Mum end of life but now improving!

[florri55]

Hello everyone

I am struggling to understand what is happening to my mum after I was told by her GP she was end of life. She is late stage dementia after 6 years, 2 years of which she has been in a care home. She has been in bed for the past 6 weeks, mostly unresponsive but still eating and drinking when prompted by her carers. We were supposed to go on holiday 2 weeks ago but cancelled this dreading the worst however today when I visited, she was out of bed, dressed and sitting up in her wheelchair and although she has no idea who I am, did respond in her own way.
Has anyone experienced this with their loved one? I am totally gobsmacked as I have been trying to get my head around losing her and expected this would be days not weeks or even months. Her GP says this sometimes does happen but how can someone be end of life when they have actually improved? I feel I am on a permanent rollercoaster!

 

[Mollygoose]

End of

Well at least she is still alive ! I am feeding my mother tiny bits at ounce ! Liquidised food and drinks because it's that or that's it she will be gone ! It's a bit of a challenge I'm afraid ! But we all know the alternative ! Don't we

 

[stanleypj]

I think we have to accept that estimating how long someone has left is not an exact science, in fact very little is predictable when it comes to dementia. It's not uncommon to read on TP that someone has supposedly reached the end of life stage some time (occasionally months) before but is still alive.

 

[canary]

Yup, that happened to me earlier this year following pneumonia.
She stopped eating and drinking and the carers thought she had given up. I posted on here, got a huge amount of support - and then she perked up!

She has just finished her sixth round of antibiotics this year and at one stage she got oral thrush. A friends says I should rename her Zebedee!! Yes, its a constant roller-coaster

 

[cragmaid]

My late Mum went through three or four end of life sequences.....including Last Rites.
I was convinced that outsiders thought I was telling porkie pies ( lies) about her health!!

 

[nannylondon]

Yes I have just been through this with my OH he had pneumonia was told this was likely to be the end now a few weeks later he is sitting up in the lounge in his care home.
He can't do anything for himself but he was tapping his foot to the music today.

 

[Padraig]

If I had taken notice of what doctors said and entries by 'experts' in my wife's medical records, she would not have survived four more years and nine months.

When I took her from a Nursing Home the doctor insisted I not attempt to feed her as she was dying. Our Daughter agreed with the doctor, but I ignored both and began feeding her with a syringe at first. Soon she was eating plenty of food and moved from under six stone to over eight stone.

A staff member enter in medical records "Husband is aware his wife is dying".

I still retain copies of her records, plus photos and DVDs I made over her final years. Stanley sums it up well.

 

[Gwendy1]

I agree, all we can do is take each day as it comes. I never know how dad is going to be when I visit, from day to day. I enjoy the good days, cry on the bad ones. He has end of life meds in the home incase he needs them since his pneumonia in January. Today, he couldn't walk, yesterday he could. All I want is for him to be pain free and not distressed for however long he's still with me. It's very hard, I know. X


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[Timeout]

Yes, mum was discharged from hospital at Christmas on end of life. She is now stable and appears quite happy and medically well apart from the usual severe dementia symptoms. It appears to be quite common for there to be a number of 'rallies' on this journey.

 

[eiffel]

i agree ,i think it is best to take each day at a time and enjoy her time with you.

Yes, mum was discharged from hospital at Christmas on end of life. She is now stable and appears quite happy and medically well apart from the usual severe dementia symptoms. It appears to be quite common for there to be a number of 'rallies' on this journey.

.

 

[LYN T]

When I was told that Pete was approaching end of life I didn't expect him to survive another 6 1/2 months. He carried on eating (allbeit much less) and survived more and more infections-mostly UTI's. He didn't even pass in the 'usual' way as he kept on eating/drinking til a minute or so before he died. What I'm trying to say is that everyone is different and they pass when they are ready! It's heartbreaking to witness though and I send my sympathy to anyone who is experiencing this.

Love,

Lyn T XX

 

[Maggie42]

Hi All,
My husband is deemed "end of Life" and we have been told three times this year, with different infections, that he is unlikely to pull through, but he sure is a fighter as he is still with us although very poorly, bedridden and only eating puree food. It is a difficult time for everyone and thank you all for sharing your similar stories.
With my very best wishes.
Mags