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Inappropriate care choices for dad?

(44 Posts)
dinodino27 Wed 12-Nov-14 20:12:16

I posted this on the dementia forum but I dont think it get many views so I thought I would try on here.

My dad has Alzheimer. He has been diagnosed for 3 years and I guess at the moderate stage. He is mostly ok in the dad - he has 2 carers come in each day - one for lunch and one at dinner time. He does ok in the day with my help and the carers.

BUT at night he is a nightmare - he just dose not sleep. He is up between 7 and 20 times a night. We have tried various drugs all to no effect. When he gets up he is determined to leave the house.

Initially when we became aware of the nighttime wandering in July/August (via the police picking him up in the middle of the night) I stayed at his house. We asked Social services for help but they refused night time care. I at the point of a breakdown due to lack of sleep decided we had to employer a carer. SS just said he needs 27/7 care.

My husband and I are paying for this ourselves. The carer does 5 nights (with me the other 2) and it costs £325 a week - our saving are dwindling fast.

I have looked at care homes but just dont feel he is ready them as he is so good in the day. I have put his name down for 2 homes. The only 2 that met my basic criteria of access to a reasonable amount of outdoor space and ensuite.

Anyway a bed has come up in the more expensive of the 2 homes. The home has said my dad can go for respite/trial. My husband is really keen on my dad trying it as he says we are just 'firefighting' at the moment and soon we will be at crisis point again.

BUT social services say the £760 a week this home costs is too expensive, if my dad was to stay permanently (I cant really see the point of respite unless it is likely to be home he would ultimately go to - I dont want to confuse dad further) . I reckon if I sold his house he has enough money for 3 years. The social worker was horrified "But he is only 77, he could live until he is 90, you cant possibly even consider X. it is inappropriate"

That has left me overwhelmed - what do I do keep him at home - costing me £1200 a month put him in carehome and his money will run out in 3 years. Alternatively I wait an see if the other care home bed comes up - but he is not the first on the list and it could be months and months - waiting for some one to die. Or as the SW wants me to I re look at the homes I have vetoed already or I look geographically further afield. My dad has too much awareness in the day to put him the EMI typle places, he needs residential.

Feel stuck between a rock and a hard place. And skint!!

HappyAgainOneDay Wed 12-Nov-14 20:32:48

I hope someone comes up with information. Sorry that I can't help.

petalunicorn Wed 12-Nov-14 20:33:17

It's hard to know, you don't have a crystal ball. I would be tempted to put him in the decent place now, while he can still enjoy outside space and use an ensuite and deal with three years time when it comes around. YOur priorities for his care by then might be quite different.

feckitt Wed 12-Nov-14 20:37:23

When you say you posted on the dementia forum was that a Mumsnet forum? The one I find very helpful is Talking Point which is an Alzheimers Forum. It's very, very difficult and I feel for you. Good luck.

vdbfamily Wed 12-Nov-14 20:48:44

Out of interest,do the home where you want him to go know his diagnosis and know that he is unsettled at night? A non EMI registered home would be unlikely to expect to have to be dealing with night-time wandering and would also be less secure,ie doors can be opened by residents from inside whereas EMI would be locked at night. It is a dreadful dilemma and the difficulty with Alzheimers is the situation can change as well so the night-time wanderings might settle down. Has he had a Telecare assessment as there is lots of assistive technology around now to keep people safer at home. There are devices that will let carers know when the front door is opened.The door opening can activate prerecorded messages saying,'please go back to bed dad,it is the middle of the night and you need to sleep' or anything else you think might help. Have you tried leaving messages in strategic places, so a carer settles him at say 9pm and puts a big notice on the door saying DO NOT OPEN IT IS NIGHTTIME. Is he any less of a wanderer now the evenings are darker and colder?
Is he getting Attendance allowance or PIP and the full night/day rate?
Are SS funding his daytime care?
Are you able to release some equity from his house so that he is funding his own care but getting to still stay at home?
Sounds like such a tricky situation. I think If it were me I would try and hang in there a few more weeks and monitor whether he still tries to leave the house.See if Telecare can offer anything useful,and hope the nighttime confusion settles a little with the darker nights. If he is not so confused at night he might manage without the nightsits every night.If it does not settle,the current situation is not tenable long term, and you will need to find him somewhere you like and if he has to move at a later stage,cross that bridge when you get there. Even if the place you like accepted him now,they might insist he move anyway if he became too confused so I don't think you can plan too far ahead. He is very lucky to have family doing so much for him so well done for that.You must be exhausted.

avocadotoast Wed 12-Nov-14 20:48:58

Do social services not pay towards some of the costs? So there'd just be the difference to cover? I'm no expert but I know they covered some costs for the home my grandma is in.

