Can End of Life present as really not End of Life??

[katykatems]

Hiya

I've come over from Middle Stage as things have developed since my original post and I'd like to see if anyone can relate to what we're experiencing.

Recap is that Mum is in hospital following a nasty fall. She's nearly 3 weeks in and recovering from various fractures. She's not eating or drinking much at all, which is no surprise to us because Mum has a history of disordered eating and is very unsettled by different environments.

The doctor shocked us on Thursday by saying Mum is End of Life, pretty much based on her not eating as far as I gather. We expected Mum to have deteriorated when we visited yesterday but in fact she seems loads better than she had been on Sunday. Much more herself, better colour, engaging in conversation, making jokes. She asked for water and a hot drink while we were there, had a few slurps of each, sometimes by herself. The carer said she had managed a banana before we arrived and she let me feed her a few small mouthfuls of cake.

The Dementia Support Nurse popped by and agreed that she usually sees patients much, much more poorly than Mum when deemed to be End of Life. She doesn't think Mum will meet the criteria for the fast tracked discharge the hospital want to action.

Could the doctors be wrong? How ambiguous is End of Life?

 

[Collywobbles]

‘End of Life’ as a concept just means the final phase of life. It can last hours, weeks or months. Approaching the actual end can be very ambiguous indeed, and predicting it is very difficult. It sounds like your doctors are using the first meaning, and the Dementia Support Nurse is using the second. So neither are really wrong, but that doesn’t really help you.

My Granny went into an unrousable sleep and entered the ‘rattly breathing’ phase, so her care home (well experienced in the situation) phoned us to warn that she’d pass during the night. The next morning she woke as normal and ate breakfast. She died in her sleep a few weeks later, with no advance signs.

Thinking of you all at this difficult time.

 

[nitram]

In support of @Collywobbles 's post.

'End of life care is support for people who are in the last months or years of their life.
End of life care should help you to live as well as possible until you die and to die with dignity. The people providing your care should ask you about your wishes and preferences and take these into account as they work with you to plan your care.'
https://www.nhs.uk/conditions/end-of-life-care/what-it-involves-and-when-it-starts/ .

 

[Sarasa]

My mum was in the late stages of dementia but physically still quite fit and able to do a few limited things for herself. She got sepsis at New Year 22/23 and we all thought that was probably the end. She bounced back and returned to her care home. The hospital had done some tests and thought she might have cancer, but we agreed further tests or treatment wouldn't be in her best interests. She remained pretty much as she had been before the sepsis until October 2023 when she suddenly became ill. It was decided not to send her to hospital, and though she looked poorly when I saw her last I thought she'd pull through. Later that week I got a call from the GP to say mum was end of life but she didn't think she was going to die imminently. Twenty minutes later a call from the home to say she'd passed away.
All that is a long way of saying it's difficult to predict. It would be good to get your mum back to a care home if you can and she is well enough to be moved as hospitals are not great places for people with dementia.

 

[Confused Kat]

Also at this confusing stage…
FIL is now having tiny sips of this and that but no subcutaneous IV. Still not great but a tiny bit more awake. They didn’t think he’d make the weekend so had to put something in place. Still with us today. X

 

[Woody54321]

I am confused as well, mum was poorly just after Christmas, bed bound swallow slowing up and lost a lot of weight the doctor said she was end of life and removed medication apart from her pain patch new meds in the form of injections held in the home should they be needed (they have not been needed). Amazingly she started to recover with the withdrawal of her meds, she is gaining weight, much more alert even trying to talk, eating and swallowing well now and looks fresh and happy. The home are now going to assess her as to whether she can get up out of bed into a chair, no idea what to make of it all.

 

[Collywobbles]

I am confused as well, mum was poorly just after Christmas, bed bound swallow slowing up and lost a lot of weight the doctor said she was end of life and removed medication apart from her pain patch new meds in the form of injections held in the home should they be needed (they have not been needed). Amazingly she started to recover with the withdrawal of her meds, she is gaining weight, much more alert even trying to talk, eating and swallowing well now and looks fresh and happy. The home are now going to assess her as to whether she can get up out of bed into a chair, no idea what to make of it all.

Strangely, this sounds familiar for dementia. Sometimes folks who are hovering right on the brink, experience exactly this kind of physical recovery. It’s so unpredictable and family, medical staff and carers are left reacting to what’s happening in the moment. Nobody understands why these temporary recoveries happen and there’s no way of predicting how long they’ll last.

It happened to my Granny, to the point that her care home - experts in the situation - phoned us to say they expected Granny to pass that night. She was eating breakfast as normal the next day, and died without warning a few weeks later.

I know it’s frustrating and worrying, but you could possibly take comfort in knowing that this is almost a ‘standard’ part of the end stage of dementia.

