First post

[Sadfordad]

This is my first post. Hello. I hope its ok to post here as I'm not a carer as such, but a very concerned daughter.
My Dad was diagnosed with Mixed Type Dementia 3 years ago whilst in hospital for a heart condition. Until the beginning of this year, he has been in a very gentle decline but my mum and him have managed ok. Then 8 weeks ago everything changed. He had a fall at home and this seems to have triggered the Vascular Dementia to take over. My loving placid Dad has gone from a kind, friendly joker to and aggressive, violent man I don't recognise. My Mum is his full time carer, although she struggles with Osteoarthritis in most of her joints. We now have social workers involved, carers coming in twice a day, but it just isn't enough. My Dad is currently in a dementia home on 2 weeks respite as my mum was at her wits end, with no sleep. My Dad has physically tried to hit her on a couple of occasions. During his two weeks away he has gone rapidly downhill, and is refusing to take his meds or accept anything other than water. He is very weak and confused and barely recognisable. The home have been dreadful and I fully intend to complain. They say they can't cope with him as he's too aggressive. But surely they are trained to deal with that? And if they can't cope, how will my mum manage when he comes home? I live 130 miles away so feel utterly helpless. I've become the main contact for the social worker as i feel its something I can help with at least. I don't know what the next step will be but I'm really worried and so sad.
Sorry if this is a bit rambling

 

[Shedrech]

hello sadfordad
a warm welcome to TP
you haven't rambled at all - and here is the place the come to share your experience and get support
sounds as though your poor mum is at the end of her tether and you sound very worried about both your dad and your mum
your mum took the step to seek respite, which is so tough for a spouse to do, and is herself at risk from your dad's current behaviour - I think you therefore need to consider her welfare and tell the social worker that your dad cannot go back to the marital home, even with a full care package in place, without putting 2 'vulnerable adults' 'at risk' and as the Local Authority have the 'duty of care' (the phrases in '' are buzz words to use), you need his/her help to find a dementia care home that can provide the support your dad needs - if the current home has said it cannot cope, it may well be that it's a residential home, not a specialist in dementia - it may also be that your dad will need to be moved to a specialist unit to assess his behaviour and hopefully work out which meds/routines will help settle him
I'm afraid you may have to be ready to stand your ground, and get your mum singing from the same hymn sheet - it'll be hard, and will no doubt go against your mum's heartfelt feelings that she 'should' be able to look after her husband, rather than her rational realisation that no one person can now provide the level of care he needs
you can yourself look for another home - indeed, if your dad (not the 2 of them together; your mum's finances are not taken into account) has assets over £23000 (NOT including the house they live in which will remain your mum's home) then he will be self-funding - if you have POAs then you and your mum can go ahead and move him - if his assets are below that amount the LA will at least partly fund and may try to insist you try him back at home with 4 home care visits a day, time at a day care centre etc
this is a link to the main AS site and their factsheets - have a look at no 532 Paying for Care
https://www.alzheimers.org.uk/info/20114/publications_about_caring_for_a_person_with_dementia
sorry, this isn't what any of us wants for our parents and it must be so difficult to organise from such a distance
keep posting - there's a lot of help on offer here
best wishes

 

[Sadfordad]

Thank you shedrech, that's all great information. They only have their home, no other assets. But my Mum has already been told they will take all of my dad's state pension plus the vast majority of his private pension. She will be left with £100 plus her very basic state pension and will have apply for pension credit. But I don't yet know if they or I will be expected to pay anything further (third party top up?)
Since the care home where is currently have categorically stated they won't keep him beyond Monday, he has to come home at least temporarily. The social worker went to visit him last week and was the first to suggest that my mum won't be able to cope. She has already put the wheels in motion to find available places. She is talking about a nursing place? The care home where he is are supposed to be a dementia facility but have been sadly lacking. Within 48 hours of him being there, he had fallen and cut his hand. Both of which we only found out about when we called in to see how he was, they didn't alert us.

 

[Grannie G]

Hello Sadfordad

Please don’t be persuaded into paying a third party top up. It is not the responsibility of a child to help pay for their parents care. If the parent is state funded the LA is duty bound to provide care to meet their needs without asking for family members to subsidise.

 

[HillyBilly]

Since the care home where is currently have categorically stated they won't keep him beyond Monday, he has to come home at least temporarily.

I don't think this is the case - I'm sure others with more experience than I will advise.

 

[Ann Mac]

Hi Sadfordad,

Just want to reiterate what Grannie has said - she is 100% right - and to add the following.

