Are we in the end stages of advanced dementia with Dad?

[Vcal2017]

My Dad turns 85 tomorrow. He is in a care home with advanced dementia. He is doubly incontinent, has trouble standing, can hardly walk without tipping over and mostly babbles. He has really slowed down on his eating and drinking of late but still manages about 2-3 glasses of thickened meal fluid stuff each day. He’s lost 6 kilos in the last 3 months but only 1 in the last month. He sleeps about 75% of the time. My gut is telling me that he can’t go on like this for more than a couple of months, but he’s been ‘living’ like this for the last 3-5 months so much so that palliative care discharged him. Are we in the end stages? Can anyone relate? I’m struggling to understand how to keep ‘normal’ living ie: making future plans for Christmas etc, while this runs alongside.

I think you need a straightforward chat with the head of his home. They can usually see the writing on the wall as they are so familiar with the progression and with people slowing down.
My Mum had vascular dementia but wasn’t at the stage where she didn’t know us, she could still chat about things. The head of her home told me a few months before that she could see that Mum was gradually shifting into the end of her life. Your dad does sound as though he doesn’t have a lot of time left, I am sorry. Sleeping more, drinking less are key signs. Everything just slows. Talk to the home about end of life care, my Mum stayed in the home, but some people do go to hospital. I didn’t want that for Mum, and they managed it all really well. It’s so hard I know.

@Vcal2017 I’m so sorry you’re going through this, the not knowing how long is really hard because you have to live too 💐

Our Dad had days but in the context of sleeping 75%+ refusing medication (including diabetes meds) as well as food and drink. We now think he was losing his swallow and got an infection. There was a lady in the same nursing home who lasted weeks on nil by mouth and it sounds like they are getting a few calories into your Dad which might keep him stable.

Good advice I had was: if he is changing day by day then he has days left (week by week = weeks left, or month by month = months left). Be very firm about hospital (or no hospital) as you think he would wish. Dignity and comfort were our priorities and I knew from experience that hospital meant neither dignity nor comfort.

If palliative care have discharged, does he have end of life medication the nursing staff can use?

It was also really helpful - if the home haven’t asked already - to be told to choose a funeral director and note whether our Dad was to be buried or cremated.

Palliative care specialist services will discharge patients who don't have complex needs, who's needs can be well met by the care home staff and symptoms are under control. This doesn't however mean that time is not short, and if things get trickier they can be involved as needed.
The GP and care home staff should be able to give some guidance on how they feel things are progressing, but usually if you are seeing changes these can be significant.
I hope your dad has as comfortable time as possible.

Awww that sounds really difficult @Vcal2017
it sounds like he may be moving that way.
though DP’s uncle has been in a very similar state, unfortunately for around a year.

I went to visit today ( his 85th birthday). Couldn’t really rouse him. Care home staff said they’d tried to get him out of bed and into the front lounge area but he kept falling asleep. His eyes were open here and there for a few seconds and at one point he tried to get out of bed but the effort of moving his legs seemed to exhaust him and he went back to sleep. I brushed his hair and put some music on. I think it’s coming.

@Vcal2017 wishing you strength 💐
Do you feel like they are forcing the thickened meal fluid into him or keeping him comfortable so he doesn’t feel hungry or thirsty?

I think they might be ‘encouraging’ him to eat and drink. If he was left to his own devices, I reckon he’d probably not do it. I’m trying to focus on the fact that he’s not in pain, not overly agitated. He’s just asleep. I’ve witnessed care home staff spoon feed him ice cream and I wanted to ask them to stop it but I felt embarrassed. It’s a paradox: they want him to keep going and I just want him to be comfortable .

and also thank you - hard to talk to anyone in real life as it’s been such a long time since he was diagnosed-6 years. So thank you

When my relative was dying, (the residents that were on the way out were moved to a downstairs corridor with its own outside door…) I have really vivid memories of the staff virtually force feeding the poor woman in the next room. She was obviously dying, or she wouldn't have been moved there, but they wouldn't just let her be. One more mouthful, Mrs P, go on just one more sip…I really wish I had said something now, it was really hard to listen to but wasn’t my place really. I would talk to the senior staff if you can and make sure they have no more hospital trips and no excessive cajoling to eat on his records if that is your wishes. I’m sorry you are all going through this and hope he is a peace soon.

sending you strength. Hearing goes last so calm music and talking to him may be nice.
I know what you mean about the ice cream. We had the same with FIL. He died not long after they started really pushing him to eat. We couldn’t speak to staff as my DH’s sister was in denial and thought he’d recover so needed his strength.
it was a trying time but he died peacefully and had a chance to say goodbye to many friends.

