MOM later stages of Alzhiemers

[Greg6255]

Hello , my mom is in the later stages of Alzheimers. However she has quit eating on her own , and will eat and drink if fed. Just today the Home Nurse said it would be better to quit giving her food an water, as we are just prolonging the inevitable. VSED they call it. I'm having hard time with this as she is still able to speak, and react, talk. She still laughs, smiles.... Likes to give hugs and kisses... and can respond to questions sometimes.. So why would anyone want to watch her starve or dehydrate.. to hasten EOL. She does have trouble swallowing due to Thrush from lack of Saliva. But she still for the most part willingly will eat if fed, and will hold a cup and drink. However may not be a lot. I think for the home nurse to suggest that we should just let her dehydrate is wrong. .

 

[hope77]

Please help!!!!!
My loved one ate so well on Thursday 12th-10-17 then Sunday they're deemed to be on end of life care. It all happened so suddenly, theres a palliative nurse in the nursing home.

They've received at least 200g of morphine and 3 injections of diazepram. No food or water for 9 days, still strong pulse with a syringe drive. Chyne stoke breathing present and 'apprent' tumor in stomach although this has not been medically tested nor has been seen by any hospital.

On Monday 16-10-17 GP said 24 hrs. Now nearly 24-10-17. Has been "sleeping" since if conscious becomes agitated moving legs and shooting upwards. Nurses in care home give more drugs to calm him down blaming us the family for it therefore cutting visits to only 2 people per time. Or that they're "fighting"


Absolutely no food or water. Only permitted a damp tooth brush with a wipe over the mouth. Inside of mouth so dry skin becoming yellow and peeling.

I have a horrible feeling it's been 9 days if they're that weak 9 going on 10 days with no food or water wouldn't of lasted?

What can I do? Is there anyway they can be saved?!!!!

 

[canary]

Hello @Greg6255 and @Fkdementia77

End of life can be harrowing to watch and at the end the body is closing down gradually, so is unable to process food and drink. There is the feeling that if only you could get them to eat and drink then all will be well, but it doesnt work like that - they are not dying because they are not eating; they are not eating because they are dying.

My mum died in April and did not eat or drink anything for 17 days. Up until the last 48 hours she was up, sitting in the lounge and able to talk and interact with others. My son and DIL brought their young toddler to visit her 4 days before she passed away and I have a wonderful photo of mum and her great-grandson banging spoons on the table and laughing. No-one just seeing her at that stage would have known that she was on palliative care and actively dying.

Food should IMO always be offered, but not forced, until you reach the absolute end. At the end, because the body can no-longer process food/water it can actually cause pain.

Once you get to the stage of needing a syringe driver and there is Chayne Stokes breathing, then Im afraid that you are looking at hours. ((((((hugs)))))) Fkdementia77 - you are in the last long vigil. I pray that it is quick.

 

[hope77]

@canary

Thank you so much for your reply. My heart goes out to you, your family and your mother for having to go through that.

You were right, I was present with them today.
They opened their eyes stared at the ceiling with the biggest smile across their face from what I've witnessed from their 4 years of being in a residental home. A few deep breaths and gone.

My heart is shattered. Thank you again for your reply, I feel so much pain, sadness and guilt. But ultimately glad I was there to see that beautiful smile just before they passed.

Now unsure what to do with myself.

Hugs and love to all who've been effected by this horrible disease.

 

[LadyA]

@Fkdementia77 I'm sorry for your loss. That end of life vigil can be so harrowing. I'm glad the end was so peaceful.

 

[lemonjuice]

You were right, I was present with them today.
They opened their eyes stared at the ceiling with the biggest smile across their face from what I've witnessed from their 4 years of being in a residental home. A few deep breaths and gone.

That was wonderful for you.
My mother died on the 15th and much to my surprise after all the emergences we've had the past couple of years, this one was very different and ,yes it was 'peaceful' at the end too. For which I am so thankful. She'd been in a coma for a couple of days and just very gradually just stopped breathing and heart stopped beating.

Edit. It is so good after watching their harrowing state for so many years to have a 'positive experience' at the end.

 

[canary]

@Fkdementia77
Im sorry for your loss (((((hugs)))), but I am glad that you were there at the end.

Be gentle with yourself now - there will be lots of paperwork, phone calls and organisation to do and then there will be time to grieve.

 

[hope77]

@LadyA I really hope it was peaceful. Seems all like a blur, thank you for your message

 

[hope77]

@lemonjuice I send my love and condolences. This cruel disease is ruthless and heartbreaking. I hope they're in a better place now without the torment and cruelty that Alzheimers/dementia brings.

@canary I don't hold this responsibility its with the daughter, bless her soul, me and her were together at the end- she stayed the full 9 nights and 10 days only leaving for a few hours I hope I supported her aswell as she supported me

A big thank you to those kind enough to write, this really is helping me during this devastating time that I'm so sad to realise many of others have been through

 

[Aitchbee]

Hello , my mom is in the later stages of Alzheimers. However she has quit eating on her own , and will eat and drink if fed. Just today the Home Nurse said it would be better to quit giving her food an water, as we are just prolonging the inevitable. VSED they call it. I'm having hard time with this as she is still able to speak, and react, talk. She still laughs, smiles.... Likes to give hugs and kisses... and can respond to questions sometimes.. So why would anyone want to watch her starve or dehydrate.. to hasten EOL. She does have trouble swallowing due to Thrush from lack of Saliva. But she still for the most part willingly will eat if fed, and will hold a cup and drink. However may not be a lot. I think for the home nurse to suggest that we should just let her dehydrate is wrong. .

Hello Greg6255. I can sympathise with your dilemma. Mum is at end stage dementia. She started having swallowing difficulties at Christmas last year and we were told she was at EOL. We were told to offer her pureed food and thickened drinks but not to push them if she didn't seem to want them. She is still with us. She improved considerably in the spring but in recent weeks has deteriorated again. We sometimes wonder whether we are being unkind in prolonging her life that, from our perspective, seem to have little quality to it. However, she does not seem unhappy and usually seems to want to eat and drink when it is offered. Sorry, I haven't really got an answer but can identify with how you feel. It doesn't seem right to withold food and drink when they are willing to take it. Have you discussed this with your Mum's GP?

 

[Aitchbee]

@canary

Thank you so much for your reply. My heart goes out to you, your family and your mother for having to go through that.

You were right, I was present with them today.
They opened their eyes stared at the ceiling with the biggest smile across their face from what I've witnessed from their 4 years of being in a residental home. A few deep breaths and gone.

My heart is shattered. Thank you again for your reply, I feel so much pain, sadness and guilt. But ultimately glad I was there to see that beautiful smile just before they passed.

Now unsure what to do with myself.

Hugs and love to all who've been effected by this horrible disease.

So sorry for your loss but glad that the end was peaceful xx