Dad with dementia - critical situation

[delphinedownunder]

My Dad has had dementia for more than three years and things are getting really bad. He kicked off yesterday when being assessed in a local dementia unti and was detained by the police for his own safety. He has just spent much of the day in a cell and now has been sectioned and admitted to a secure unit. My Mum is completely in pieces - she has been trying to care for him at home all along, despite his violence and paranoia. So, i am trying to make sure that the best solution is found to his care - can anyone who knows anything about demontia care advise?

Have a look at the Alzheimer's Society for some resources.
Hope this helps.

The only advice I have is to try to find a really good care home for him and others with dementia. It is a hard decision to make and can induce great guilt in the family, however a good care home can make him feel secure and normal in a way that care at home can't.

alzheimers society are really good.

Try to get someone sympathetic for your mum to talk to. It sounds as if she has been living through a nightmare. Alzheimers UK page here with links for carers

Meant to add, hope you have a sounding board for yourself too. What a difficult experience.

God, your poor Dad - put in a cell - terrible.
And of course, your mum

it is really hard to help as I am on the other side of the world with a 13 hour time difference. Even talking to the medical professionals is tricky and i have forgotten how obstructive medical organisations in the UK can be - it is as if the doctors are gods and I am too stupid to be allowed to talk to them. i had actually been trying to talk to my Dad's GP for 2 weeks before this incident and he didn't call me back, I wasn't allowed to have his email address, i was dismissed by the harridans on reception as over-reacting and now .. well, now the police are involved. Actually the police are the most helpful of anyone dealing with this - they are being really nice, even though he has thumped a couple of them

I don't understand why the police were called, if he was being assessed in a Dementia unit then the staff should have been trained in managing aggressive behaviour. I have never heard before of the necessity of involving the police, that is totally inappropriate for anyone suffering with Dementia.

Has your Dad been diagnosed with Dementia yet? I cannot understand why the doctors have failed to co-operate. What is the assessment centre that he was in? was this a care home?

If your Mum is struggling to cope, then firstly you need to speak to your Dads GP, if he has had a Mental Capacity assessment then the GP should be more helpful.

Your Dad does need to be assessed, but I would question the last assessment unit.

My Dad was diagnosed with vascular dementia three years ago. He was being assessed (a) for eligibility for respite care to give my Mum a break and (b) to ascertain the progress of the disease particularly in respect of violence. it is my understanding that the police were called because he kicked down a door and ran outside shouting and swearing. He then thumped my Mum. I don't know about the appropriateness of this action as I was not there and I am not a medical professional. The doctor is NEVER available when I call and will not call me because the phone call is an international one. I am not allowed his email address and whilst I have given the reception staff my email address more than once, I never recieve anything and they always claim that the address 'doesn't work'. My Mum is more than failing to cope - she is living with a man who can no longer hold a conversation and who is regularly violent. He is now sectioned under Section 2 of the Act and is in a secure ward. He cannot be transferred to a dementia ward for assessment as he is considered too violent. This is well beyond failing to cope and a mental capacity assessment.

Hi. My Grandad was diagnosed with dementia a few years ago. He was violent to my Nan and I think she hid a lot of his behaviour from us.
Things came to a head when my Nan was hospitallise (for something unrelated) and he was home alone. He rapidly fell apart and when Nan died he started to recieve some help in the home. This soon highlighted the fact that things were much worse than everyone thought when he started to get violent.
My Mum lives in Europe and I live in NZ - so Mum was sort of in the same situation as you, trying to deal with things from abroad. Mum got a lot of help from "Help the Aged" and other organisations.
They all fought so that his saving were not eaten up and he was alocated a place in a good nursing home were he could be looked after and monitored.
His condition means that he can't be cared for at home anymore (even though my Mum feels very guilty about this) it just isnt possible.
So there is hope - he wont necessarily stay were he is at the moment. They will see if he can take some medication to calm him and stop the erratic behaviour and he could end up somewhere much nicer.
Sorry I am not an expert as my Mum obviously dealt with most of this but I thought I would let you know you were not alone!

My heart bleeds for you - and for your mum, too.

