End of life

[Chaplin]

So my mum is 89, living with advanced dementia in a good nursing home. She is very frail and losing weight due to significant lack of appetite. We visit regularly and try and tempt her with old favourites which are hit and miss mostly. She can still swallow but is now holding food in her mouth and occasionally says she cannot swallow. We’ve agreed no SALT interventions as they will just prolong her agony! Due to her diabetes she doesn’t like any of the drinks they normally suggest.

Some of her non essential meds were removed, like her diabetes meds, because she was in danger of having a hypo due to lack of food intake. She’s more unsettled and requires morphine to settle and for pain. She’s lost ability to stand and walk but can still sit in a chair for a while without falling to the side. Until today she was mostly continent but woke with wet bedding.

A couple of weeks ago the GP issued end of life meds although as yet not been required or used!

It’s pitiful seeing her looking so thin and gaunt, I wonder how much more her body and mind has to take before this sorry disease takes what is left of her.

Not really any question, just wanted to express my sadness for her continuing ‘existence’ with what I see now as only fleeting moments of quality of life!

 

[Izzy]

I’m so sorry to read about your mum @Chaplin. It really is incredibly sad.

I hope sharing here will help you. We understand.

 

[Chaplin]

Thanks @Izzy I just wonder how her body clings on.

 

[Jessbow]

Its not a life, its an existance,so hard.

((hug))

 

[SeaSwallow]

This must be so hard for you, @Chaplin. Don’t forget to take care of yourself also.

 

[canary]

(((((((((((((((((((((((((hugs))))))))))))))))))))))) @Chaplin

You are now entering limbo land. Im afraid that her body will close down gradually and there will be some physical changes. Soon she will not want food or drink at all.
Dont forget to eat and sleep yourself

 

[Chaplin]

Its not a life, its an existance,so hard.

((hug))

Thank you, I don’t know how she still functions with what she consumes. I can only think it’s sheer will keeps her going.

 

[Chaplin]

(((((((((((((((((((((((((hugs))))))))))))))))))))))) @Chaplin

You are now entering limbo land. Im afraid that her body will close down gradually and there will be some physical changes. Soon she will not want food or drink at all.
Dont forget to eat and sleep yourself

Thanks, I feel like I’ve been here a long time, we see people come and go, read their stories and know we too will face similar. So many in her nursing home seemed more robust physically but expressed a desire to die and passed in such a short space of time. It piles on more guilt wanting it to be over for her when I’ve not heard mum voice she wants to die. The GP has maintained her mementine as she feels once that’s removed mum will probably take to her bed.

 

[Chaplin]

This must be so hard for you, @Chaplin. Don’t forget to take care of yourself also.

In limbo as @canary said. Wish I had mum’s strength 😔

 

[Jale]

So sorry to be reading this,

 

[hammang]

I so understand this. We lost dad in October with advanced dementia and now mum has deteriorated with her mixed dementia, partly due to grief. She sits uncomprehending and weeping; I feel one small illness will push her over the cliff. Her repeated mantra is she wishes she was dead. It really makes me rethink my own approach to mortality; as you say this is existing in pain, not living any form of vibrant fun life. Those days have long passed. Such an awful disease...

 

[Chaplin]

Thanks @hammang. Sorry to hear of the loss of your dad and the effect on your mum. It’s tough having one parent with dementia so can only imagine what life’s been like for you and your family.

My dad is still pretty sharp of mind but his body is his struggle. I wonder how quickly he will decline when mum passes. A couple of residents in mum’s nursing home expressed a desire to die and they passed in a relatively short time. My mum still thinks she’s going home to her parents, who are both long gone!

Agree, I’ve made it clear that if I am existing rather than living when my time is up, I don’t want to be kept alive. Dementia has had such an effect on the whole family I just hope we are all more patient as a result!

 

[canary]

We lost dad in October with advanced dementia and now mum has deteriorated with her mixed dementia, partly due to grief. She sits uncomprehending and weeping; I feel one small illness will push her over the cliff. Her repeated mantra is she wishes she was dead.

Im so sorry, that must be devastating to witness

I think the best way of handling this is to allow your mum to forget - people with dementia are frequently not able to process the information well enough to come to terms with it. You have told her that he has died, but dont tell her again and if she asks where he is use "love lies" to come up with a plausible explanation - maybe he is working late, or out shopping. This is hard to do while you are still so raw with grief yourself, though.

 

[hammang]

Thank you- the one thing she clings on to is that he’s died. In a way it would be kinder if she did forget but I guess after 65 years together that may never happen.
I like the expression love lies, I’ll tuck that one away for the future 🙏