Please help me - Dad with dementia very severe very quickly

For issues specific to caring for someone with dementia.
Hi all

I'm hoping for some advice on a situation regarding my dear Dad.

He has had dementia for about 5 years, the last 4-5 weeks it had become much worse. W/c 13th November he developed a very bad back, lots of moaning, literally couldn't move etc. Got the Doctor out as he had started to become extremely bad very very quickly - weeing in the cats food bowl, trying to wee outside, thinking strangers are in the house, very aggressive with my mum who was terrified, locking the door and then hiding the key, trying to get out of the house at 7am in the morning leaving the door wide open, unplugging the telephone, convinced people on TV were changing their hair style in between adverts, tearing at his head/face, being very agitated if I was out and arguing with my partner for not caring that I was in danger, thought they had a baby in the house, it goes on and on and was much worse at night.

The Doctor saw him in a confused state and gave him some AB's for potential lung infection, painkillers for his back and got a urine sample.

After a battle with the same Doc on the Friday (17th) he finally agreed to send him to A&E to see a consultant who initially diagnosed delirium due to the speed of the decline. Now various tests, CT scans and so on they believe it is simply his dementia getting much, much worse.

A social worker has called Mum today already discussing his discharge and is talking about support at home. This is not an option as my Dad was already becoming violent if he thought there was someone else in the house, and he needed help going to the toilet/bath etc and my Mum suffers from anxiety and already the thought of this is making her ill, plus I know it will start off as support that will slowly fizzle out leaving my Mum to mostly care for him. She wont be able to ever leave him alone as hes dangerous to himself and others and her health is quite poor with depression, high BP, high cholesterol and she has limited mobility.

I so wish my Dad could come home where he belongs but he, or his actions, will end up killing my Mum, that is in no doubt, so we need to be practical and think about whats best for him, and I think whats best is a care home where he will be with others like him, trained caregivers who know the signs to look for so can diffuse his anger and be looked after properly without any risk to himself or my Mum. But I've got a feeling we are going to have a battle over this home care thing which just isn't an option, for him or my Mum.

Please can anyone help me with what might happen now? Assume they will do some sort of assessment where it surely should show up that he cannot be at home?

Thank you in advance.
There are others here having similar battles.
Does anyone have Health and Welfare Power of Attorney for dad?
Google NHS Continuing Healthcare and read the checklist, in fact read as much of the Framework as you can, especially the bit about the Grogan case.
I would suggest that from now on mum puts you in charge of all conversations with the hospital. It is now the time to act like a "Stuck Record Player". Keep repeating the same phrases over, and over, and over again to hospital staff.
NO dad CANNOT come home.
NO mum will NOT care for him any more.
No I will not care for him any more.
INSIST on a CHC assessment.
It's going to be tough, but you need to win this fight. Come back here as often as you like, you will get lots of support from others.
Thank you Bowling

no power of attorney or anything like that as it wasn't that bad until recently (mums been very VERY in denial about it until now, Ive been saying for a long time he needed assessing or something but as the hospital had discharged him about 3 years ago with "suspected vascular dementia" with no follow ups she thought that was that :( )

Totally get the Stuck record thing and thats exactly how I thought I should approach this. The hosp said they had to sign some order to detain him as he was trying to escape the ward so that must go in our favour.

I do feel awful battling against him coming home but Im genuinely coming from a place of concern for him and my mum as a joint first, then the wider family, then the public. I'd love him to be back in his own surroundings with people who love him but its sadly not going to be an option.
Sam, it's really sad for all of us with elderly parents living what I call a "half life" , heart still beating etc. but no quality of life left at all.
Our parents all lived very close, my children were lucky to enjoy all their grandparents as they grew up, we all met as an extended family very regularly. Then they all went downhill, at one stage all four were entitled to highest DLA, but one was too stubborn to apply!
At this stage in life, what we want and what someone NEEDS can be very different, concentrate on needs.
Keep a notebook or diary with all dad's behaviour in it. Note the name of who you speak to, date, time, and what was agreed. This will be invaluable in your fight.
Also keep mentioning that it would be an "UNSAFE DISCHARGE" to send him anywhere other than a secure home.
If dad was diagnosed with "suspected dementia" 3 years ago, he might be entitled to a Council Tax refund backdated to then, as those with "severe mental impairment" are exempt.
PS How old is dad? Mum? You?
sorry can only answer quickly for now as am in work but will respond properly later.

