Dementia - how long can you live like this?

[tomissmymum]

Realistically … though I think this will be difficult for anyone to answer really..

Mum has young/early onset dementia (FTD - same as Bruce Willis) diagnosed last June. Theh think she’s had it at least 6 years.

She’s not able to do anything for herself - at all, needs full assistance with all activities of daily living. Can’t have a conversation and very little eye contact or response at all, even if you walk in the room. Sometimes a hint of a smile or recognition but nothing else. Mobility is shot as well, she can walk but not well at all - shuffling/stooped and falls a lot.

She’s also having seizures - on meds but an agreement she won’t be taken to hospital if she has them, and not for resus.

I went to see her yesterday and most of the visit her eyes were shut, and non responsive.

They said at diagnosis no one can put a time scale on it but this time last year she could still talk, dress, wash, feed herself and go to loo etc.

I’m scared I won’t see her again. I realise I’m probably never going to get another real interaction with her now, they said once something’s gone it won’t come back but I’m scared. I don’t want to lose my mum.

DNAR will be in place most likely. Doctors do not require permission from relatives to put this in place.

Last week my stepfather’s care home rang me to tell me they were giving him his covid booster. There’s no option for me to say no because I don’t have POA, and the care home aren’t allowed to make that decision either. I did check he had a DNAR in place though, which he does. He has Lewy Body Dementia with Parkinson’s. Diagnosed about 6 years ago and has gone from being mobile and able to converse with us 18 months ago to having no voice, no ability to walk, doubly incontinent and needs feeding. It’s no life.

My mum has dementia diagnosed 6yrs ago and a similar stage to your mum. My mums in her mid 70's although in the past year has aged so much she looks 20yrs older. She was walking up to just before Christmas when she fell over and broke her ribs. After a prolonged hospital stay (crappy system rather than her physical health) she's stopped walking entirely
It is so difficult to know how long they will last in this state especially when they don't have any real physical issues.

With mums lack of mobility we had to move mum to a new care home so took the opportunity to bring her closer to me. It's hard now she no longer speaks but she seems to brighten with music and some things on the tv as well as some visits when she smiles. It's a crappy existence but we try to make her comfortable and bring her treats regularly. I always talk to her as I talk to anyone else because I have no idea how much she understands and I don't want to infantilise her or assume anything.

Some folk who have good physical health can unfortunately suffer for many years. Mum was diagnosed with vascular dementia in her late 70s, she passed away last year aged 86.
The best you can do for your loved one is request a DNAR and I think it called an end of life plan, as in when they start to go down hill, keep comfortable but no life lengthening treatment.
Towards the end my mum declined quite quickly and passed away peacefully in her sleep, as was her wish xxx
Dementia is a very cruel condition and I would wish it on nobody x

My mum died last year, thankfully in her sleep in a residential home.
She'd been living at home prior to that, but was seeing people who weren't there.. very distressing for all concerned.
I was deleting old emails & found some between my sister & myself where mum had been to visit her, & was looking at old family photos. She didn't recognise her nephews, and the emails were from 2013.. I think that was the first sign, & then she developed the 'shuffle' walk..
We couldn't believe it had been developing all that time.. :-(

@Soontobe60 even if you don't have POA for health your wishes can be represented at a best interests meeting. This doesn't mean you get to make decisions but that they are considered.
We only have financial POA as there was a problem with the health one and by the time that was sorted she didn't have capacity.
We have best interests meetings with a social worker, mums GP, her children and her care home. We have discussed vaccination, living arrangements, DNAR and advanced plans. We were forced into it as mum has lots of children with many vocal and polar opposite views but the mechanism is there to make your views known you just have to push for it.
Mind you we had to demonstrate that the views would have been ones that mum would have had and not our own personal preferences. Vaccination was a sticking point for us as a family - some of us supporting, it others of us very much against, so they looked back at her medical history to see what she had done in the past.

Me too re: euthanasia/Dignitas.

Having watched my maternal grandmother (first exhibited symptoms in her very early sixties, died aged 77), my mum (diagnosed aged 75 - although had symptoms a few years before that, died at 85) and my dad (diagnosed with vascular dementia whilst mum's carer aged 84 and died at 86), I'm petrified it'll happen to me.

My FIL also had vascular dementia, but like my own dad, it was thankfully a relatively brief - albeit scary as he had to be sectioned at one stage before diagnosis - decline before he died.

It's a hideously cruel disease and my heart goes out to the OP and anyone else who's going through it either with a family member or themselves 💐