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Please help - Dad with dementia

(167 Posts)
saddaughterandmum Thu 23-Nov-17 12:58:35

Hi all

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

He has had dementia for about 5 years,and recently it has really developed very quickly. Dont want to go into specifics but its very extreme quick quickly with very aggressive, violent outbursts and some pretty frightening actions that consider to be dangerous to himself and others.

We had to call the GP out for something unrelated and the doc 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 later that week 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 already 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 also quite poor. This would finish her off I am certain of it.

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.

user1471553214 Thu 23-Nov-17 13:05:53

I don’t have any advice unfortunately, my dad is probably one stage behind yours so I’m watching with sad interest and lots of sympathy and support to say I know how you feel, it’s a truly shit and fucking miserable illness. flowers I’m sure you’ll get some sound advice shortly.

Dowser Thu 23-Nov-17 13:10:51

From what you’ve written he should qualify for chc funding and a nursing home
Choose one with mental health nurses in charge

Dowser Thu 23-Nov-17 13:13:05

Acquaint yourself with the DST tool
Search professor Luke Clements video on YouTube
Watch it several times
Remember a well managed need is still a need

If he’s violent he will score high and you should not have to pay
He cannot go home
I’m sorry I’ve been through all of this. Very, very distressing

Dowser Thu 23-Nov-17 13:14:51

Ask me whatever you like. Mum was a self funded and they manag d her aggression but the soiling and smearing got her into an excellent nursing home where she should have been at the beginning
Don’t be fobbed off

trickofthetail1 Thu 23-Nov-17 13:32:40

You will need to be very determined and focussed when you deal with the hospital and Social Services. As he is in hospital he will need to be assessed on the ward, this is the start of the process of determining if he qualifies for Continuing Health Care. Make contact with the staff on the ward and attend the assessment or any meetings with your mother so that as much information as possible is given about his condition and check that all information is written down correctly. As Dowser wrote familiarise yourself with the DST tool. I have also been through this and it is difficult. There is a lot of advice and information on the internet which I found invaluable.

saddaughterandmum Thu 23-Nov-17 13:38:51

Thank you all. Hes been trying to escape the ward hes in (the hosp said they had to sign some order to detain him??), wandering in and out of the other bays wondering why people are in his home.....when we visit keeps asking when he can come home but he has no idea hes in a hospital or why. Its truly harrowing at how quickly its progressed.

Thank you Dowser will look at that. Ive already told Mum to refuse to have him home and not to sign or agree to anything until Im there - unfortunately shes way too trusting and doesnt think the hospital probably just want to wash their hands of him.

I just cant believe this, a few weeks ago he was sort of okish and now this. Delirium sounded scary enough but this is an actual living nightmare

saddaughterandmum Thu 23-Nov-17 13:40:32

Thank you trick will do that.

Got to dash and get some work done but will look back later, Mum should have heard more from the hospital by then too.


Mxyzptlk Thu 23-Nov-17 13:44:01

You're right - the hospital just wants rid of him and doesn't care what happens when he gets home.
Don't accept him coming home however much help is offered. It would be a far worse nightmare for your mum that what is happening now.
Good Luck.

x2boys Thu 23-Nov-17 13:46:07

Did he have an infection because urune/chest infections can have quite a profound affect on people with dementia and can really exacerbate their symptoms , if it is purely his dementia worsening he may need specialised care some nursing homes have EMI care with RMN nurses but i would have a look round some are better then others I' used to work on a dementia in patient unit as a staff nurse

x2boys Thu 23-Nov-17 13:47:15

Urine *

x2boys Thu 23-Nov-17 13:49:34

Had he been detained under the mental health act ?what kind of ward is he on a general or dementia care ward?

saddaughterandmum Thu 23-Nov-17 13:56:09

no chest/urine infection, no fluid on the brain etc all tests for infection clear

I dont think it was the mental health act, some sort of order because he cant make decisions on his own?? He wanted to go home and the nurse said they were going to let him (cant make him stay) but when they asked how he'd get home he said he'd hitch a ride and couldnt tell them where he lived so thats when they did this order. Kicking myself for not taking more notice of the terminology but I was a bit shocked tbh

x2boys Thu 23-Nov-17 13:58:54

Is it the mental capacity act ? a usually Dr would have assessed your Dad to see if he capacity to make a decision and presumably found that he didnt .

saddaughterandmum Thu 23-Nov-17 14:01:45

Yes I think that was it, he didnt have the capacity to make decisions on his own about his own ad others safety (coming back to me a bit now)

(so sorry for dashing on/off)

choccoffeegeek Thu 23-Nov-17 14:03:54

It could be a deprivation of liberty order...? Watching with interest as in very similar position. It's so hard isn't it?

saddaughterandmum Thu 23-Nov-17 14:06:21

Its horrendous, Ive got constant butterflies in my stomach, am not sleeping myself, I dont know what to tell my kids who adore him.......Im so scared for Mum that she agrees to something without knowing what it is (although she assures me she wont)...... Ive got a lot of personal stuff going on myself and Im totally drained and not far off slipping back into depression myself I can already recognise some of the subtle warnings Im subconsciously giving myself sad

daisydalrymple Thu 23-Nov-17 14:11:05

We moved dad to a care home nearly three years ago now, six years after his Alzheimer's diagnosis. Broke our hearts to do so, but he was still so very physically fit and healthy, he continued to go walking every day and would forget where he was, where he lived etc. Tried on a number of occasions to get into his childhood home. Me and my sister had spent the previous 12 months in shifts between 9am-10pm at his house as he couldn't be left alone.