My Dads 70, Im 37 and Mums 65
It's really sad that dad is so relatively young.
I can't understand why, given his age 3-5 years ago, he didn't have any follow up appointments. Can I ask why he went to hospital then? Did he have any scans then, or had any more recently? If not, ask for them to be done now. Apparently there are many different types of dementia, medication works better for some than others, so a scan is vital.
No wonder mum is in denial, I'm the same age as her, I'm sure her health issues will be directly related to the problems with dad. Hopefully when she can take more care of herself it will be easier for her.
Also have a look at the Alzheimer's Society website, it covers all forms of dementia and is apparently very helpful. I know in my area, the New Forest, they have their own support worker.

(No need to reply till this evening. It's easier for me to type during the day, when I use a keyboard, rather than the tablet I use in the evening).
Hello Sam
My husband is in a nursing home because of strokes and vascular dementia. He hasn't been home with me for 2years now. He is 72 I'm 67 , my daughter's are 48 and 41. I'm explaining this because of the similarities. My husbands Dementia too was a very quick decline. Your head is telling you that home is no longer the safe or right place for your Dad to be. Please don't let your heart rule, very hard as it is. Download the Continuing Health Care tool, it's helpful to know in advance, the checklist. I too was in denial for a while, anything but, I would say to myself. Retirement shouldn't be like this, and my daughter's feel robbed of their Dad. We've had to learn, needs, not wants.
Stay strong, and you will get the best care for your Dad,. Lots here will have practical advice for you.
Hi - several things to consider.

Will your dad be self-funding if he goes into a care home for dementia? Remember, that the assessment by the local authority says that if his (note HIS, not jointly with his wife!) are more than £23,500 then he has to totally self pay. Below that the LA funding starts to kick in (I believe it takes over completely at around £16k?)

If your parents own their own house/flat, then HALF the value will be assigned to your dad (ie, not the whole of it). Plus, I believe - others here will correct me etc - that if your mum is still living in the house, it cannot be included (until she dies or moves out) in the financial assessment (though I think the LA can put a charge on it!).

So, that is the first issue - will he have to self-pay?

Now, if he does, you may well find 'everyone' (ie, doctors, hospital, social workers) blissfully happy to recommend he goes into a care home! It's no skin off their nose and they won't have to pay anything. (In fact, if 'most' of dad's money is in the value of the house, and not in ready cash/savings, then they may be extra glad, as care-workers coming in to the house to support him after hospital discharge may have to be paid by the council!)

However, the reverse is true if he is to be funded by the LA in his care home! Then they will fight tooth and nail NOT to place him there, but to 'chuck him back home' again for YOU and your mum to cope with (maybe, yes, with the offer of some care-workers coming in .....!)(or not.....)

The next issue is - would you dad AGREE to go into a care home anyway? If he does, no problem. If he doesn't then that is a potential problem as UNTIL his dementia is so advanced he is deemed by the medics to have lost 'legal capacity' to take his own decisions, he can continue to refuse to go into a home.

Again, IF the LA isgoing to have to pay for him to be in a care home, they will argue he DOES have legal capacity and' hey presto!' wow, that means he can CHOOSE to go back home (and save them a fortune!)

So, IF you have a 'worst case scenario' where your dad (a) is entitled to LA-funding in the care home and (b) refuses to go into a care home and is deemed to have legal capcity to make his own decisions, you and your have no option but to play Hard Ball.

Hard Ball consists of BOTH of you (especially your mum!) continually REFUSING to have him back home - until you are blue in the face!

IF the worst comes to the worst, and they insist on putting him in a taxi/ambulance and sending him home anyway, then:

(1) change the locks/lock the house up

(2)Get your mum physically out of the house.

(3) KEEP her out until your dad is put into a care home.

Wishing you all the best possible, J
Although it's a huge thing for your dad to move to a care home, do bear in mind one option that MIGHT be possible.

If he 'lives permanently' in the care home, he MIGHT still be OK to, say, come home for weekends, or something like that. It will depend on what he can cope with of course, but this is something I did with my MIL when she first went into a care home. She came back to me for twice-weekly sleepovers. I found it a workable compromise between me 'giving up my life to look after her' and not 'abandoning her to a care home'.

Sadly, she is now deterioriated so much it's no longer possible.

For a while I was able to take her out for nice drives in the countryside, and by the sea, and we had cream teas out, then I took her back to the home again. That worked pretty well for a couple of years.

So, again, it may not necessarily need to be 'all or nothing' - HOME or CARE HOME. (They won't reduce the fees, alas, if your dad comes for sleepovers!)

Also, if your dad is very agitated, they may prescribe something like Diazapam to 'calm him' - they have to be careful as it relaxes the muscles as well as the mind, and so they can be prone to falls - it's addictive, but to my mind, if it makes them happier and more content, and their quality of life is better, who cares?!!!