• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

How will I know?

Sarah127

New member
Jan 13, 2020
1
My nans been admitted with UTI in hospital one week ago. She’s not mobile with a zimmer anymore so uses a hoist. She’s on an air mattress due to being unable to move herself for pressure relief. She can talk slightly still, answering questions and mentioning passed away relatives as if they were here. She is having slight trouble swallowing now and is refusing fluids food and meds. She will eat/drink small amounts for myself and sister. Are we prolonging the inevitable? Can this be near end of life when she can still talk small amounts? Nurses say this is the progression and won’t IV any fluids.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,399
Kent
Hello @Sarah127. Welcome to Dementia Talking Point

Does your nan seem comfortable or is she agitated? I think that is the guideline for you. If she seems comfortable then her needs are being met. If she seems agitated it could be a different matter.

My husband had some language until the day he died. He knew our son and he knew me. He could respond with yes and no to simple questions and recognised our voices.

We moistened his mouth with small sponges and did feed him fluids with an oral syringe. A couple of days before he died one of the carers was delighted when he accepted a spoon of mashed potato and gravy.

I don`t know if your nan is at the end of her life or if she will rally. I understand how upsetting it is for you to watch without knowing. All you can do is be there for her and make sure she isn`t experiencing any distress.
 

canary

Registered User
Feb 25, 2014
11,372
South coast
Its often quite difficult to tell when people with dementia are at End of Life.
I was told three times that my mum was at End of Life when she stopped eating and drinking - once after a stroke, once after pneumonia and the third time after oral thrush. Each time she stopped eating and drinking, but then rallied and started again. So, I think you have to wait and see. I think it is important to offer food, but if it distresses her, or she refuses, then dont push it.
 

Life291244

New member
Jan 17, 2020
3
I totally get what your saying, Mum was diagnosed 3 years ago with mixed dementia, lewy bodies and frontal temporal. She has significantly deteriorated over the last 3 -4 weeks to the extent she wasn’t responsive yesterday morning. The doctors had seen her twice in 3 days and I was asked to agree to DNR which I did. I called in to see mum yesterday morning and she was unresponsive. She hasn’t eaten or taken enough fluids for nearly 2 weeks and on top of that was fighting an infection. She is unable to swallow tablets so not getting the medication she needs where there isn’t a liquid alternative. She is in residential care and the careers are brilliant but I felt I had to make the decision to call an emergency doctor out to see her ( who was on annual leave). I called 111 who sent an ambulance out to her. They took her to hospital and did blood test as we thought she was dehydrated. She was very agitated and distressed. The ( very young) doctor basically said “ I don’t know why she is here we won’t treat patients with late stage dementia, take her home and keep her comfortable”. I found this to be a very cold response I was upset and angry, I took her home. I’m on tenterhooks waiting for something to happen, and the worst thing people keep asking how she is and I just want to shout SHES DYING WHAT DO YOU WANT ME SAY!!!
 

Bunpoots

Volunteer Host
Apr 1, 2016
3,822
Nottinghamshire
I think such callousness from that young doctor was very wrong and I’d be tempted to complain @Life291244.

I’m glad the carers are being supportive and I hope they can keep your mum comfortable. I’ve not experienced end of life as my dad died suddenly but others here know what to expect.
 

canary

Registered User
Feb 25, 2014
11,372
South coast
Hello @Life291244
I answered your other post on a different thread, but I had not realised that your mum was at this stage. Im assuming that no-one told you she was at end of life. It would have saved you a lot of heart-ache if you had known, I think. Hospitals are not the best places for people with dementia and it is a much nicer environment in a care home to pass away.

Both my MIL and my mum died from dementia in a care home and both were beautifully looked after and their passing was peaceful. I was there on both occasions. When someone dies from dementia what happens is just as you described - their bodies shut down over several weeks and they stop eating and drinking and eventually they become unresponsive. The main thing at this point is to make sure that they are given pain-killers and other medication to keep them comfortable, so that they can pass away peacefully. The medication is given is either skin patches, injections or a syringe driver. A syringe driver is a little box containing the medication which is delivered slowly (drop by drop) by a little needle that goes under the skin to make sure that pain is kept under control.

This stage can last anything from a few hours to several days, so it may be that by the time you read this your mum has already passed. If she hasnt, though, then there are some things that you can do. The carers can give you little sponges or brushes to moisten her mouth and you can put salve on her dry lips. You can also put moisturiser on her skin to make her more comfortable. Although she is unresponsive hearing is the last thing to go, so now is the time to say the important things - I love you, thank you, Im sorry and (if appropriate) I forgive you. Talk to her and play her favourite music

This is a tough time waiting in limboland
(((((((((((((((((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))))))))))))))))))))))
 

Life291244

New member
Jan 17, 2020
3
Hello @Life291244
I answered your other post on a different thread, but I had not realised that your mum was at this stage. Im assuming that no-one told you she was at end of life. It would have saved you a lot of heart-ache if you had known, I think. Hospitals are not the best places for people with dementia and it is a much nicer environment in a care home to pass away.

Both my MIL and my mum died from dementia in a care home and both were beautifully looked after and their passing was peaceful. I was there on both occasions. When someone dies from dementia what happens is just as you described - their bodies shut down over several weeks and they stop eating and drinking and eventually they become unresponsive. The main thing at this point is to make sure that they are given pain-killers and other medication to keep them comfortable, so that they can pass away peacefully. The medication is given is either skin patches, injections or a syringe driver. A syringe driver is a little box containing the medication which is delivered slowly (drop by drop) by a little needle that goes under the skin to make sure that pain is kept under control.