 

[canary]

Im afraid that this final stage is a real emotional roller coaster

My MIL fractured her spine and ended up in hospital where we were told that she was dying and was proclaimed nil by mouth and given pain killers by injection. All the family were called in to say goodbye and she remained like this for 6 days and we all thought she was waiting for her eldest son to come back from holiday. When he got back and visited we thought she would then pass away, but instead, she rallied and started eating and drinking again. She was moved to a nursing home on EOL care and passed away 3 months later.

In mums final year I was told 3 times that she was dying and would not survive, but each time she bounced back. Finally, of course, she did not, but almost up to the end I was expecting her to do so again.

When OH got sepsis I was told that he was at end of life, so I called his brother and we went in only to find him sat up in bed reading, having just had breakfast. He is still here 4 years later.

There is just no knowing

 

[maggie6445]

Im afraid that this final stage is a real emotional roller coaster

My MIL fractured her spine and ended up in hospital where we were told that she was dying and was proclaimed nil by mouth and given pain killers by injection. All the family were called in to say goodbye and she remained like this for 6 days and we all thought she was waiting for her eldest son to come back from holiday. When he got back and visited we thought she would then pass away, but instead, she rallied and started eating and drinking again. She was moved to a nursing home on EOL care and passed away 3 months later.

In mums final year I was told 3 times that she was dying and would not survive, but each time she bounced back. Finally, of course, she did not, but almost up to the end I was expecting her to do so again.

When OH got sepsis I was told that he was at end of life, so I called his brother and we went in only to find him sat up in bed reading, having just had breakfast. He is still here 4 years later.

There is just no knowing

Good morning @canary, hope you have a better day today. X

 

[canary]

Good morning @canary, hope you have a better day today. X

💖

 

[Woody54321]

Strangely, this sounds familiar for dementia. Sometimes folks who are hovering right on the brink, experience exactly this kind of physical recovery. It’s so unpredictable and family, medical staff and carers are left reacting to what’s happening in the moment. Nobody understands why these temporary recoveries happen and there’s no way of predicting how long they’ll last.

It happened to my Granny, to the point that her care home - experts in the situation - phoned us to say they expected Granny to pass that night. She was eating breakfast as normal the next day, and died without warning a few weeks later.

I know it’s frustrating and worrying, but you could possibly take comfort in knowing that this is almost a ‘standard’ part of the end stage of dementia.

thank you for your reply, its all so strange if she keeps this recovery up I nearly feel she could come home, I am struggling to maintain the house and garden and was waiting for controllership to sell the property now I am unsure although part of me feels she is better off in the home I am worried she might want home and it would be awful if the property and her possession have been sold.

 

[katykatems]

Sympathies and strength to those of you who are also experiencing this awful uncertainty.

Our story continues to get more confusing. Mum passed the fast tracked discharge assessment she had on Saturday. The nurse who did it called me to explain why and also explained that fast track wasn't about getting Mum moved any faster, rather its about accessing the funding quickly, essentially "time is of the essence." She advised a Nursing home rather than a return to the care home as Mums expected decline would require this and it would save a move.

I sourced a nursing home - the only option in the area we would like Mum to be. They aren't dementia licensed but the manager said they do often take fast track end of life advanced dementia so she held the last room they had and agreed to do an assessment at the hospital.

Meanwhile, the current care home manager visited Mum on Tuesday whilst I was there and said yes she believed the nursing home was a better option than returning to them as Mum does need extra support (She told me today that she's let Mums room to someone else already)

The Nursing home manager called me this morning after completing her assessment and said she can't take Mum - she's too 'well'. She said Mum is moving about the bed, trying to get up and able to have lucid conversation - not what she had expected. She said Mum is going to be high risk wherever she goes if she doesn't have one to one care, because she's going to try to get out of bed and no home will be able to give her care 24/7. Basically as soon as she leaves the hospital she will have another accident. She said I can battle to get CHC funding for one to one care. She said all homes will be reluctant to take Mum as her injuries were so bad from the fall she's just had. I am waiting for a call back from the discharge team tomorrow because this all sounds crazy to me.

Alongside all this, Mum is getting better (on the face of things) every day, asking to get out of bed now, if she can have a shower, and sit on the toilet rather than just 'go' in bed with pads which naturally she's very uncomfortable about and is no doubt contributing to her constipation. We're being told she can't do any of those things because Physio has now been withdrawn.

It's all madness to me.

 

[sdmhred]

Madness indeed @katykatems

I have no wise words, other than that we are here and reading of you and your mum’s suffering.

🙏🙏🙏

 

[Chizz]

Best wishes and hugs to you @katykatems for the ups and downs of your emotions, let alone your mum being too well for the care home!!