I think about 20 per cent of dementia sufferers are violent, if that makes you feel less isolated. Some care homes take violent and aggressive EMI sufferers, but not all of them.

According to a book I read, the family's dilemma in these cases is to get an assessment that establishes the need for professional care but doesn't terrify any home into rejecting the patient.

Alz Soc helpline is very good; also useful is Age UK helpline - human beings talk sense to you.

If yr Dad has been diagnosed with lack of capacity (he may have been) then his various docs must speak to his relations, presumably yr Mum at least. So I'd get together with her and tackle the docs together.

And look after your mum - Dad may not 'mean' to be violent, but the blows and 'thumps' are just as dangerous.

Incidentally, medical best practice in the UK has just been changed to reduce the amount of anti-psychotics given to the senile (there was concern about over-medication).

But in your case I really wouldn't challenge any prescription for tranx your Dad is given. Not at first, anyway, until he's had a few weeks to try them out. His behaviour could improve a lot - which could mean a better care home.

All I can say is look to EMI care.

There was a good website ,the carequality commission (used to be csci)which gave a star rating which helped me tremedously (unfortunately,its stopped now) when my dad got too much for his "ordinary"care home.

The gp said it was the dementia,nothing else, gave him seditives and said find an emi.
I did,and it was the change in gps and the medical staff in the emi, who got dad admitted to hospital PDQ.
Kidney failure and cancer (both long standing conditions)agrevated the dementia, the behaviour.The previous gp couldnt see a terminal case in front of him.

This has not had a happy ending,however the proper care he got in the good emi,was so much better than the care he got from the non specialist care home.
The nursing staff and others, were so respectful to mantain his dignity.If he was aggressive they would put him on one-to-one care.It is managable (although it is nursing emi so more expensive,get yourself referred to a social worker for help with costs)
and is the only way to go.

I dont want you thinking that your fathers condition is like my fathers, (eg terminal)but please, elderly mental health is to be taken seriously and you and your mother are not being deficient in looking at nursing homes for your father.
I wished ide moved dad earlier, they would have managed his physical and mental health so much etter.

My mother has dementia, she lives in NZ, i live in London. She was living alone and it had got to the point where she couldn't stay by herself any more, she was wandering in the middle of the night and was being picked up by the police, she was suffering from delusions and paranoia. I went down to NZ and had her assessed - I arranged everything prior to arrival - not easy, with lots of emails and late night phone calls due to the time difference, but saying that i was only going to be there between certain dates pushed people into doing things. She was admitted to the Dementia Care unit of a Nursing home, where she has been for 2 yrs now. (I looked at the units of 3 places before putting her on the waiting list of the one i liked best)

She was put on medication to calm her anxiety and reduce the delusions and she settled well with wonderful staff.

I would suggest that your father has reached the same stage and he now needs specialist care of this type.

I am sure what we have in NZ in terms of specialised care is similar to here but you may need to come back and sort it out if your mother can't cope with doing it.

Good luck and hope you're able to find good care for him. My Mothers in a wonderful place now, and safe and well looked after which is the most reassuring thing for all concerned.

Hi Delphine. Can I suggest you write to the docs setting out what you want to understand and how you want to be contacted? There is something about docs that seem to respond to something formal written down in front of them when the ignore other forms of communication. E-mails just don't seem to cut it either

I hope your dad, mum and you all get the care and treatment you deserve.

bite the bullet OP: you are going to have to come to the UK for a period of time and

• assess your dad and mum. what is really going on
• talk to the pros face to face
• sort out a care plan and funding

before you travel mug up on the law and the funding situations in UK. for instance was he sectioned under S3 (specifcially section3) of the MHA. If so, and he is later discharged under S117 he should be entitled to free care going forward.

if you mum is elderly and 'in pieces' she's most likely not going to be able to cope. :-(

now is your time.

Just a thought, there are very few of them but maybe an Admirals Nurse may be able to offer some advice:www.dementiauk.org/what-we-do/admiral-nurses/individual-teams-services/

OP - you have my sympathy. My father had Alzheimer's and towards the end got terribly aggressive/violent towards myself and my mother. In the end, after much fighting, we managed to get him assessed as needing nursing care (NOT just residential EMI care which we would have had to fund) which meant the NHS paid for him to go into a home.

