So many people will have experienced this I know 😞. TRIGGER WARNING - distressing

[Oxfordshire]

I visited last weekend, my sister visited this weekend - and the care home have phoned to confirm what we really already knew.

Mum has “forgotten” how to walk and eat. They are finding a wheelchair for her and will assist her to eat, but it appears we really are on to final stage now. We knew it was coming, but it has hit me suddenly - she is going to die, and it maybe won’t be too long now.

I just don’t know what to do - if we visit Mum there is absolutely nothing of her left due to the Rispiradone she is on. She cannot have any conversation, watch TV, anything.

The care home have advised she may lose weight as her body “forgets” how to digest food. From online searches it seems she may eventually get a respiratory infection or similar which will signal the end.

It sounds horrible but for Mum’s sake we would rather than was sooner rather than later, she has absolutely no life any more. She is flat and disengaged this week because she cannot even make a decision whether she would like to visit the garden centre or not….

 

[cymbid]

i can only send you a hug. When there is no quality of life left , it is time to go. x

 

[Collywobbles]

At this final stage, many folks have written on here that they wished it would all be over sooner. You’re certainly not alone in that feeling. It’s natural that we don’t want our loved ones to suffer in the way that dementia forces on them.

 

[mhw]

My mum has been basically totally immobile, double incontinent, non verbal and cognitive function, had god knows how many SALT assessments, can't eat or drink without help and encouragement, bi lateral pneumonia, uti's, ripped out 2 fully inflated foley catheters over lived her 8 yrs max life expectancy by another 4 yrs, and I still had to fight for them to agree she is actually in the end stage of dementia and register her for palliative care( under 12 months to live). From what you have described I think you have quite some time to go. They tend to force nutrition in the way of fortisip type drinks, to keep them going. Why, I do not know as its just putting off the inevitable and probably increasing their suffering ( definitely the people watching)
Good luck, this part is horrible, wanting someone to die and feeling guilty. 😢

 

[luggy]

My sympathies are with everyone going through this end stage of dementia. Please do not feel guilty about wishing for it to end. During the course of the last 3 years I've been told on 3 occasions that my mum was in the final stages, and each time I've thought 'thank goodness'. For all of this time, mum has been totally bedridden with severely contracted legs, doubly incontinent and has a severe deficit in her cognition. Poor mum has just laid in her bed for 3 years, unable to participate in any kind of enrichment activity. She barely eats and is also being kept alive with nutritional supplements - I've asked for these to be stopped but the care home and GP ignore my requests. The cynic in me can't help but think that this protocol is adopted so that the care home don't have to spend long periods of time trying to get mum to eat, and so that the GP is protected from litagation. I can't see how it can be of any benefit to my mum.

 

[Sterlingtimes]

Oh dear, this mirrors my mother's condition: spinal degeneration, non-united hip fracture, pain and bedsores, completely bed-bound, skeleton appearance, and declining cognition. I used to expect morning telephone calls from the hospital or nursing home that my mother had died, but I have moved beyond this expectation. We are now in what appears to be an eternal plateau state.

The NHS cooperated in ceasing about ten medications, including those for heart rhythm and blood clots. Now it is all about liquid morphine and liquid paracetamol. Fortisip remains prescribed. Oddly, my mother's food intake has increased slightly. A daily food log includes ice cream, yoghurt, up to four spoonfuls of soup, and strangely and inconsistently crustless toast and marmalade.

I have no idea how long this dreadful situation can continue.

 

[Aqua Marina]

Final stage? My Dad was diagnosed Alz/Vascular dementia March 2023.
He went into hospital after a fall in December & he hasnt walked since February in hospital coz they moved him and physio was not as robust.
He says he's been out today when he hasnt. He's about to become permanent in a NH, keeps losing weight, 6ft and now 64kgs or less. How do we know it's final stage stage please? He still knows us all and is eating normal food.
I'm sorry for you all watching your family members like this, it is no life for anyone.

 

[Woody54321]

So familiar, mum was very unwell after Christmas, then was described as end of life all meds stopped except pain relief, has been put onto enriched drinks and loves them. She seems to be more relaxed now and gaining weight strangely making me wonder why she was on all the medication in the first place as she is healthier off it. Having said that she is bedridden, no verbal or very few words and has to be reminded to swallow no life really. So I think you may find this stage longer than you think, some people say years which is horrible. The main thing now is look after yourself as your mum is being cared for and this is a long road xx

 

[Becs73]

My dad has been ill for so many years with FTD, he is totally bed bound , double incontinent, can't speak and now had yet another chest infection, and is on abx, but this time he has secretions and can't clear his throat and we think he has aspirated and it's in his lungs. He is really suffering now and I just want him to close his eyes. The salt team and frailty team have been into his care home today and have agreed to issue just in case meds. I want him to be comfortable, but this now feels like it could be very real.I miss my dad so much, he would totally hate this. Love to everyone going through this, it's just unbearable

 

[Tilly13]

Also at this stage with my beloved Dad.
Three weeks ago suddenly not able to speak coherently, unable to weight bear, unable to drink or eat independently, so a wheelchair and hospital bed - leading to more upset and aggression during personal care.
Has been doubly incontinent , continually fidgeting/rubbing his hands on his legs and eyes closed most of the time for past 18 months.
Nurse says Palliative now with his Alzheimers
Last week suddenly drinking independently and more mobile, much more alert!!!!

It is such an emotional rollercoaster...

 

[Sirena]

My mother has been immobile, doubly incontinent, and only intermittently responsive for well over a year. The care home staff give her drinks and puree'd food. She is being kept alive, but she isn't living. I visit her every few weeks and occasionally I get a smile, but mostly she is just asleep. When I visit I mainly chat to the staff, there is no chance of interaction from her any more. I find it so sad she is being kept alive, but I know the care home have to do all they can.