Is the end near?

[BrianSausage]

Well we are well and truly on a rollercoaster ride and I’m not sure how much longer I can cope.
My mum was given a few weeks to live a month ago, and is in a nursing home, but also under the care of our local hospice.

In the last month we have had awful days, really awful days but also good days.
On a good day mum will eat a little sometimes (literally two spoonfuls of something) but on a good good day she has eaten nearly a whole meal. On a bad day she eats nothing.

Her fluid intake is also up and down. Some days she will only take sips of a drink and other days drink more.
She is doubly incontinent, and bed bound. She has vascular dementia and Parkinson’s disease.

On Friday she was awake when I visited and she chattered away about her personal effects. She told me she knew she didn’t have long left and is not frightened of dying, as she knew her mum and dad would look after her.

Today she was distressed and agitated, couldn’t open her eyes and kept crying for her mum. My husband asked her if she could see her mum and she said yes.

The hospice prescribed lorazepam and medazepam to help keep her calm, and the NH are having to give her this more and more regularly.

She has most of the end of life signs, and when she has a bad day I come home thinking that that could be the last time I see her.
And then when I visit the next day she’s sitting up in bed nattering away about nonsense and has eaten all her breakfast and a little lunch!!

I know no one can predict when she is likely to pass, but I feel like I’m in limbo and my emotions are all over the place. I feel like my life is on hold at the moment, and I’m not sure how much more I can take. And then I feel bad because this isn’t about me, it’s all about my poor mum.

Has anyone else experienced end of life like this? I just assumed she’d go downhill and that would be it. I don’t feel like I’ve prepared myself properly for the up’s and downs of this journey.

 

[NIKNOK]

Hello BrianSausage

I’m sorry to hear that your poor mum is at this stage - my dad has vascular dementia but is not yet at your mums stage.

This illness is terrible and I really feel your pain. I can’t offer you any solace but just wanted to say that I recognise how distressing this is, and send you hugs.

If only we had a magic wand. Deep down your mum knows she’s loved, keeping her safe and secure is difficult. This illness eats people alive.

Take care of yourself x

 

[echo66]

Goodness, you could be writing about the situation with my Mum! Except she is in a nursing home after having spent 4 months in hospital.

Mum has mixed dementia, alzheimers and vascular. She is doubly incontinent. Her fluid and food intake is very up and down, some days she has hardly anything, others she polishes off whatever is put in front of her. Her short term memory is absolutely shot, even though I visit her every day, she doesn't remember that I've been in to see her. Her perception of time of day is all over the place and we sometimes have some very weird and wonderful 'Alice in Wonderland' conversations. Mum was prescribed Lorazepam PRN, I made it quite clear that she was only to be given this as a last resort if she were so distressed it was affecting her breathing (she also has COPD).

No one has spoken to me about 'end of life signs' and I really don't know what stage she is at. Medical staff generally don't want to commit themselves to a timeline, as everyone is different. I just take each day as it comes and try not to think too far ahead.

You are right that it is a rollercoaster ride and I don't think anything really can prepare you for the ups and downs. Twice in the last 5 months I have been told that she wouldn't survive more than a few days, yet here we are nearly at the end of the year, and while I wouldn't say she is going strong, she is still with us.

I wouldn't wish this journey on anyone. It is a hard, long and lonely road. One that only another carer can possibly understand.

At least we have here.

 

[canary]

Im afraid that this up and down roller coaster is very common with dementia. I was told 3 times that mum would not survive, but she did. When she finally passed away she hung on for longer than I would have thought possible. I described it as living in limbo too. You want to move on, but you cant.

BTW @echo66 this is a factsheet about end of life, which might be helpful
https://www.alzheimers.org.uk/get-s...someone-reaching-end-their-life#content-start

 

[Goingitalone]

Im afraid that this up and down roller coaster is very common with dementia. I was told 3 times that mum would not survive, but she did. When she finally passed away she hung on for longer than I would have thought possible. I described it as living in limbo too. You want to move on, but you cant.

BTW @echo66 this is a factsheet about end of life, which might be helpful
https://www.alzheimers.org.uk/get-s...someone-reaching-end-their-life#content-start

Well we are well and truly on a rollercoaster ride and I’m not sure how much longer I can cope.
My mum was given a few weeks to live a month ago, and is in a nursing home, but also under the care of our local hospice.

In the last month we have had awful days, really awful days but also good days.
On a good day mum will eat a little sometimes (literally two spoonfuls of something) but on a good good day she has eaten nearly a whole meal. On a bad day she eats nothing.

Her fluid intake is also up and down. Some days she will only take sips of a drink and other days drink more.
She is doubly incontinent, and bed bound. She has vascular dementia and Parkinson’s disease.

On Friday she was awake when I visited and she chattered away about her personal effects. She told me she knew she didn’t have long left and is not frightened of dying, as she knew her mum and dad would look after her.

Today she was distressed and agitated, couldn’t open her eyes and kept crying for her mum. My husband asked her if she could see her mum and she said yes.

The hospice prescribed lorazepam and medazepam to help keep her calm, and the NH are having to give her this more and more regularly.

She has most of the end of life signs, and when she has a bad day I come home thinking that that could be the last time I see her.
And then when I visit the next day she’s sitting up in bed nattering away about nonsense and has eaten all her breakfast and a little lunch!!

I know no one can predict when she is likely to pass, but I feel like I’m in limbo and my emotions are all over the place. I feel like my life is on hold at the moment, and I’m not sure how much more I can take. And then I feel bad because this isn’t about me, it’s all about my poor mum.

Has anyone else experienced end of life like this? I just assumed she’d go downhill and that would be it. I don’t feel like I’ve prepared myself properly for the up’s and downs of this journey.