Dad is in a lovely EMI Nursing home now. He needed EMI Nursing, rather than residential, due to his physical fitness, as he was always trying to get out and his behaviour was challenging, so he wouldn't have settled in a residential home. (He had a few days respite care trial in a residential home, they told us they would manage no problem, and dismissed our concerns, but they actually couldn't handle him at all and on the strength of that, everybody started listening to us and he was reassessed as needing Nursing care).

We did have a lot of help from the social worker, from reading on here since it would seem we were very lucky, as that doesnt always seem to be the case. I was pregnant with dc3 at the time, and my sister's mental health was definitely suffering, as was her work, both of which probably contributed to the help we got.

I spent a lot of time visiting all the nursing homes before we chose one, something you might not have time to do. Social services should have a list of all the EMI Nursing homes in your dad's area. It would be good if you could look at a few, especially if your dad will be CHC funded, as generally you don't get as much choice if you're being funded. Dad was self funded initially, so we were able to fully choose ourselves (although this was based on availability and some homes have long waiting lists). Dad's health has deteriorated since being in the home and he can now barely walk a few steps without assistance, so he is now CHC funded.

You say your dad has dementia, if it's Alzheimer's, then I would definitely recommend getting in touch with the Alzheimer's society, they were a great help to us, with lots of advice on practical issues. I've also seen age concern recommended on here as providing good support.

It's an awful time, but you will come through the other side. Best wishes.

choccoffeegeek Thu 23-Nov-17 14:11:24

Poor youflowers my mum is his full time carer but had a stroke. I'm just out of hospital myself so had to get my dad into a home temporarily until we know how my mum is. Life can get very stressful so I feel your pain. I've told my children grandpas brain is not working properly so he is not himself and it's hard for the drs to find the right medicine. They understand but are obviously's all so complicated sad

poisonedbypen Thu 23-Nov-17 14:20:34

If they talk about discharging him, ask if he has been assessed for CHC. He won't have been so you can but some time while they do that. If they assess him as eligible they will then look for a suitable home so he will stay in hospital until then (it took 2.5 months to find somewhere suitable for my relative). It will be. DoLs - deprivation of liberty that they will have put in place. Probably an emergency one & they will have to assess him fully for that (needs an independent psychiatrist). Good luck, it's s harrowing time.

saddaughterandmum Thu 23-Nov-17 15:25:41

So just spoke to Mum who has agreed to a care package (one visit in the morning and one in the evening). I could shake her Im so angry, shes allowed them to pressure her, in her words "we have to follow the rules I couldnt say no"

Luckily we have to have a face to face meeting so Im putting a block on this. I feel awful., but being at home isnt in his or her best interests, he needs proper care by people who know what they are doing, not a half hour visit twice a day.

Im taking her to see him tonight, Ineed her back in the state of mind she was in ealierin the week when she agreed he couldnt come home as she cant care for hm

retirednow Thu 23-Nov-17 15:46:27

Poor you, we were in exactly the same position. I suspect the hospital issued a DOLS (deprivation of liberty) to safeguard him so that he cannot leave the hospital and they can keep him there without his consent, it's for his own safety and is regularly assessed and updated. It sounds a very bad idea to have him home, I just can't imagine a twice a day care package will be of any help, what happens when the carers are not there, during the night etc. etc. Your mum really needs to speak to the doctor, the discharging team and say no, I cannot manage, he is a danger to himself and to me and I cannot cope with this. The hospital cannot force her to take him home, if there are problems then speak to PALS.

Mxyzptlk Thu 23-Nov-17 15:50:15

It's such a difficult thing for your Mum to face up to, that the person she loves could be a danger to her.
I hope you can block your Dad's return home, though. It sounds like it would be a big mistake.

Kenworthington Thu 23-Nov-17 16:03:57

Hi op , we’ve been in your position. My dad was dx with Alzheimer’s and vascular dementia in 2009, he was already mid stage by then and to start with it all progressed quite slowly. Eventually he started becoming very aggressive and could be violent with my mum , which wasn’t him it was the disease. I always think she slightly minimised how bad it really was. Anyway in 2015, she finally said she needed some respite and we booked him in to the local care Home that had a very good dementia unit. Once there, THe caters could obv see how bad it actually was and wouldn’t LeT HIm come home to my mum as they also had a duty of care to her too! At the time it was really really hard, BUT it was absolutely the best thing to do. Yes he’s deteriorated further but that was going to happen anyway and it was along time of tweaking the meds’ to get it right. We applied for and got continuing health care. It means we do not have to pay the fees (which are astronomical unfortunately) , you need to ask about it and request an assessment. Initially my mum was funding his care out of her savings but at over £4000 per month the money was rapidly running out. Fortunately when we were awarded the chc, they refunded my mum all the money she had paid in for his care already so we weren’t out of pocket. Good luck it’s a horrible time I know

hiyasminitsme Thu 23-Nov-17 16:06:04

Make it quite clear that you don't feel he is safe at home - put in writing if needed, use terms like vulnerable adult and safeguarding. do not allow them to discharge him home "just for a trial with carers" as they will then wash their hands of him.

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