Severe dementia care at home

Me again… I’m absolutely at my wits end with seemingly no way out until such time as the hospital decide what to do.

As you know, Dad went into a nursing home in March and of course nobody can say for sure why but he has seriously deteriorated since then. The current situation is that he is STILL in hospital and nobody can tell me what they are looking for in order to discharge him. The nursing home have implied that he may well be bed bound but that the hospital won’t discharge him until they have ‘sorted out the delirium’. I keep asking, and getting nowhere, how do they know if / when this is permanent? Surely they can’t keep him until they’ve run out of alternative options? This is exactly like what happened just a couple of weeks before, when he was in hospital with his back.

Although the delirium & hallucinations seem very sudden, I can see looking back that there were signs since he went blind in December. We now seem to have moved from being lucid most of the time to being confused most of the time & this seems fairly stable. Personally I think this is his new base line. The difficult part is that I don’t believe we / they can’t get him to drink enough to maintain his own fluids but it only becomes an issue when he gets dehydrated enough to get very delirious. He’s been off of the IV since Thursday and I can already see changes in his skin, lips, and today his confusion.

Ideally I’d like to remove him from the nursing home but that of course leaves me with caring for him. He can no longer manage to sit in a stair lift and we have no downstairs shower etc. I know nothing about dementia, especially not with someone who is already virtually bed bound. If he came to live with us what would I be looking at in terms of progression of care needs? How do people look after someone on their own if it takes two people to move them? I’m going to do a separate thread for POA as I don’t have the power to move him anyway I don’t think but I’d like to have an idea of what I might be taking on again now that his needs have changed so much.

Thanks all x

Hi Henry’s Cat.

From everything you’ve said, I honestly think you’d be taking on far too much at home. Think of it this way: you knew you’d struggle before this deterioration, which was why you went down the care home route. If it wasn’t really viable then, it certainly won’t be now.

You’d be in a state of collapse in very short order without a lot of help coming in (possibly even with it), and that’s no place to be.

This is one of those times when the worst thing you can do is think with your heart, and not your head.

I just feel so helpless. He’s not being looked after in the hospital and I’m not convinced he’ll be looked after in the home either. It feels like he is being kept alive artificially on this merry-go-round of dehydration - hospital - fluids - discharge. He’s not in a position to say he doesn’t want to go to hospital anymore because he doesn’t even know he’s in a hospital now.

It’s a different situation now to before he went into the nursing home. My brother is about to move to the other end of the country so I’d be doing it alone (which is actually easier than being let down all the time), but I’m sure that it wouldn’t be for long whereas before we thought we could be in that situation for many years. I was struggling for time because of dealing with all his other admin etc and fighting for help for his various conditions which nobody seems bothered about now. Also we couldn’t get assistance with care because we were trying to pin them down to a time due to his Parkinsons meds. Having been in hospital for 6 weeks out of the last 8 I can see that it no longer matters what time he has them but also I’d be there full time anyway so any assistance would be with lifting, washing etc. I have no idea of what equipment can help with this if you’re on your own or what people do when they are left alone for hours in what could potentially be wet / soiled incontinence pads etc.

Look at his NEEDS. A team of carers now someone always awake you cannot do this. It’s impossible. Incredibly sad, the worst possible situation and it will only get worse, not better. You can still spend time with him, but can also look after your own physical and mental health too.

Feeling helpless is par for the course when things get to this stage. And feeling guilty. And I think a lot of what you’re going through at the moment is driven by an unreasonable sense of guilt over what your Dad is going through.

If he’d been at home at the time, it would have been impossible to deal with, and probably not safe for him or for you. There have been a lot of changes since then, and your Dad is needing a lot more than one person can reasonably give right now. I’m with BB on this: you can spend time with him without being responsible for his care, and that will give you the time you need to look after your needs. Those needs can’t be put on hold: I’ve worked with carers who have taken on what they thought was going to be a short term situation - a few months at most - and they’ve gone on far longer, in one case almost 20 years. The long term effects on those carers were, predictably, enormous.

I try very hard to stand back when people have a decision to make: it’s your decision, after all. But in this case I’m seriously concerned about your health as things are, and the effect on your health if you take on caring for your Dad. You’ve had a really rough 6-12 months and you need to step back and give yourself some time.

This sounds like an incredibly upsetting and frustrating situation. I can hear your love for your Dad, and desire to ensure he is well looked after. It seems that deciding to care for him yourself at home would have like changing implications for you both.

What does your Dad need?

Needs wise I’m not 100% sure as we’re waiting for this X-ray on his back to decide if he can mobilise without the back brace which makes things easier. They finally got him standing on Wednesday so in theory he needs 2 people to stand him up and shuffle / use a rotunda to transfer to a chair. They’re not bothering to do this now as he currently seems quite happy laying almost flat in the bed, plus he’s quite sleepy and of course the hospital chairs don’t recline at all so it’s not safe to leave him. A clear reason for people getting worse in hospital! Other than a failed attempt in the first week and this tricky one this week, he hasn’t wanted or needed to move other than to roll from side to side to change sheets,

He’s semi-continent - now that he’s more lucid again he usually knows when he needs to go but of course staff don’t respond in time in homes or in hospital. He wears a pad but he’s the opposite of little and often so the pads can’t cope. The diapers in the nursing home are better and don’t leak so much. He gets very constipated & hates any of the ‘jollop’ they give him so he has to have laxatives that then have a sudden effect. He likes Fanta and I take a ‘jollop’ that tastes rather like it but it involves an effervescent multivitamin so the care home won’t even ask the GP if it would be okay.