It is a really shitty situation to be in and I hope someone knows more about this to give you some proper advice flowers

Oinkypig Wed 12-Nov-14 20:59:16

I would not put your dad in a home you are not happy with. I would go with the home you like, the Alzheimer's will get worse, in three years time your dad could be very unwell and the home and outside space much less important.

It is best to not move older people but your dad may not even realise, and if the social worker is using that to pressure you now, record it and in three years time you could potentially use this as evidence as to why they shouldn't move your dad to a cheaper home. I have two relatives with advanced Alzheimer's, it's horrible. flowers

Theas18 Wed 12-Nov-14 21:00:11

I'd wave 2 fingers to social services. Get him into the expensive home ( if they'll have him knowing his night needs) whilst he has the capacity to enjoy it. Take the strain from your shoulders.

How fast has he deteriorated? I apologise if I'm being blunt but 3yrs down the line I think he'll be a lot more confused and needing much more intensive care .

At that stage he might well not really much care how nice his surroundings are and much more supported environment is likely to be needed. Funding wise if he's medically very much needing care then he might well get continuing health care funding anyway at a facility that suits his needs.

Purplepixiedust Wed 12-Nov-14 21:03:18

You probably need to look at more care homes and broaden your search area. Some are really good at providing activities and have garden areas, entertainment etc. It is a hard decision but you really can't go on as you are.

Does your Dad claim attendance allowance by the way? When working out how long you could pay fees for, remember he will still get his pension and AA each week to put towards the fees.

Some homes have a mixture of LA and private residents. I looked at one home for mum which was expensive privately but if you had paid privately for 3 years and ran out of funds they would accept local authority rate after that. It certainly can't hurt to ask.

I found 'talking point' on alzheimers.org a huge support btw.

Good luck.

mamadoc Wed 12-Nov-14 21:03:47

If he is privately funding his care (which clearly he will be if he owns a property) then tbh it isn't any of the social workers business is it?

Do you have LPA for him and is it health and welfare or just finances. If you have health and welfare LPA and he is self funding then it is clear that it is your decision and you should do what you think is right.

What she may be afraid of is that social services will have to pick up the tab if he does run out of funds and they may not be willing to do so. However 3 years funding is absolutely fine. Most places ask a minimum of 2 years funding from private payers and accept that they may have to reduce to local authority rates when funds run out thereafter.

This is a bit blunt but dementia does shorten your life expectancy so his living to 90 is not terribly likely.

An ordinary residential care home that is not dementia registered is unlikely to accept someone with a dementia diagnosis who wanders at night however. You could ask for a 'dual registered' place so that he can sleep in the dementia wing but go to daytime activities in ordinary residential. This may be possible.

Please be careful what criteria you are judging on and do go and visit some of the places the social worker is suggesting. The quality of the care and attitude of staff is the most important thing much, much more than facilities or nice carpets or anything else.

Purplepixiedust Wed 12-Nov-14 21:12:16

Just to add, I chose to go further away to get the right home for mum. She didn't know where she was anyway and it was worth a bit of extra driving for the peace of mind it gave me knowing she was well looked after.

crumblebumblebee Wed 12-Nov-14 21:13:07

Theas Continuing Healthcare is notoriously difficult to get, so I wouldn't be counting my chickens. Unless there are significant health needs that the OP hasn't described, he's not going to obtain funding.

dino Such a tough situation and, being a social worker for older people, one, I deal with every day. I also have personal experience and we made the difficult decision to admit my loved to a care home. It's hard to give advice as it's very individual. I would like to ask a few questions though; have you had a carers assessment and if not, please ask for one. Does the SW think he is eligible for 24 hr residential care? Have SS offered any other suggestions to manage night time needs e.g. door sensors to alert you when he needs the property? Are there any other options e.g. warden assisted living?