Hi there,
Yes, I’ve experienced this twice, my Mom and then mum in law. We lost MIL 6 weeks ago. She was diagnosed at end of life in early July and it was the end of October before she finally died. The rollercoaster you described is exactly the same as ours. We spent the whole summer with her on roatating shifts. I wonder if she held on so long because we were there so much?

I have no regrets. She died with family around her and knowing she was deeply loved. I did most of my grieving while I was there.

At the end my feelings were mixed...tremendous relief that she was at rest at last, but for some time I kept feeling that I’d got to go and be there for her.

I really feel for you. Every day I wondered how much longer I could take the strain of seeing her declining. Having seen the end of my own Mom’s life I knew what to expect at the end and I dreaded it. As it happened it was really peaceful.

Knowing that this roller coaster is common does help a little. You are not alone..many on this forum have experienced it and survived.

I wish your Mum a peaceful end and my only advice to you is to try to accept the situation as the gradual end to a precious life. Say all you mean to say to her during the more lucid visits and try to make her feel loved. Certainly don’t force her to eat or drink if she isn’t keen, just go with the flow. She will take her time. It is much more distressing for you than it is for her.

All the very best. Keep posting on here, you’ll find support day and night.

God bless.

 

[Alison66]

Hi Brian, I've been thinking about you and when I came on today I looked to see when you'd last posted. I see you've not since December 2nd.I don't know what's going on at the moment with you and your mum. I just want you to know that you are both in my thoughts and prayers.
Difficult time does not begin to describe what you, me and others on here are and have gone through.

Much love

Alison x

 

[BrianSausage]

Hi Brian, I've been thinking about you and when I came on today I looked to see when you'd last posted. I see you've not since December 2nd.I don't know what's going on at the moment with you and your mum. I just want you to know that you are both in my thoughts and prayers.
Difficult time does not begin to describe what you, me and others on here are and have gone through.

Much love

Alison x

Hi Alison

Thank you for your message and kind words.

Mum is still hanging on in there! Eating very little, drinking very little and urine out put is minimal. Very sleepy.
I seem to spend most of my time watching her sleep!!
She only weighs 5 and a half stone now.

Christmas was hard, but we took presents for her and made her room Christmassy. Mum didn’t know it was Christmas and slept through the festivities.

My New Years wish is that she receives her happy release soon.

Thanks again for getting in touch xx

 

[Linbrusco]

@BrianSausage
I truly empathise.
My Mum is the exact same at the moment.
In the past month lucky if shes eaten a whole bowl of porridge and 1 banana. Surviving on sips of lemon barley and maybe a 1/2 bottle of Fortasip a day.
Rapidly losing weight and sleeping majority of the time or awake but eyes shut. Also halucinating reaching out trying to grab/pick up something with eyes shut??
Slight agitation and a bit combative even when Nurses are doing simple things like blood pressure, however I think this is more to do withnot getting all her regular medication even crushed into pureed food or into a small peice of soft banana or into drinks.
I just wish she would go in her sleep.
To think she could be like this for weeks on end is heartbreaking.

 

[Baby Bunty]

Thinking off you all above..my mum as been like this for months..deed eol in March/ april..and mums still here..all regular medication stopped and pain and agitated medication given..she got pain patch on now..sleeps for 23 hours..eats tiny mouth fuls off yoghuts or custard. But is still drinking her ensures..cant believe my mum is still here..!!..heartbreaking and soul destroying to see. Cant bear seeing her like this...think off all who are on this long journey off goodbyes. Xxx

 

[Timeout]

Yes, still here with my mum too. Deemed EOL 3 years ago - yes you read that right! She’s survived multiple infections, urine retention, catheterisation, skin breakdown, she sleeps almost all the time but awakens to eat and drink very well.
She can’t speak, can hardly move, is more or less in bed all the time now, grimaces instead of smiles but there doesn’t appear to be any real end in sight. As long as there is some food intake they just keep going.

 

[Baby Bunty]

I know how you feel..soul destroying..and heart breaking!!..my mother..my mum would be mortified!!!..cruel cruel cruel..no other words to say!..my love and thoughts go out to you and all!xxxx

 

[Daughter33]

Well we are well and truly on a rollercoaster ride and I’m not sure how much longer I can cope.
My mum was given a few weeks to live a month ago, and is in a nursing home, but also under the care of our local hospice.

In the last month we have had awful days, really awful days but also good days.
On a good day mum will eat a little sometimes (literally two spoonfuls of something) but on a good good day she has eaten nearly a whole meal. On a bad day she eats nothing.

Her fluid intake is also up and down. Some days she will only take sips of a drink and other days drink more.
She is doubly incontinent, and bed bound. She has vascular dementia and Parkinson’s disease.

On Friday she was awake when I visited and she chattered away about her personal effects. She told me she knew she didn’t have long left and is not frightened of dying, as she knew her mum and dad would look after her.

Today she was distressed and agitated, couldn’t open her eyes and kept crying for her mum. My husband asked her if she could see her mum and she said yes.

The hospice prescribed lorazepam and medazepam to help keep her calm, and the NH are having to give her this more and more regularly.

She has most of the end of life signs, and when she has a bad day I come home thinking that that could be the last time I see her.
And then when I visit the next day she’s sitting up in bed nattering away about nonsense and has eaten all her breakfast and a little lunch!!

I know no one can predict when she is likely to pass, but I feel like I’m in limbo and my emotions are all over the place. I feel like my life is on hold at the moment, and I’m not sure how much more I can take. And then I feel bad because this isn’t about me, it’s all about my poor mum.

Has anyone else experienced end of life like this? I just assumed she’d go downhill and that would be it. I don’t feel like I’ve prepared myself properly for the up’s and downs of this journey.