He used to love his food and he still talks about food a lot and what he’d love to eat etc but apparently everything tastes funny. He can’t close his teeth together anymore so he takes 2-3 minutes to eat a teaspoon of mash with the tiniest piece of meat on it. They won’t put him onto a soft diet so he has 2-3 spoons and then gives up. Sometimes they have also given him a soup and he’s managed that but he can never remember what he’s had or asked for so isn’t in a position to get the right things. After 2 weeks in hospital including a week on fluids, and still now being monitored for fluid management, they still consider him to be dehydrated. The combination of difficult nutrition / fluids / toileting means it all needs careful management and both hospitals and care homes just can’t commit the staff. They’re also bound by ‘patient choice’ so if he wants something from the tricky part of the menu he can have it whereas if he was at home I’d ask “would you like this or that Dad?”, or when he wanted something like a sandwich (which he loves and can eat but it takes ages) I’ve got enough time to sit with him and hand him small bits / guide his hand to his mouth while letting him rest in between without rushing off to another person.

The main issue is this conundrum over his challenging behaviour. While he was in hospital with his fractured back it came up for the first time and they put it down to trauma / dehydration. He fluctuated between confusion & fairly neutral hallucinations to being totally unreachable with distressing hallucinations which led to aggressive behaviour. The worst of it tailed off but it came back after he’d been discharged which was what led to him going back in this time. Since then he’s been content in his bed but I have seen signs in the last couple of days that it is increasing again (of course nobody is listening!) Nobody knows if this is going to happen again or if it’s coincidence and the hospital are saying he’s fine to go home apart from the x-ray and the nursing home are saying this delirium etc needs more monitoring. I hate being in limbo!

What an awful situation Henryscat, so frustrating for you.
it would be so good if he could reach equilibrium for nutrition and fluids.
How the heck can they expect you to care for him at home when teams of them in hospital or a home can’t do it?!
Pre covid, if my mother is in hospital and too ill to feed herself, they kindly let me go in and feed her meals to her, she ate very little because it was hard work but then as she improved she a little more and then began feeding herself.

Hi Henry’s Cat,

its so tough; one person can’t deliver the level of care he needs but the teams caring for him haven’t got the care right either yet. I have this constant battle with S’s college day service - I’m constantly having to remind them about the most basic stuff.

I think its a case of battling on pushing for his care to be as good as it can be. Getting the care plans in place regarding how his fluid, dietary and toileting needs are going to be better met.

The sooner the hospital and home accept that his delusions are linked to his dehydration the better. Constipation can affect behaviour and not moving won’t help that either.

Since you aren’t adverse to caring, would you visit him for one or two meals a day and help him that way?

The sooner he is out of hospital the better.

Are his teeth his own? If he has false teeth could they be improved by a home visit from the dentist? (My Mum eats terribly and needs a new bridge (hers is broken) but we have so far had no luck persuading her to get a new one …I’m sure a lot of her food choices are down to her difficulty chewing.)


Last Wednesday after I posted the previous message, the doctor told me that it was JUST the x-ray (which he was ordering there and then… no idea why it taken another 2 days) but that there was nothing else they were looking for. The nursing home said no, they were still concerned about the delirium and we came to a sort of agreement that between us we would push for either OPMH or the Parkinsons team to see him as soon as possible. We also talked about the possibility that for some reason he couldn’t maintain his fluids and how many more times did we want to bring him in like this when they couldn’t find a reason. She said that once back at the home they would be able to make more effort with soups, a regular drink reminders, jellys, tinned fruit etc with higher water content.
However when I arrived that evening (Thursday) he was totally out of it, shaking and hot. He knew he’d had an x-ray finally but he said it was at B&Q! I went to find the nurse to say something was wrong but they weren’t bothered. I’ve been going in every day to feed him at least one meal as I live half an hour away & I had a parents evening so I was slightly late. His dinner was almost cold & nobody had tried to feed him. The poor chap in the next bed didn’t get any help either and so missed his dinner completely. I had to help to change Dad’s bed, to move him, clean him up, do his bottle etc because they just don’t have the staff there. How crazy is this?! I’d been there about an hour & they came to do his insulin and discovered he was having a hypo. Dad has NEVER had low blood sugars before and we were trying to force sugar down him, giving him glucose gel etc except that they wouldn’t listen to what he could eat and kept bringing hard biscuits. In the end I was told to push a Malteser in the side of his mouth and let it break down. All the encouragement to drink, eat this or that etc was all down to me. Dad was either totally out of it or refusing to comply and getting agitated. I could see them swabbing a chap on the end who had spiked a temp and heard them saying another chap had been moved out because of covid.

You can guess what happened next… I got pinged the next morning saying Dad had texted positive for covid because my phone number is on his records. I spent over an hour trying to get through to the ward to see what was going to happen now and the results were news to them… Honestly it’s farcical. The room then closed so the poor people that were negative are now locked in with the covid crew. I now can’t get any news because the nurse I need to speak to is in the room and can’t come out, the doctors won’t call back. I’ve had symptoms since very early Sunday morning but I’m still testing negative so we’ve got another set of tests to try. I’m horrified that as carers we can’t access free tests even when something is in hospital! I know I don’t count as a carer but actual carers should be able to get them free.

So now I’m back in limbo - in theory I can’t see him until next Sunday and I can’t get hold of anyone other than them telling me “he’s eating and chatting and the doctors are happy with him.”. Grrrr!!!