A little confirmation

[Caringforkath]

Hi.

I have been a daily lurker.
So my LO was placed into care with late stage AD 2 years ago.
Always been mobile and fit as a flea dementia aside.
Anyway Oct 23 after a hospital stint due to abdo pain and blood transfusion and iron transfusion due to very low HB she was found by ultra sound to have a "mass" in her uterine lining. It was decided due to how bad her dementia was investigations and treatment wouldn't take place - The diagnosis without any further exploration was cancer - stage unknown.
Fast forward to Feb 24 she has slept a lot more, some days only waking for 3 hours or so in stints, become more withdrawn, always in her room asleep very rarley in the lounge/dining room now.
The doctor was called out yesterday due to a 4 day period of almost constant sleeping, weight loss, and very little food. Pre empt EOL drugs were issued, and the care home manager is this morning making a fast track for CHC from residential to nursing (within the home she is in) .... it just all seems so sudden, so not right, she dosnt look like the stereotypical dying person if that makes sense. She can still with assistance get into her easy chair. She is only 72! I suppose what I'm trying to ask and I know that EOL care can last months and the pre empt drugs are not in use as yet but .... is she really in the transition of entering her terminal phase? The care assistant in me knows yes... the Beloved Daughter in Law in me says "Noooo nah not K .... that's impossible" ..... What are other peoples experience of pre empt EOL drugs and fast track nursing requests? Xxxx

 

[canary]

Hello @Caringforkath

Im afraid I dont know anything about CHC, but I do know about that feeling of Nooooo, not them ....... there must be some mistake.......

When my mum was dying she too did not look like the stereotypical "dying person" - at least, not to start with.
When someone dies from dementia it is a long, slow process as the body closes down gradually over days and weeks. My mum went17 days with no food or fluid whatsoever and for the first 10 days, you would have had no idea that she was dying. She slept a lot more, but she too could get into a chair with help and used to still go into the lounge. I have a photo of her with her great grandson who was about 9 months old. They are both sat at a table, both banging teaspoons on the table and both laughing their heads off. Looking at this photo you would not believe that in just over a weeks time she would be dead, but she was.

A couple of days after this photo, though, she became bed bound and there was no doubt. She needed the end of life meds and started displaying all the signs of someone who was dying. It still took many days before she did pass away, though.

I think you can only take each day as it comes. As she is still eating and drinking, even if only a little, there is probably a way to go just yet and, also, many people with dementia get to what is apparently deaths door, only to rally and go on for a few more months. On the other hand, they can look like they are here forever, only to suddenly go downhill and pass away within a short time. Im afraid it is a horrible emotional rollercoaster
xxx

 

[jugglingmum]

Whilst there are many signs someone is dying, they don't all appear in every individual.

In Feb my mum had covid, was very poorly and prescribed end of life meds, which meant they were in place if needed. She rallied and was no longer end of life, and was back to her base line for Mother's day in March, enjoying the spread the care home laid on, and very happy in birthday photos in April, better than she'd been in November.

In mid May on a visit I was called in and told they considered her end of life as she was loosing weight, and barely eating. She had continually lost weight in the 14 months she had been in the care home, they ensured she had continual snacks of cake, esure drinks etc (she loved her mid morning coffee - really esure). She had suddenly stopped drinking much tea, and she'd always drunk lots of tea they said. They said it might be very sudden, likely to be 2 to 4 weeks and could be months. She was still walking with a frame and eating and drinking small amounts. If I hadn't been on this forum for years I would have been shocked and disbelieving.

A week later she had caught a virus and was very poorly, called all family to visit (2 members were hours away in different directions) and she rallied within 48 hours. 2 weeks after that I got a call to say unresponsive, district nurses had been called for end of life meds to be administered, and she passed away within hours, brother didn't make it in time, and my daughter didn't try having felt she'd said her good byes - but wouldn't have made it anyway.

Mum hadn't been responsive since initially found like that in early evening on regular check, and was deaf, so communication was via a white board, so we don't think she would have been aware if we'd been there anyway.

The morning of the day she passed she was still eating and drinking small amounts, mobile to some extent, and had sat in her chair and joked with the GP on her weekly visit.

The GP thought it was probably pneumonia, but hadn't heard anything on her lungs that morning, although there had been 'crackles' a week before. I had the option to have pneumonia on the death cert but chose to leave it off, with old age and dementia as cause of death.

As mum wasn't in a nursing home CHC wasn't considered.

 

[Sarasa]

My mother ended up in hospital with urosepsis at New Year 2022/23. While there they did a scan and also spotted something that could be cancer. However like your wife it was decided that further exploration wasn't in her best interests and after the infection cleared up she returned to her care home.
Mum was already at a pretty advanced stage, she didn't make a lot of sense though she still chatted, she didn't eat or drink much, though she still drunk cups of tea and she could no longer walk, though she could stand to be transferred to a wheel chair. For most of last year mum didn't really decline much, then suddenly in October she went down-hill rapidly and died five days later. Twenty minutes before she died I'd been speaking to her GP who said mum was end of life, and was prescribing the 'just in case' drugs. To get another call a few minutes later was a bit of a shock as I thought mum would carry on for weeks, and maybe even rally as she was such a strong woman.
I'm sorry that you are at this stage @Caringforkath , and at such a relatively young age too.

 

[SkyeD]

My mum went downhill very steeply and visibly noticeable, for the last 3 months of her life. She sadly died from a massive brain bleed. She never regained consciousness and spent her last 4 days comfortable and pain free in hospital. According to the NHS staff, she wouldn't have known anything about it, and that in itself was a blessing.
Take care of yourself @Caringforkath - my thoughts are with you.
S x