Alzheimer's- my poor dad may be dying

[Beeskneesbaby]

My dad has had Alzheimer's for about 12 years now, he's immobile, doubly incontinent, can only say a few words and doesn't recognise any of us. He's been put to bed in his care home as he's gone a slight yellowy colour. He's still eating a bit but is sleepy and unwell.

Has anyone else experienced this? The care home staff are very guarded and are waiting on some blood tests. I'm ready to be told that this may be the end for him - he has no quality of life at all and it may be the kindest thing for him. I just cannot get an answer from anyone! Any HCPs or care staff with experience of dementia know of this is usually the beginning of the end? The not knowing is worse 😞

So sorry. My dad died 2 weeks ago from vascular dementia (but he had other major organ failure going on too.)

He had a fall and was taken to hospital to be checked over and never came out. He lost more mobility and simply wasn't cared for or encouraged to walk as much as he had at home with my mum. They were waiting for a care package to be developed so he could return home but in the meantime he got worse.

Within a week he stopped eating. He couldn't speak (though he could when he went in, with difficult.)

We had a frank chat with the duty dr who said he had 'days' and he died 3 days after that.

He was asleep most of the time, mouth gaping, eyes shut, breathing very heavily and was also agitated.

He was on a saline drip but we asked for all other obs to be stopped as there was no point (blood tests, BP etc.)

I think if he carries on sleeping, is unaware of you and not eating, he won't survive long.

Sorry

Feel free to ask me anything else or PM if you prefer.

Hi OP,

I'm a senior at a care home and I just wanted to say sorry you're having to go through this. Nothing will ever prepare you, and it really is awful

IME, and I've only worked in care for 6 years, if he's still eating that's a fairly good sign. The beginning of the end is usually when they stop giving any food at all and just small amounts of water and mouth care. They would also start him on end of life medication, which is basically stopping all medication except pain relief. Sometimes they have a syringe driver fitted which constantly pumps pain relief into them. However, we've had residents at this stage who have come around so even then it doesn't necessarily mean it is the end. I think these sort of things sometimes are just a waiting game. And that's so awful for you. I really am sorry.

I hope you get good news and I'll keep you both in my thoughts.

Thanks, I'm a bit annoyed, been to see him today and they've dressed and hoisted him into an armchair in the lounge. He's clearly unwell and can't stay awake for more than a few seconds. He's slumped over in an armchair. He looks dreadful and obviously yellow. I asked why he cant be kept comfortable in bed but was told he was brighter this morning and had eaten breakfast. Surely at his stage he can be kept comfortable? All the care home seem to worry about is getting all the residents up and dressed regardless. My poor dad.

@Beeskneesbaby that is probably my biggest pet peeve in my job. It's all about whose up and out of bed. If you want your Dad to stay in bed, even if it's just for a few days to see how he feels, then you tell them that. It's up to you!

They did say they’d put him back to bed after a few hours but I’d rather he stayed there all the time now he’s ill.
What benefit is dressing him, moving and hoisting him into an upright armchair when he’s probably more comfortable laying down and comfy. He has very good care but there’s far too much of the pushing of food, getting him up and in the lounge just for him to slump in his chair and sleep.
He’s double incontinent, completely immobile, has no cognition at all, hardly speaks and cannot even focus on a face for gods sake. Worrying about keeping him entertained at this stage is way too late. I just wish I could have him home so I could nurse him in bed where he’d be comfortable. A lot of it is so they can all be kept an eye on in one place I’m sure. Makes me mad.

Sorry I’m being so selfish, ICanEmpathise I’m so sorry for your loss, it’s so very hard this illness. It goes on and on and on and even though you love them and don’t want to lose them you hate seeing them like this. Take care of yourself, sending lots of sympathy and condolences x

Justanothernamechange thanks for your kind words, im sure you know what I mean - I’m grateful for everything the carers do for him but he’s not getting better. If him laying in bed doesn’t suit the rules of the care Home then tough, I just want him kept comfortable.

Has a gp been out to him? If he's yellow it sounds like jaundice/liver failure. The gp can also review his meds whilst there. I've never worked in a home but I have been a carer for 10 years and my uncle died of alzheimers 2 years ago.
The home should be doing as you/your family wish (within reason) so be firm and tell them he's not to get out of bed plus if he's not with it they shouldn't be hoisting him.
Does he have a DNR? Do the staff know his wishes and who advocates for him as I assume with having it for so long someone does. They may be the best person to speak to the home.
First port of call though GP out to him
Good luck and sorry your going through this it's awful

Speak to the carehome manager and ask for the doctor to come and see him. Tell them that you see no benefit in him being hoisted into armchair as he is drowsy and ask if he has been seen by the palliative care team, what are the medical plans now and ask to see his care plan if you are next of kin, do you have power of attorney. You can also call his doctor yourself and ask what is going on. Do not let the carehome bully him or you.

Thanks OP.

We wanted to bring my dad home but there was no way we could get a care package set up soon enough (so he could be discharged.) My mum desperately wanted him to die at home. We wish we'd used our POA to bring him home anyway.

TBH he went downhill rapidly in hospital. Bedrest/ being in bed does do a lot of damage to the elderly (I read last week a dr saying 10 days in bed aged an 80 yr old by 10 years) so if your poor dad does stay in bed, it may hasten the end - not necessarily bad if he is suffering.

I agree with the others that a GP ought to be on the scene and not just carers. Is this a nursing home with nurses on duty? Have they offered to phone a dr to look at him? My dad started refusing food about 5 days before he died. Up until his admission to hospital he was eating well- 3 meals a day. His dementia wasn't as bad as yours by the sound of it, except in his last few days.

Sending you my thoughts .

Yes, I have POA. The GP came to see him yesterday morning and ordered the blood test that was taken. We have a DNAR and advanced care plan in place which states that we do not wish for any hospital admissions for treatment, he is to be made comfortable. I think I’m going to have to be a bit firmer about him being moved, they make me feel guilty as the nurse is adamant it’s better for him to be out of bed. Better? He’s in the end stages of dementia, nothing is going to make him better now!!
The nurse I saw today said he’s eating so don’t worry. I honestly think they are holding judgement till the blood tests come back.

I am glad he saw the Dr, call the surgery on Monday and ask if results are back and what treatment is or is not appropriate. If he is unwell and drowsy then being hoisted about won't make him feel better, why can't he just be sat up comfortable in the bed which I assume has electronic controls and a pressure mattress. Ask to see his food and fluid charts so you can get an idea of how much he is having. Nurses can be bossy and you may well be right about holding back until they have the blood results but the results will go to the g.p. not the carehome. You can visit the g.p. for a chat, you take care.

Went o see him again today, he's being kept in bed now so I feel happier. Still no news on the blood results, care home will chase them up and let me know. He was sleeping when I arrived but woke up and I had some smiles. He had apparently eaten breakfast but it still very yellow. It's really puzzling, I would have expected him to be feeling unwell even though he can't tell us anything. The care home staff don't seem unduly worried about him so I'm taking hope from that.