Given your Dad's current symptoms, your Mum is quite within her rights to refuse to have your Dad home on Monday - as Shredrech says, the terms to use are 'duty of care' and 'vulnerable adult' - social services have responsibilities for your both your Mum and your Dad where both of those aspects are concerned.

It sounds to me that with the abrupt decline in your Dad's presentation, what might just be of benefit is a proper medical assessment of his condition in an appropriate setting, before a care home is found. By appropriate setting, I mean in a dementia/emi unit, probably in a hospital. We fought, as Mil's behaviour declined, to get such an assessment for her, and after several months, we finally got it. We did have to fight against early discharge, once she was there - because there is enormous pressure to empty beds, so be aware of that. The admission led to sectioning, firstly a section 2, and then a section 3 (which though we didn't immediately know it, also meant that any after care, including care home fee's, would be paid for under 117 funding, where any assets including pensions are not taken into account) - sectioning sounds scary, but it was the absolute best thing for Mil in order to make sure she was properly assessed. The assessment meant that her medication was properly reviewed (and it was found that many of the anti-psychotic drugs she had been prescribed for her aggressive behaviour were absolutely useless) and it gave time for the medical staff to really see what was the best thing for her. When it became obvious (after a failed attempt to bring her back home to us) that residential care was the only option left, then the consultant was able to firmly state that Mil needed EMI nursing care, rather than just EMI care, and we were able to look for an appropriate home for her, whilst she was still in hospital.

Please don't be bullied into having Dad back home, if your Mum cannot cope. All too often, promised support in the home is not particularly reliable and sometimes its poor. And ther is also the fact that its only for a very few short hours in the day, and your Mum is vulnerable during the rest of the time.

I hope this is helpful to you - good luck and keep posting xxxxx

 

[Sadfordad]

Thank you so much for your kind words. It feels so good having others to talk to that completely understand. My friends have been really supportive but none of them have been through this and one or two say "oh maybe he will buck up when he comes home" They don't really understand that "bucking up" is not an option and that things can only get worse not better. He told the social worker that he'd never lived in the area of the city where my parents live, so I suspect that even though he says he wants to come 'home' he won't recognise it as that when he does. I cannot see a way of avoiding him coming home at this stage, with it being a bank holiday weekend and all, there isn't anyone I can contact now. And in all honesty, my heart breaks at the thought of leaving him there any longer than is neccesary. I know that must sound really selfish. To add to it, I'm away on Monday for 4 days, booked long before all this happened. I offered to cancel but my Mum wouldn't hear of it. I will contact the social worker on Tuesday when she is back at work and see what is to be done next. I will use the phrases that you've mentioned xx

 

[Shedrech]

hi Sadfordad
you are right about this

I suspect that even though he says he wants to come 'home' he won't recognise it as that when he does.

sadly for many with dementia what they really mean when they say 'I want to go home' is not that they want to go back to the last house they lived in but that they want to somewhere they feel safe, without the anxiety and confusion that dementia often brings, in other words they want to be without the dementia - often they may describe their childhood home, with their parents, and some say they want mum or dad, as an alternative to 'want to go home' - people do say this even when actually in their own home, and can go wandering to find the home in their heads
if anyone is taking this statement seriously, have them ask follow up questions to get at what your dad is unable to grasp (which may feel a bit cruel) eg where is home, what is it like, who is there, what do you do at home ... answers will show that he has no real comprehension of his current situation
I do appreciate that you want your dad settled in a safe environment with support you have confidence in - until that is available, your mum is safe in her own home and your dad is supervised and has most of his basic needs met - it may work to your advantage that you will be away and so unable to facilitate a return home - maybe your mum has plans to visit a relative so will not be at home either
as for financing your dad's care - I'm not sure that the LA have the right to take most of his private pension, I was under the impression that half is usually taken, however, if this leaves the spouse in financial difficulty the LA have some discretion to not take so much - maybe work out what your mum's average monthly outlay will be so you can show that she will be left in a precarious financial position
stay strong - and keep posting here
very best wishes
PS the AS helpline are also very helpful and knowledgeable; definitely worth a call - not sure if they are available over Easter

0300 222 1122 or by email at helpline@alzheimers.org.uk.
•Helpline opening hours:
•Monday to Wednesday 9am – 8pm
•Thursday and Friday 9am – 5pm
•Saturday and Sunday 10am – 4pm

 

[Sadfordad]

So my Dad came home on Tuesday and as predicted my Mum cannot cope. My Dad says she is trying to kill him and he wants to call the police. He has also accused her of stealing all his money and that everything she tells him is a lie. I am still abroad and being told all this by text...what do I do? I've told my Mum that she needs to tell all of this to the social worker. I think she is waiting for them to suggest that he move to a nursing home rather than her asking for it and that way she is absolved of the decision. But I'm pretty sure that won't happen. So I guess it has to be up to me

 

[LadyA]

If your mum feels in ANY WAY unsafe, she should call the police. I know it's the very last thing she would want to do, but they will be well used to dealing with such cases, and more importantly, the police can notify social services when they are called to a vulnerable person with dementia. It adds to the pressure on them to find a place where your dad will get the care he needs.

