Is this the EOL??

[katie1985]

Hi.

My nana contracted pneumonia 12 months ago and was in hospital for 3 weeks with severe delerium.
She was discharged and as a family we have helped cate for her for the last year as the delerium never went away. Some days were good, others were horrendous. Everytime she had an infection it would spike and she would literally have us up for days.

Social services got involved and she was prescribed medications, yet nothing would make her better. They then suggested that it could be Lewy Body Dementia and that she was to go for a DAT scan, however around 10 weeks ago she was poorly that day and we could not take her.

6 weeks ago Nana really deteriorated and ended up back in hospital with another bout of pneumonia. She lost the ability to talk, swallow and urinate. They have had to catheterise her as they said she would not be able to pass urine on her own no more. SALT team were involved and she was put on level 2 puree food. Her mobility has also completely gone. The hospital over ruled the family and suggested that she was to be put in a nursing home for an assessment instead of us being able to bring her home.

She was in the care home for 2 days and the 2 days that she was there they had to ring the paramedics out for her as her sats were really low. This ended up in nana being transferred back in to hospital and they put her on drips etc as her swallowing still hadn't returned.

Nana got discharged again last Wednesday, however by day 2 back in the care home, again they had to ring paramedics as her sats were low again. She is now still in hospital, and after a chest x Ray she has been diagnosed with double pneumonia. They think this is because she is aspirating. She had pockets of fluid in both lungs. After a meeting with a consultant this morning they have stated that she will not be having any more iv fluids or antibiotics and is going to be discharged back to the care home with oral antibiotics??

The deterioration in her is worse daily and she spends most of her days sleeping. When she is awake and trying to talk nothing makes sense in what she is saying. She has literally had little puree food in 6 weeks and will now be offered no more fluids.

I was just wondering how long can this stage go on for especially with no food or fluids and with the infection being high and only being treated with oral antibiotics is also worrying??

She is just suffering now. Any advice would be so helpful.

Thank you

 

[Palerider]

Hi.

My nana contracted pneumonia 12 months ago and was in hospital for 3 weeks with severe delerium.
She was discharged and as a family we have helped cate for her for the last year as the delerium never went away. Some days were good, others were horrendous. Everytime she had an infection it would spike and she would literally have us up for days.

Social services got involved and she was prescribed medications, yet nothing would make her better. They then suggested that it could be Lewy Body Dementia and that she was to go for a DAT scan, however around 10 weeks ago she was poorly that day and we could not take her.

6 weeks ago Nana really deteriorated and ended up back in hospital with another bout of pneumonia. She lost the ability to talk, swallow and urinate. They have had to catheterise her as they said she would not be able to pass urine on her own no more. SALT team were involved and she was put on level 2 puree food. Her mobility has also completely gone. The hospital over ruled the family and suggested that she was to be put in a nursing home for an assessment instead of us being able to bring her home.

She was in the care home for 2 days and the 2 days that she was there they had to ring the paramedics out for her as her sats were really low. This ended up in nana being transferred back in to hospital and they put her on drips etc as her swallowing still hadn't returned.

Nana got discharged again last Wednesday, however by day 2 back in the care home, again they had to ring paramedics as her sats were low again. She is now still in hospital, and after a chest x Ray she has been diagnosed with double pneumonia. They think this is because she is aspirating. She had pockets of fluid in both lungs. After a meeting with a consultant this morning they have stated that she will not be having any more iv fluids or antibiotics and is going to be discharged back to the care home with oral antibiotics??

The deterioration in her is worse daily and she spends most of her days sleeping. When she is awake and trying to talk nothing makes sense in what she is saying. She has literally had little puree food in 6 weeks and will now be offered no more fluids.

I was just wondering how long can this stage go on for especially with no food or fluids and with the infection being high and only being treated with oral antibiotics is also worrying??

She is just suffering now. Any advice would be so helpful.

Thank you

I'm so sorry to hear about your grandma

It is hard to say how long this can last as other TP members will tell you, it sounds like end of life and probably from you have said it is the right decision, but that does not mean she should be left without being made comfortable. The main thing is that she is pain free and distress free or as much as possible. Did the hospital discuss with you end of life medications should she need them? They are not always necessary and are not always just about pain relief, a sedative can also be given for distress if that is all that is needed. If you have any concerns you can get hold of her GP to discuss management if none of this is already in place.

 

[katie1985]

No nothing has been discussed in regards to any other medication apart from the oral antibiotics that she will be discharged with for the pneumonia. I'm hoping we get more answers when she is back in nursing home as they were a lot more informative than the hospital Dr's and nurses who we have spoken with.

 

[Gosling]

Hi.

My nana contracted pneumonia 12 months ago and was in hospital for 3 weeks with severe delerium.
She was discharged and as a family we have helped cate for her for the last year as the delerium never went away. Some days were good, others were horrendous. Everytime she had an infection it would spike and she would literally have us up for days.

Social services got involved and she was prescribed medications, yet nothing would make her better. They then suggested that it could be Lewy Body Dementia and that she was to go for a DAT scan, however around 10 weeks ago she was poorly that day and we could not take her.