Thank you. I think you are right. I will speak to them about not spoon feeding him. It’s hard to learn to speak up but him drifting off listening to nice classical music would be the ideal way for him to go. He always had music on at home: they had turned the radio off but I turned it back on. I also brushed his hair with his soft brush and he seemed to like that.

They might have been waiting for relatives to arrive? I've seen that happen before

I am so so sorry, it’s so hard. Nobody can tell you for sure, unfortunately some people live a long time like this, though if his inability to swallow is progressing and you’re clear you can refuse tube feeding then that will bring an end to his life.

my dad was similar and died quite unexpectedly a few months ago. We miss him dreadfully, but he would have hated how he ended up.

sending love and strength for the difficult times ahead.

I’m so sorry, my MIL lived another 3 years at this point, eventually becoming bed bound. She carried on eating her thickened food until the end, never losing much weight.
She just died of organ failure in the end, all very suddenly after eating her tea at 5pm she passed away at midnight. Just a sudden change in her breathing.

I'm sorry OP. If your Dad does stop eating and drinking, make sure the home are on top of mouth care. Best wishes x

Things have moved on. The GP has said he’s at end of life stage. Tonight we went and he was so distressed, crying out for his Mother, clearly terrified. He had soiled himself. He was gripping my arm begging for his Mum. I’ve never seen anything so upsetting. I had to call for a nurse and make it clear that he needed medication as that level of distress was unacceptable. He’s now on medazolan and 0.5 mg of morphine. I’m exhausted and sort in a weird state of shock.

@Vcal2017 that sounds so distressing. I am so sorry. I hope his end comes quickly and is as peaceful as possible. Sending love.

He will slip into a deep coma now and the midazolam and morphine should calm him. Keep his music on and be firm with the home to keep on top of the morphine and midazolam x I’m so sorry op xx

Sleeping away to nice classical music is how my dad would love to go. I can't think of anything better.

They are giving him morphine more regularly now. He has moments of distress and agitation but they soon fade. I don’t know how long this time will be, but I am trying to go there and sit with him as much as I can.

It does sound like he may be very advanced, but dementia decline can be painfully unpredictable, with people seeming close to the end and then continuing longer than anyone expected. I’d ask the care home or GP for an honest review of what signs they’re seeing and whether palliative care should reassess him if eating, drinking, weight or alertness changes again. For future plans, I’d try to make gentle, flexible plans rather than putting life completely on hold. Living in that waiting space is exhausting, and you’re allowed to keep some normality around you.

My dad died at the end of March. He had been confused and agitated, but towards the end, he just slipped away. It's so hard, saying goodbye to a parent. Sending you love and strength.

I’ve been there myself, and it does sound like the end is very close. I’m assuming he is no longer being fed or given fluids? The final stages of life and be unsettling but try to get some comfort in the fact that he will not be in pain or at all aware of what’s happening.
With my stepfather, once the doctor had confirmed he was at end of life, he remained in bed just drifting off over a couple of days. We (my DSiS and I) sat with him with his favourite songs on and chatted about his life with my mum, why had died 2 years earlier. The staff in his care home popped in to say their goodbyes over the few days, which was lovely. Eventually we became aware that he had completely stopped breathing (before that his breathing was very spaced out) and the staff confirmed that he’d died. It was so peaceful.

Hello everyone. My Dad died at 3 am last night. Not sure of the day as all the days have blurred into one long tumultuous day. We had a meeting with palliative care who took it upon themselves to reduce his morphine dose. So in the midst of watching his painful laboured breathing for hours upon hours, I then had to convince the nurse to raise it. He lasted a long while. In the end he wasn’t even there: he was breathing but he had long left. My hearts a bit broken. He was the best of my family.