 

[Georgina63]

Hi sadfordad
So sorry to read about your situation. I think as you say it may well be up to you to intervene and make the decision on behalf of your Mum in the best interests of them both. It's all so distressing but it sounds like both your Mum and Dad are at risk (vulnerable adults) in the current situation. Both of my folks are in a CH now (both with AD) and at one point Mum was the subject of a POVA (protection of a vulnerable adult) as there was concern that she was at risk from Dad (police were called). I'm not sure what the answer is, but I did find my local Alzheimer's Society very helpful, as were the Social Services team (social worker and occupational therapist). I do hope you can find a good solution. I can only imagine how hard this must be from a distance. Georgina X

 

[Sadfordad]

Thank you so much for the support, I can't tell you what it means to me. I will speak to the Alzheimers Society on Friday. I'm just so worried. My Mum says there is no point in pushing for a nursing home as he won't go. But how do I physically make him go? I should never have come away I knew they would need me there.

 

[Georgina63]

Thank you so much for the support, I can't tell you what it means to me. I will speak to the Alzheimers Society on Friday. I'm just so worried. My Mum says there is no point in pushing for a nursing home as he won't go. But how do I physically make him go? I should never have come away I knew they would need me there.

Hi sadfordad, though it's so hard, try to keep in mind your Dad is not able to make decisions for himself and the best you can do is to help in that decision making. Consider what would be the best for him and get the help needed to achieve that. Each circumstance is different - in Mum and Dad's case we were able to persuade Dad that Mum needed to be somewhere she could be properly looked after, and Dad needed to be with her. There are many threads on TP that talk about the move into a care/nursing home that may be helpful. It's all a bit overwhelming at this stage. Take care. Gx

 

[HillyBilly]

Hi Sadfordad - don't berate yourself. If we all let dementia rule our lives none of us would ever do anything or go anywhere. For now just be on the end of the phone for your Mum, tell her that she must call the police or SS if something happens that she really can't cope with or makes her feel unsafe.
In fact, if your Dad is wanting to call the police himself, it might not be a bad thing if he does. The police will have to flag things up to SS themselves.
Do what you can from a distance. Don't let your Mum be railroaded into having to cope. But it does sound as if you're going to have to be the strong one/the "bad guy" in this for everyone's sake x

 

[Sadfordad]

Thought I would give you a quick update. My Mum was granted 72 hour emergency care help, so since Thursday she has had an overnight carer plus 2 hours in the afternoon. What a pity that can't continue. I can't believe its not cheaper to do that than provide full time care in a residential facility. Anyway, they were hoping to have a full time place for him before the weekend. Sadly 5 residential homes have turned him down saying they don't have the staff to deal with his needs (I did wonder if he'd been blacklisted after my long written complaint about the home where he had his respite care) This has worked in our favour has it has meant they have now confirmed 'nursing care banding' which is what I wanted for him in the first place. Hopefully we'll get somewhere confirmed on Monday. I know this means that my mum will have to cope on her own for maybe a night or two, but I really think its important to get him in the right place if its for the long haul. Anyway, just wanted to say thanks again for the advice, I'm feeling a bit more hopeful today xx

 

[Georgina63]

Thought I would give you a quick update. My Mum was granted 72 hour emergency care help, so since Thursday she has had an overnight carer plus 2 hours in the afternoon. What a pity that can't continue. I can't believe its not cheaper to do that than provide full time care in a residential facility. Anyway, they were hoping to have a full time place for him before the weekend. Sadly 5 residential homes have turned him down saying they don't have the staff to deal with his needs (I did wonder if he'd been blacklisted after my long written complaint about the home where he had his respite care) This has worked in our favour has it has meant they have now confirmed 'nursing care banding' which is what I wanted for him in the first place. Hopefully we'll get somewhere confirmed on Monday. I know this means that my mum will have to cope on her own for maybe a night or two, but I really think its important to get him in the right place if its for the long haul. Anyway, just wanted to say thanks again for the advice, I'm feeling a bit more hopeful today xx

That's good. Glad there has been some positive action. Hope it all works out. Gx

 

[HillyBilly]

You must be very relieved, both for your Dad's sake and your Mum's.