6 weeks ago Nana really deteriorated and ended up back in hospital with another bout of pneumonia. She lost the ability to talk, swallow and urinate. They have had to catheterise her as they said she would not be able to pass urine on her own no more. SALT team were involved and she was put on level 2 puree food. Her mobility has also completely gone. The hospital over ruled the family and suggested that she was to be put in a nursing home for an assessment instead of us being able to bring her home.

She was in the care home for 2 days and the 2 days that she was there they had to ring the paramedics out for her as her sats were really low. This ended up in nana being transferred back in to hospital and they put her on drips etc as her swallowing still hadn't returned.

Nana got discharged again last Wednesday, however by day 2 back in the care home, again they had to ring paramedics as her sats were low again. She is now still in hospital, and after a chest x Ray she has been diagnosed with double pneumonia. They think this is because she is aspirating. She had pockets of fluid in both lungs. After a meeting with a consultant this morning they have stated that she will not be having any more iv fluids or antibiotics and is going to be discharged back to the care home with oral antibiotics??

The deterioration in her is worse daily and she spends most of her days sleeping. When she is awake and trying to talk nothing makes sense in what she is saying. She has literally had little puree food in 6 weeks and will now be offered no more fluids.

I was just wondering how long can this stage go on for especially with no food or fluids and with the infection being high and only being treated with oral antibiotics is also worrying??

She is just suffering now. Any advice would be so helpful.

Thank you

This is so sad and I do feel for you. As @Palerider has said, each persons journey towards end of life with this awful disease is different, and particularly in time. It is amazing how long the body can continue without nourishment and little or no fluid..
The important thing is making your Nana comfortable and pain free . I am sure the nursing home will discuss this with you on her return there, and also any end of life meds, should they be needed (they're not always).
I wish you strength to get through the coming days, and I very much hope that your Nana settles and is comfortable once back at the nursing home. Take care.

 

[Raglan]

Hi Katie1895,

Going through something similar to your case with my Mum who had pneumonia recently and now has little or no swallow and we were told she is on level 2 food too. She is still in hospital as we were told yesterday they are going to do an MRI to see if a stroke caused the sudden loss of swallow. I don't really know what can be done if results show that she had a stroke due to her frailness and her mind. She had bouts of delirium last year and at Christmas we were told she has "undiagnosed dementia" and needed longterm care. Last week the doctor told us more or less the same story as your consultant about going back to nursing home and to be treated there for future infections. Big hugs to you.....this group is so helpful as lots of people have experienced the same issues we are coming across and offer their help and experience.

 

[katie1985]

Thanks everyone for your advice. It's so sad that other people are also suffering due to this cruel disease. We have all been called to nursing home this morning as they have ordered EOL drugs just incase they need to be administered over the weekend as she is not too good today and her sats were 82 this morning.

 

[sea shanty]

reading this because I searched for issues with food, relative in kind nursing home with good experienced staff, was admitted to hospital a couple of weeks ago with cough that was shifting and relative refusing meds and food. Hospital initially very concerned, but got IV fluids and antibiotics sorted. Relative back in nursing home and with slight cough still according to chief nurse, also no longer able to eat solid food. Relatives son is main contact and visits regularly, but says relative is in effect much better and could live for a long time yet. I find it so odd that one day a dr at hospital says relative may not survive much longer, then oh looking better then send her back with cough. Nursing home say relative needs permanent help to eat puree food. Not even thinking about CHC for now as that is just another hurdle. When does anyone talk about how long this will go on for? Family and GP have agreed no unnecessary intervention or more A&E visits, keep relative comfortable. Son thinks because relative is sitting up (with huge help as is not mobile) that relative is far from being seriously ill.... I feel the GP and staff are avoiding being honest for fear of causing upset or getting it wrong.

 

[canary]

Hello @sea shanty

Im afraid that people with dementia quite often do appear to be at deaths door, only to perk up and rally. I was told three times by various doctors over the course of a year, that my mum was at end of life, only for her to rally each time. Of course, eventually she didnt...

The truth is that nobody knows when the end will come. Your relative is obviously in advanced dementia stages now, with the loss of mobility and swallowing issues (hence the cough and having to eat pureed food), but I have known people with dementia live for a couple of years or more like this. On the other hand, she may suddenly decline and pass away in a couple of weeks. As I said - there is just no knowing, so I doubt that the doctor and staff are not being honest. With dementia it can be a real emotional roller coaster and you often have to just take each day as it comes.

 

[Sigricb]

Hi.

My nana contracted pneumonia 12 months ago and was in hospital for 3 weeks with severe delerium.
She was discharged and as a family we have helped cate for her for the last year as the delerium never went away. Some days were good, others were horrendous. Everytime she had an infection it would spike and she would literally have us up for days.

Social services got involved and she was prescribed medications, yet nothing would make her better. They then suggested that it could be Lewy Body Dementia and that she was to go for a DAT scan, however around 10 weeks ago she was poorly that day and we could not take her.