 

[Tezza123]

Sympathies and strength to those of you who are also experiencing this awful uncertainty.

Our story continues to get more confusing. Mum passed the fast tracked discharge assessment she had on Saturday. The nurse who did it called me to explain why and also explained that fast track wasn't about getting Mum moved any faster, rather its about accessing the funding quickly, essentially "time is of the essence." She advised a Nursing home rather than a return to the care home as Mums expected decline would require this and it would save a move.

I sourced a nursing home - the only option in the area we would like Mum to be. They aren't dementia licensed but the manager said they do often take fast track end of life advanced dementia so she held the last room they had and agreed to do an assessment at the hospital.

Meanwhile, the current care home manager visited Mum on Tuesday whilst I was there and said yes she believed the nursing home was a better option than returning to them as Mum does need extra support (She told me today that she's let Mums room to someone else already)

The Nursing home manager called me this morning after completing her assessment and said she can't take Mum - she's too 'well'. She said Mum is moving about the bed, trying to get up and able to have lucid conversation - not what she had expected. She said Mum is going to be high risk wherever she goes if she doesn't have one to one care, because she's going to try to get out of bed and no home will be able to give her care 24/7. Basically as soon as she leaves the hospital she will have another accident. She said I can battle to get CHC funding for one to one care. She said all homes will be reluctant to take Mum as her injuries were so bad from the fall she's just had. I am waiting for a call back from the discharge team tomorrow because this all sounds crazy to me.

Alongside all this, Mum is getting better (on the face of things) every day, asking to get out of bed now, if she can have a shower, and sit on the toilet rather than just 'go' in bed with pads which naturally she's very uncomfortable about and is no doubt contributing to her constipation. We're being told she can't do any of those things because Physio has now been withdrawn.

It's all madness to me.

Katykatems I am sorry to hear you are also going through this roller coaster nightmare with your mum. My own is now bed bound, aged 97, eating teaspoons full of food, less than a baby, and drinking so little. I can’t understand how she can live with so little nutrition - but this is the 6-8th week !

Anyway before this latest decline , and following a fall injuring but not breaking her hip, they said she’d have some physio- but 10 week waiting list! We have a lovely physiotherapist local to us ( North East UK), so I called her and she visited 3-5 times a week. Not cheap ( about £55 per 45-60 min visit), but worth it to see if intense physio helped. If your mum has the funds you could try the same ? In the end mums decline was rapid and she had bed sores - so that is how she is now cared for in bed. She unable to even move her own body and has to be ‘turned’.

Good luck with your mum

 

[None the Wiser]

@katykatems - The care system is a minefield. Social services will have access to a list of care/nursing homes that should be able to provide appropriate care for your mother. If she needs one to one she may well qualify for CHC funding but that is also a lottery. You need someone who really knows what they’re doing to help you complete the lengthy form. My husband ended up in a home that is a 50min drive away from where we live. It‘s not one I would have necessarily chosen by simply looking around ( it’s not particularly attractive or cosy, and the resident‘s behaviour can be very challenging from time to time) but the care he is getting is good and I feel he is safe. His care is very specific to his needs. His sister is in a home that is a mile away from our house. It’s a very attractive home and she is very happy there. She too has dementia but her needs are very different to my husband’s.
It would be preferable for your mum to be nursed in a home that is used to nursing and caring for dementia patients as their needs and journey can be very erratic and different to other’s on end of life care.
Finding the right place for your mother will be important both for her and for you. I wish you well with your search.

 

[Sterlingtimes]

Katykatems I am sorry to hear you are also going through this roller coaster nightmare with your mum. My own is now bed bound, aged 97, eating teaspoons full of food, less than a baby, and drinking so little. I can’t understand how she can live with so little nutrition - but this is the 6-8th week !

Anyway before this latest decline , and following a fall injuring but not breaking her hip, they said she’d have some physio- but 10 week waiting list! We have a lovely physiotherapist local to us ( North East UK), so I called her and she visited 3-5 times a week. Not cheap ( about £55 per 45-60 min visit), but worth it to see if intense physio helped. If your mum has the funds you could try the same ? In the end mums decline was rapid and she had bed sores - so that is how she is now cared for in bed. She unable to even move her own body and has to be ‘turned’.

Good luck with your mum

Hello Tezza. My mother is in an almost similar situation. She will be 96 in three weeks' time. She made her final few steps on 2nd April and has been bedbound ever since. She is in pain. She is unable to move except for slight inflexions in one leg that cause her bed sores. She has to be turned. She has to be fed and eats very little save for some viscous liquids. She, a tall lady, hit a minimum weight of 37 kg but has surprisingly added 3 kg. This means 24 hour care now in a nursing home. I don't know how she goes on.