The home was not what I would have chosen - and we felt incredibly guilty about not being able to care for him at home - but looking back it was the best for all of us.

I think stubbornhubby is right. You need to come here and help your mother fight for what is best for her and your father. Don't get fobbed off with him being assessed as needing residential care - it sounds like his state is similar to my father's (he was also assessed by various EMI homes who said he was too far gone for them to have even though the psychiatrist and council social worker had said he only needed personal care!

Good luck and wish you find the support and strength to help you.

stubbornhubby, this is unhelpful. I do not have the money to fly back to the UK without borrowing and I do not have the kind of job i can just drop, nor the ability to take paid holiday. I have pre-school twins. Do I leave them? Do they come at the cost of two adult priced air fares? I visited the UK less than a year ago for a month. I am not a millionaire!

Delphine, can you not leave your children with your husband/partner?

I had a 5yo and a 2yo when I went down to NZ to sort out my Mother. It was the only way to get anything done, and was worth the airfare, and the peace of mind. i sorted it all in the space of a week (9 days away, 4 days off work, i also went over a weekend with Bank Holiday here)...

Otherwise do you have other family members than can help, if you set up appointments for assessments etc? All i can say is that its very difficult to get things done remotely, i had to find a way to travel and do it all myself and it all went on the credit card.

If you set everything up before you come, you can get a lot done in a short time.

Good luck.

Hi delphine
I'm sorry to hear about your dad. It must be hard to be so far away and unable to do more.

I'm in Sydney and work in aged care, inc. dementia specific units. I don't know anything about UK health care and services. But I do know that families and carers need and are entitled to support.

I agree that writing a letter to your dad's GP would be a good idea, asking for the information that you need and giving your contact details and a timeframe for their response. Hopefully that will get the ball rolling and you can go from there.

If you feel as though your mum needs assistance in organising things, liasing with HCPs, anything else, do get in touch with the Alzheimer's UK org linked above. An advocate for patient and family who has experience with these situations is like a new best friend if you link up with a good one.

Also feel free to contact
Alzheimer's Australia I'm sure they'd be happy to talk to you and advise on international support.

Take care, JD.

Thanks for the helpful advice. my Dad has just been moved out of mainstram hospital to an assessment centre, which my mum is very happy with and where they are very forthcoming in terms of talking to me. The GP seems to have been left behind for the moment. He is still very unpredictable and has attacked my mum and another patient, although there are times he is much more stable, although rarely lucid. The staff nurse tells me that he is one of their worse cases and he will be there for a sighnificant period for assessment - months rather than weeks. Is it likely that an EMI home would be able to offer care for him in this state?

delphine
it's very, very tough. :-( I have much sympathy for you, having experienced dementia in one of my parents.

in answer to your qus

• IMO this is worth borrowing an airfare for, and begging for unpaid/compassionate leave.

• no, don't bring your twins unless you really have absolutely no alternative. You will up to your ears in caring for your parents, and looking after two small children in a briish winter would make that ten times as hard. Perhaps you have a partner / close friend / relative downunder.

I appreciate I don't know your circs. Perhaps indeed it is completely impossible. but my experience is that this is THE time when the 'healthy' parent needs support from his/her children. for my parent I would say that in their whole life this was the time they were in the most need. Sorry if thats unhelpful.

I wanted to add my support, I also have a mother with AD. It sounds like things have come to a head and hopefully, now this has happened, your dad will be re-assessed and a good careplan put in place.

I've been trying to think of who else you could speak to other than the GP. Does your dad have a social worker that you could ring? What about his consultant at the memory clinic? It might be that they would want your mother to authorise them to speak to you because she might not feel up to it at the moment.

Do you have any siblings in the UK who could also help?

Agree the Alz society is v helpful, and can help you through the details of what you are and aren't entitled too as a family.

I agree it would be helpful to come back to the UK if you can, but if you can't, try and get as much done from where you are as you can. Do you have any other family in the UK you could ask for help - even if its just smeone to hold your mum's hand when she's dealing with the medical professionals.

Violence is normal in the early stages - your mum must be made aware it's the illness, not a sign of her husbands feelings for her.