of Life, the GP organised everything that was needed. Im not going to lie - it was quite harrowing, but she passed away peacefully in a place she recognised and tended by people she knew who treated her with gentleness and love.

I do hope that your mums care home will accept her back
xx

 

[CAL Y]

@Ester . You have my sympathy and I would echo what @canary says.
One of the worse things for me was when my husband wouldn’t eat.
Food is a very emotive subject. Feeding our relatives etc is a way we show our love and it’s very upsetting when you think they are starving.
This isn’t the case. It’s the bodies natural shutting down towards the end of life.
They are not feeling hunger or thirst so try not to feel guilty. Easier said than done I know.
Im thinking of you at this difficult time.x

 

[Lynmax]

I have had that conversation with the care home gp and it’s very clear in mums medical notes that she is not to go to hospital again for rehydration, the care home will look after here with support from District Nurses when she is EOL. We discussed treatment options that can be offered at the home, such as pain relief, mouth swabs etc to keep her comfortable.

However, I did have to agree to her going to hospital earlier this year for an X-ray and against my wishes, she was admitted and put on a drip. It took me five days of arguments and the support of the hospitals Dementia Matron to get mum back to her care home. Unfortunately these type of agreements get over ruled by consultants at the hospital - I will strongly resist her going to hospital again.

Fortunately, after a course of antibiotics for a septic bed sore, Mum is now eating and drinking really well, she’s drinking more than she used to which is amazing! But I am aware that these problems will arise again but now I am confident that the care home, District Nurses and her GP will look after her.

 

[lollyc]

In my experience you have to make the first move - most medical professionals are not going to suggest no treatment (that doesn't mean no palliative care), but if you bring it up, they are more than happy to follow your lead. The difficulty, of course, is that leaves family / carers making life and death decisions, which we don't feel qualified to do.

 

[nitram]

In my experience you have to make the first move

I used the phrase 'kept comfortable and pain free'.

 

[Scarlet Lady]

Hi, @Ester . I’m so sorry for what you’re going through. It sounds so familiar to me. While I agree with what @canary and others have said, it’s not that easy to have a ‘frank’ chat with anybody, especially the GP, who often does not want to be involved at all. I found that absolutely NOBODY , from the carers, to the hospital, to the GPS , to the care home, would tell me anything useful at all about my aunt’s state of health. They wouldn’t even divulge what treatment she had (or hadn’t had). And this, I have to say, was nothing to do with my right to know. All protocols were in place. They simply do not want to tell you anything
My aunt died alone in a care home in January. She’d been placed there for assessment after a crisis which required hospitalisation which was handled appallingly by the NHS. I was unable to see her in the last three weeks of her life, because, as usual, the home was in lockdown. This seems to be a permanent state, now.
Consequently, I have no idea what her state of mind was when she died.. I was the only person she had, so I truly hope that she didn’t feel abandoned. I’ll never know, of course. But the care home insist that she was ‘fine’ to the end, when I now know that wasn’t true. I wish the healthcare professionals would be open and honest with carers and loved ones. I really don’t know why they aren’t , except perhaps for the fear of litigation.

 

[lollyc]

Hi, @Ester . I’m so sorry for what you’re going through. It sounds so familiar to me. While I agree with what @canary and others have said, it’s not that easy to have a ‘frank’ chat with anybody, especially the GP, who often does not want to be involved at all. I found that absolutely NOBODY , from the carers, to the hospital, to the GPS , to the care home, would tell me anything useful at all about my aunt’s state of health. They wouldn’t even divulge what treatment she had (or hadn’t had). And this, I have to say, was nothing to do with my right to know. All protocols were in place. They simply do not want to tell you anything
My aunt died alone in a care home in January. She’d been placed there for assessment after a crisis which required hospitalisation which was handled appallingly by the NHS. I was unable to see her in the last three weeks of her life, because, as usual, the home was in lockdown. This seems to be a permanent state, now.
Consequently, I have no idea what her state of mind was when she died.. I was the only person she had, so I truly hope that she didn’t feel abandoned. I’ll never know, of course. But the care home insist that she was ‘fine’ to the end, when I now know that wasn’t true. I wish the healthcare professionals would be open and honest with carers and loved ones. I really don’t know why they aren’t , except perhaps for the fear of litigation.

I sometimes wonder whether the medical profession see death as a failure? Treat, treat, treat, deny, deny, deny, and perhaps it won't happen?
Let's face it, we will all die. But better a "good" death (perhaps sooner than if medicated to the hilt), than a prolonged miserable one, with no quality of life.
I think I'm probably quite a blunt person, and having worked with animals for many years, where euthanasia is an option, I didn't have a problem discussing the subject of management of end of life etc. and not prolonging it unneccessarily. However, there will be many people who find it a difficult subject to broach, made even harder by an experience like yours @Scarlet Lady. Somewhere in all this it seems to have been forgotten that is the patient that matters.

 

[Ester]

Thank you all for your comments and sharing your experiences. After asking many questions, we found a really lovely palliative nurse at the hospital who finally gave us some open and honest answers. Mum has now been discharged from hospital and is receiving end of life care at her care home (thank you @canary for letting me know this was possible, I feel much more at ease knowing she is being cared for in familiar surroundings and by people who genuinely care for her). Mum still isn’t taking in any fluids so sadly it’s just a matter of time ?

 

[canary]

I am so glad that you found someone at the hospital who would give you honest answers.
Im even happier that her care home have accepted her back.
Yes, it is only a matter of time now, but be prepared that this can go on longer than you would think possible, Mum went 17 days with no food or fluid whatsoever. I did not know how she kept going. So make sure you look after yourself during this time, even though it may not be that long for your mum.
(((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))

 

[Ester]

I am so glad that you found someone at the hospital who would give you honest answers.
Im even happier that her care home have accepted her back.
Yes, it is only a matter of time now, but be prepared that this can go on longer than you would think possible, Mum went 17 days with no food or fluid whatsoever. I did not know how she kept going. So make sure you look after yourself during this time, even though it may not be that long for your mum.
(((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))

17 days sounds like such a long time for mom to be in this awful way… feels awful too having such mixed emotions.. not wanting her to suffer yet not wanting to lose her either. Tough times x

 

[canary]

not wanting her to suffer yet not wanting to lose her either.

Yes, its exactly this.
It is a twilight time .......... living in limbo
Be prepared for the physical changes - the gaps between breaths, the way the limbs go cold and the skin mottles - these things happen in the last couple of days. She will drift in and out of consciousness, but will still be able to hear, so talk to her, read to her, play her favourite music. Say the important things - I love you, Im sorry, thank you and tell her it is OK to go. If she is religious alert her local faith leader. Words can be a great comfort.

You are into the last, long vigil. Make sure you eat and sleep
xx