6 weeks ago Nana really deteriorated and ended up back in hospital with another bout of pneumonia. She lost the ability to talk, swallow and urinate. They have had to catheterise her as they said she would not be able to pass urine on her own no more. SALT team were involved and she was put on level 2 puree food. Her mobility has also completely gone. The hospital over ruled the family and suggested that she was to be put in a nursing home for an assessment instead of us being able to bring her home.

She was in the care home for 2 days and the 2 days that she was there they had to ring the paramedics out for her as her sats were really low. This ended up in nana being transferred back in to hospital and they put her on drips etc as her swallowing still hadn't returned.

Nana got discharged again last Wednesday, however by day 2 back in the care home, again they had to ring paramedics as her sats were low again. She is now still in hospital, and after a chest x Ray she has been diagnosed with double pneumonia. They think this is because she is aspirating. She had pockets of fluid in both lungs. After a meeting with a consultant this morning they have stated that she will not be having any more iv fluids or antibiotics and is going to be discharged back to the care home with oral antibiotics??

The deterioration in her is worse daily and she spends most of her days sleeping. When she is awake and trying to talk nothing makes sense in what she is saying. She has literally had little puree food in 6 weeks and will now be offered no more fluids.

I was just wondering how long can this stage go on for especially with no food or fluids and with the infection being high and only being treated with oral antibiotics is also worrying??

She is just suffering now. Any advice would be so helpful.

Thank you

Hi
Firstly my thoughts are with you and I can sympathise its such a roller coaster with no control over when or how long. Mum has Alzheimer's and probably Parkinsons she's just turned 91. Mum was in residential care after a serious TIA and then subsequent falls and a massive drop in her mobility. Her short term memory issues meant she couldn't remember that she needed assistance now at night to get to the toilet several falls later and a head injury which resulted in admission to hospital the care home said they were unable to take her back! Eventually we found a nursing home but after a week cot sides weren't put up at night and she fell fracturing her hip. Since then she has continued to decline and is now bed bound, doubly incontinent and is now on pureed food and thickener in drinks. So far she's had Covid, urine infections, cellulitis she mainly sleeps and on many occasions we have felt we might be nearing the end but each time she rallies and perks up slightly its impossible to know when the end will come but sadly it feels like a cruel end to a good life both for her and for us. I sometimes wonder why and who truly benefits!!

 

[millalm]

@Sigricb no one benefits, except maybe the company that profits from the care home fees. I live in Canada where we have Medically Assisted Dying, but unfortunately the current legislation requires the person to be fully cogniizant on the day so that they can confirm that this is their choice, which I think is more about the legal protection for the medical personnel involved than for the benefit of the patient. There seems to be a huge void both in the medical community, the government and the public when it comes to dementia. Unless you are directly involved with a person with dementia you have no idea of the suffering that happens to both the patient and the caregivers.

I have been on this journey with my Mum for 12 years and so many times I thought I was saying goodbye for the last time only to see her rally the next day. I know for sure that my Mum is not going to recover from this cruel disease and I can't help but wonder Am I ever going to recover? My Mum would be so angry if she knew what a cruel twist this disease has brought to the end of our lovely family life too.

It is my hope that if I should develop dementia that there will be new laws that will spare my family from this journey.

I'm so sorry you are on this same rollercoaster, your words touched me today, I know exactly how you feel.

wishing you strength

Lynne

 

[Sigricb]

@Sigricb no one benefits, except maybe the company that profits from the care home fees. I live in Canada where we have Medically Assisted Dying, but unfortunately the current legislation requires the person to be fully cogniizant on the day so that they can confirm that this is their choice, which I think is more about the legal protection for the medical personnel involved than for the benefit of the patient. There seems to be a huge void both in the medical community, the government and the public when it comes to dementia. Unless you are directly involved with a person with dementia you have no idea of the suffering that happens to both the patient and the caregivers.

I have been on this journey with my Mum for 12 years and so many times I thought I was saying goodbye for the last time only to see her rally the next day. I know for sure that my Mum is not going to recover from this cruel disease and I can't help but wonder Am I ever going to recover? My Mum would be so angry if she knew what a cruel twist this disease has brought to the end of our lovely family life too.

It is my hope that if I should develop dementia that there will be new laws that will spare my family from this journey.

I'm so sorry you are on this same rollercoaster, your words touched me today, I know exactly how you feel.

wishing you strength

Lynne

 

[Sigricb]

Thank you for the reply I can totally empathise its been 9 years for us and 5 before that supporting mum whilst my dad had cancer. He died 9 years ago at home with his family and all the medical and nursing support he required no questions asked no fees paid. Like you I hope we have something better in place in the future as we are now on the third generation of females on my mums side to have dementia!! You are spot on about who benefits its the private owners and their investors. Mums home is one of a big chain 215 homes in the UK and the owners, in this case 3 Irish Billionaires!! Race Horses and Football Clubs are among their other ventures.
According to a report and accounts published by the UK nursing home group show that profits rose to over £31.84m (€36.67m), with revenues increasing almost 13.5% from £675.9m to £766.76m.
Makes me so angry that vulnerable people and their families are being used to make others very very comfortable!!
Sending my thoughts and a hug its a cruel disease that slowly destroys the person and tortures those who have to watch it.
Xxx