the long wait for something

[Jane3]

Does end of life ever end, four weeks since discharge from hospital with AD at end of life , weaning spoons of porridge and sips of liquid only since the 23rd of Feb .
Always a joy when mum opens her eyes and chats (nothing that makes sense).
I have fantasy that she will wake up put her teeth back in and eat a portion of fish and chips...as that is where she was in February as well as being mobile and Continent. I know that is not going to happen.
Meanwhile all our lives on hold and treasuring every minute we get, though question the quality of life she has,,,and prying that she can pass peacefully.
lots of sleep now no idea if that is an indicator of anything?
My thoughts go out for all families that are in this position.

 

[Bunpoots]

Thinking of you and your family @Jane3

 

[sue31]

Does end of life ever end, four weeks since discharge from hospital with AD at end of life , weaning spoons of porridge and sips of liquid only since the 23rd of Feb .
Always a joy when mum opens her eyes and chats (nothing that makes sense).
I have fantasy that she will wake up put her teeth back in and eat a portion of fish and chips...as that is where she was in February as well as being mobile and Continent. I know that is not going to happen.
Meanwhile all our lives on hold and treasuring every minute we get, though question the quality of life she has,,,and prying that she can pass peacefully.
lots of sleep now no idea if that is an indicator of anything?
My thoughts go out for all families that are in this position.

Ask a few very direct questions to the nursing staff or doctor that sees your mum.
They told us on the Monday that mums passing was extremely close, somehow she held on till the Thursday evening.
I appreciated having that (very blunt on my questions) conversation as I was more able to process the information on the procedures mum would go through when it did happen than if they had tried telling me at the time of her passing. I didn’t want her just carted off in some random private ambulance - but that’s just my mindset, I needed to know.
I knew the funeral firm we used for dad had their own chapel so mum went straight there.

It’s like limbo land, a horrible nightmare, utter dread of her leaving us but there is a kind of relief she’s finally at peace.

 

[Jane3]

Thank you I have already had the conversation with the home about contacting the funeral directors as like you mum will go to the same one that dad did.
As for timing the Doc and the staff just say when it happens I see them and talk to them every day and every night. i am sure they will be glad to see the back of me.
Yes dreading the day and wanting her to be at peace , we knew it was coming but its still too soon.

 

[Woody54321]

Just received the dreaded phone call from the Home, Doctor has advised removing meds and catheter and giving injection pain relief as required. Mum not swallowing food but some liquid and Nurse said they will keep her comfortable and offer food and liquid but that she has entered the end of life stage. I knew it would happen and feel a mixture of relief for mum and guilt that I feel that way. Such a hard process for us all. xx

 

[Grannie G]

@Jane3 and @Woody54321

Such a difficult time for both of you. You want the suffering to be over but you will be grieving when it comes

 

[LewyDementiaCarer]

Just to say we are right there with you, seemingly around the same stage, thinking of you too. treasuring every moment that is left, and hoping for peaceful passing when it comes.

 

[sue31]

Just received the dreaded phone call from the Home, Doctor has advised removing meds and catheter and giving injection pain relief as required. Mum not swallowing food but some liquid and Nurse said they will keep her comfortable and offer food and liquid but that she has entered the end of life stage. I knew it would happen and feel a mixture of relief for mum and guilt that I feel that way. Such a hard process for us all. xx

As long as she’s comfortable & calm it’s the best you could possibly wish for her. My mums passing was so much easier for us due to this.
My father was in agony - very traumatic end as a victim of the dreaded cancer.
I often think of all the poor families that have to deal with sudden/ accidental deaths & don’t have time to prepare & say goodbye like we have.
Not that it lessens any families sense of loss & unfairness at the hand they have been dealt.

 

[Jane3]

mum is on EOL after a fall . I was with her last night and she seemed quite lucid is this possible?

 

[Grannie G]

Anything is possible @Jane3
As long as your mother is comfortable make the most of your time with her.

 

[sue31]

mum is on EOL after a fall . I was with her last night and she seemed quite lucid is this possible?

Yes, mum was the same. I posted here too how odd it was, she was almost like the ‘old mum’ in short bursts for about 2 days.. Make the most of them - it’s been said on here by others that it’s very common near the end.

 

[Jane3]

im even more worried now, do i tell her she is dying? when she talks about getting stuff done at the moment I just reassure her that she has sorted everything and its ok. Or we will finish sorting it in the morning.
This has been a massive deterioration for her since a fall in late Feb , there was never any talk of dying other than the odd "I have lived too long"
Sometimes she wakes up scared and I just say I am there and its ok. What do I say now?

 

[Grannie G]

Just keep saying what you`re saying @Jane3 You are doing everything right,

If your mother still has hope or is planning for the future, allow it. Go along with everything she says. This will reassure her.

It`s really tough for you but you are making it easier for her.

 

[SeaSwallow]

Just keep telling her that you love her and that you are there for her @Jane3 . You could also talk about happy memories from the past. I don’t think that it’s necessary to tell her that she is dying unless she asks.
Wishing you strength at this difficult time.

 

[Jane3]

I am paralysed with guilt about the fall she only had one minor one then this one that has triggered the end of life, but that's a different matter that I am trying to put on hold. Desperate to hold it together for the times I am with her . When I am not I am shaking and feeling sick like I am now. I hope she doesn't ask she remembered the fall last night. I just say its ok and that she needs to sleep. I have to be able to be there for her

 

[SeaSwallow]

You have no need to feel guilty @Jane3 people who have dementia are prone to falls and they can happen in the blink of an eye.
Don’t forget to rest a little and to eat and drink, you need to keep your strength up. Take care.

 

[Jane3]

I am trying but it just seems too soon for mum to go, I think she must have been further along than we were told just two weeks before her fall. I am trying to breathe and hold it together.
this forum has helped thank you all.

 

[Jane3]

the pain relief worries me too mum is on Fentanyl patches (lowest dose i think) she also has a small dose of paracetamol top up, both of which I had to initiate. Last night she was exhibiting pain and was given the paracetamol after which she did go to sleep.
I am seeing mum more than they are, when they see her she does not seem to be in pain as it comes and goes. I am checking with the doc and the home today , but I think the next step is the morphine injections i am worried about asking for these too early.
sorry I just very scared and worried beyond belief

 

[sue31]

I am trying but it just seems too soon for mum to go, I think she must have been further along than we were told just two weeks before her fall. I am trying to breathe and hold it together.
this forum has helped thank you all.

Your travelling a very similar route to our one.
Ours too progressed to the end within about 6 weeks of a no injury fall. She was mobile, eating & continent prior to it.
Whatever she says/asks answer with what you know she would want to hear, reassuring her will keep her calm - which makes it easier for you too.

You will get through this, your doing amazing!!!!

 

[Jane3]

thank you so much yes it was a no injury fall around six or seven weeks ago (time and life has stood still for me) I have to get through I cant leave her now. these connections are vital for me