This stage can last anything from a few hours to several days, so it may be that by the time you read this your mum has already passed. If she hasnt, though, then there are some things that you can do. The carers can give you little sponges or brushes to moisten her mouth and you can put salve on her dry lips. You can also put moisturiser on her skin to make her more comfortable. Although she is unresponsive hearing is the last thing to go, so now is the time to say the important things - I love you, thank you, Im sorry and (if appropriate) I forgive you. Talk to her and play her favourite music

This is a tough time waiting in limboland
(((((((((((((((((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))))))))))))))))))))))
Hello @Life291244
I answered your other post on a different thread, but I had not realised that your mum was at this stage. Im assuming that no-one told you she was at end of life. It would have saved you a lot of heart-ache if you had known, I think. Hospitals are not the best places for people with dementia and it is a much nicer environment in a care home to pass away.

Both my MIL and my mum died from dementia in a care home and both were beautifully looked after and their passing was peaceful. I was there on both occasions. When someone dies from dementia what happens is just as you described - their bodies shut down over several weeks and they stop eating and drinking and eventually they become unresponsive. The main thing at this point is to make sure that they are given pain-killers and other medication to keep them comfortable, so that they can pass away peacefully. The medication is given is either skin patches, injections or a syringe driver. A syringe driver is a little box containing the medication which is delivered slowly (drop by drop) by a little needle that goes under the skin to make sure that pain is kept under control.

This stage can last anything from a few hours to several days, so it may be that by the time you read this your mum has already passed. If she hasnt, though, then there are some things that you can do. The carers can give you little sponges or brushes to moisten her mouth and you can put salve on her dry lips. You can also put moisturiser on her skin to make her more comfortable. Although she is unresponsive hearing is the last thing to go, so now is the time to say the important things - I love you, thank you, Im sorry and (if appropriate) I forgive you. Talk to her and play her favourite music

This is a tough time waiting in limboland
(((((((((((((((((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))))))))))))))))))))))
Thank you, for your kind words. I only joined this morning and it has already been a great help and support.........i just don't want her to suffer,
 

canary

Registered User
Feb 25, 2014
11,372
South coast
i just don't want her to suffer,
Of course not. Work with the carers as they will have seen this before and watch out for agitation that might indicate that the pain killers are not sufficient.
This is the last long vigil and time seems to stand still, but the end will come
More (((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))
 

millalm

Registered User
Oct 9, 2019
63
@Life 291244 I'm so sorry to read your posts, like @canary I have been down the same road on two occasions with my Mum, each time I thought she was at the end of life and each time she rallied. I have said goodbye to her so many times 'might in case' she doesn't survive until the next day, so I understand exactly the emotions you are feeling. @canary has given you good practical advice so I just wanted you to know you are not alone. Wishing you strength.
 

CWR

Registered User
Mar 17, 2019
112
My nans been admitted with UTI in hospital one week ago. She’s not mobile with a zimmer anymore so uses a hoist. She’s on an air mattress due to being unable to move herself for pressure relief. She can talk slightly still, answering questions and mentioning passed away relatives as if they were here. She is having slight trouble swallowing now and is refusing fluids food and meds. She will eat/drink small amounts for myself and sister. Are we prolonging the inevitable? Can this be near end of life when she can still talk small amounts? Nurses say this is the progression and won’t IV any fluids.
I can totally sympathise with you.Once my mother went into hospital with a cold which immobilised her and made her lose the ability to eat or even to drink much, it was a waiting game. Have you asked the doctors? With mum, they took bloods daily and they only contacted me to discuss options once the bloods showed that the organs had started to fail. It's a very tiring time, but all you can do is be there as much as you can, and hold her hand. I am sure she will know that you are there and take comfort from that.
 

Speedster

New member
Jan 19, 2020
1
My nans been admitted with UTI in hospital one week ago. She’s not mobile with a zimmer anymore so uses a hoist. She’s on an air mattress due to being unable to move herself for pressure relief. She can talk slightly still, answering questions and mentioning passed away relatives as if they were here. She is having slight trouble swallowing now and is refusing fluids food and meds. She will eat/drink small amounts for myself and sister. Are we prolonging the inevitable? Can this be near end of life when she can still talk small amounts? Nurses say this is the progression and won’t IV any fluids.
Hi so sorry
My nans been admitted with UTI in hospital one week ago. She’s not mobile with a zimmer anymore so uses a hoist. She’s on an air mattress due to being unable to move herself for pressure relief. She can talk slightly still, answering questions and mentioning passed away relatives as if they were here. She is having slight trouble swallowing now and is refusing fluids food and meds. She will eat/drink small amounts for myself and sister. Are we prolonging the inevitable? Can this be near end of life when she can still talk small amounts? Nurses say this is the progression and won’t IV any fluids.
Hi, so sorry to hear about your nan. My father has mixed dementia and has lost over a stone since entering an EMI home. He is reluctant to eat even when assisted. Friends who have visited him keep telling me he needs to go to hospital and be on a drip, but that’s not he needs. He’s been seen by a doctor and been prescribed a complan type drink to help him gain weight. From what I’m reading there’s not much else they can do and I wonder if we are now end of life. I know everyone is different but any comments would be appreciated.