Rapid decline in mum with dementia after fall, are we near the end?

[Impatient1987]

My lovely mum has dementia, and been on a steady decline for the past 6 years, she became doubly incontinent around 4 months ago.

Up until 5 weeks ago, she was a wanderer and couldn't sit still for more than 15minutes, she consistently whispered to herself or hummed a tune.

5 weeks ago she had a fall/fainted (were not sure which). Checked over by the hospital (CT, ECG and bloods). All looked fine. Since that happened, shes lost all confidence in walking, is disinterested in eating/drinking and sleeps around 22 hours of the day. Before the fall I was trying to convince my Dad we needed carers (he's been her sole carer). Since the fall, and with the sharp decline her needs became so intense, she clearly needed to be in a home. Dad resisted for a couple of weeks but eventually admitted to himself she should be in a home.

Shes been there since last weekend and has slept almost the entire time. I dont know what to think, are we close to the end? Its unbearable for all of us to see her in this condition.

Sorry to hear this. Falls are usually the start of the process.

It could be a while yet though. Impossible to say I'm afraid. My DM went into a home immobile and doubly incontinent but compos mentis. She mentally declined quite quickly but was with us for another 10 months despite receiving NHS funding for the home as her prognosis was only 3 months.

It’s virtually impossible to answer your question my sweet.

I’ve had dementia residents still mobile and eating suddenly pass in a couple of days, yet one lady who was bedbound, doubly incontinent and unable to feed herself go on for years, despite being listed for ‘end of life care’ several times over.

There isn’t a definitive answer to your question :(

It's impossible to answer. Purely from a personal perspective, my dad had a fall in April last year, developed post operative delirium and died in September.

Thank you all, I think the not knowing is one of the hardest things to deal with throughout this wretched illness 😢

From my experience if the nursing home is waking her up to eat and almost forcing food and water down her she can go like this for years 😩 I personally think it’s kinder to bring elderly home, let them sleep and pass away gently.

I’m so sorry. We’ve just been through this as a family. As others have said, it’s very hard to know but the constant sleeping was the beginning of the end for us - a process which took around 6 weeks. However we were dealing with chronic heart failure as well as dementia which must have played a role.

I’m so sorry @Impatient1987 . It’s fucking awful. As other posters has said it’s impossible to say with any certainty, but the losing interest in eating and drinking can be a sign that the body is winding down.

I hope her end is peaceful and not too prolonged. Sending you strength at this difficult time

I'm so sorry, I can understand that the uncertainty is hard to deal with 😔 a fall can often be the catalyst for more sustained decline but no-one can really tell you how much longer your mum could go on for. I would just try and take each day at a time and push away worries and thoughts about the future as there are no definitive answers.

Even if your mum is sleeping, I would sit by her, hold her hand and chat to her, or read to her. Who knows what we are able to take in and I'm sure your presence will induce a feeling of calm and reassurance. Sending love to your whole family 💐

Impossible to say. We have a family member who has been bedridden at home with carer visits for eighteen months and sleeps much of the time.

I know you don't probably mean it like this? But the carers in the care home only do what they are told, by the actual people running the care home, who unless a Dr tells them differently have to hydrate people. For every relative who wants to withhold fluid and water to their loved one there's others who will go to the national news/social media. They demand everything is done to keep people alive.. it's a fine balancing act.. but ultimately unless told (meetings with relatives/documented in care plans) otherwise the staff have to at least try..
Said gently as someone who had to agree to stop all attempts but agreed to use sponges with water in my DM mouth

A fall is often what is known as a terminal event - but the length of time that a person hangs on afterwards is impossible to predict.
When my late OH (a retired GP with Parkinsons) fell and fractured his femur he sat on the floor and said "This is the beginning of the end." He had seen it so many times before.
The fact that she is sleeping mostly is a cause for comfort - while she is sleeping she is not in distress. It is important that she has proper skin care and turning so she does not get sores - if she is in a residential home she might need a nurse coming in to check on this.
I do know how distressing this phase can be and send a handhold.

On the subject of when to provide food/water or not at this stage, I had Power of Attorney for my OH and asked that he simply be kept comfortable when he was in a sleepy state. Initially antibiotics were proposed as an infection was suspected but I said no to that - when conscious he was in so much distress and I had no wish to see that prolonged for him. Hospital was suggested but he would have been terrified. None of the medics opposed my decision and he slipped quietly away.

I am sorry to hear about your Mum. It happened to both my parents one after the other as there was a large age gap. Very many people carry on way beyond what is kind and I ended up wishing the end would come many times. I had very many false alarms but pneumonia ( the old man’s friend- harsh but true) got them both in the end.

Awful though it is, it is good your Dad now has a bit of breathing space. Dementia is very cruel.

Oh yes, I had PoA and refused antibiotics and hospital towards the end.