Be kind to yourself.

dinodino27 Wed 12-Nov-14 21:23:34

Hi

Thanks everyone.
He gets AA, we have tried all the telecare options with no luck.

No SS dont pay anything towards the day time care. They only assess him as needing 7 hours of care a week which is would not qualifier him for financial assistance as he has some private pension
The chosen home is brand new and the section I want dad in is residential EMI as opposed to just EMI (really dont fully understand it all) so from what I can make out (from just observing, with no medical experience) the residents seem to be at a similar stage as my dad. It is a household set up with 12 residents in section.

I have informed them about my dad at night and made it clear how unsettled he is. TBH I am not sure they will cope with it - but one can only try.

I cant really cast my search area any further as I have 2 many other commitments (other relatives to care for and young children and work) so I would not be able to visit regularly)

I realise the points made about it being the quality of the care not the nice carpets BUT my dad is too aware (in the day) to accept staying in anywhere too 'hospital' like.

Purplepixiedust Wed 12-Nov-14 21:25:40

Mums home was mixed - residential, nursing and respite all together. They also has people who came for the day. It was registered for dementia and was secure and could handle anything. There were three wings with primarily 3 levels of care but all offered all types. The mainly residential wing had a bar and pub night once a week with entertainment and residents from the other wings who wanted to go were taken to join in. Families were made welcome too.

Working out which homes are emi or dementia registered and which are nursing or residential is a bit of a minefield. I visited at least a dozen and rang lots more covering a ten mile radius! For instance some offered only residential dementia but general nursing. I found most EMI only homes quite depressing but not all. Some nursing homes who said they take dementia, only take mild to moderate as it turned out.

I suggest you try to find a dual registered home if at all possible which has the security required (coded doors).

mamadoc Wed 12-Nov-14 21:32:48

If he is private funding then it is between you and the care home and there is no need for social worker to be involved.

If you like the place and feel it is suitable and they are willing to accept him then I would go ahead and do it.

fWiW care homes are
ordinary residential- many residents might actually have mild dementia but certainly no behaviour problems
Dementia residential- should be able to cope with some dementia related behaviours eg wandering
Ordinary nursing- where needs are mainly heavily physical eg person is immobile, incontinent, needs feeding etc
Dementia nursing- people with difficult behaviours related to dementia eg aggression, shouting

Dementia (used to be called EMI) residential sounds about right for your dad. Where nights are so disturbed care at home rarely works out.

Good luck.

Greenfizzywater Wed 12-Nov-14 21:34:24

How big/well looked after is your Dad's house? If you rented it out would it cover the fees?

dinodino27 Wed 12-Nov-14 21:35:49

Thanks crumble - All SS have offered in terms of managing the night times is telecare. We have bed sensor and door sensor - both advising him to go back to bed - just did not work.
The social worker wants him in 24 hour care. Tbh I was rather annoyed months ago when SW first come as I felt the SW was totally focused on 24 hour even though I was saying he is not ready for that. As mentioned the only offer other than the 24/7 care is 7 hours a week homecare. Which seems from one extreme to the other to me.
Assisted living has not been offered but I dont think it would work as unless the door is guarded/locked he will be out of it.

That said I have wondered many times if a change of environment might improve the sleeping - as maybe if he feels he is 'on holiday' he wont have the desire to go out the work. But that is just an idea of mine not based on much knowledge of dementia.

Back2Two Wed 12-Nov-14 21:41:46

crumble .... What does a carers assessment get you? I've never known it make any difference to anyone who has applied

dinodino27 Wed 12-Nov-14 21:41:57

Thanks for the idea about rent - but no - it would not raise enough cash.

I need to involve SS I think as if goes into a home rather than just respite there will be a time lag between him going into the home and it being sold - so how do I bridge the gap in funds other with LA support. I have not mentioned this issue to the home - as I am not sure how the respite will go - but will mention when I go to see them tomorrow.

dinodino27 Wed 12-Nov-14 21:43:04

I asked about a carers assessment but was told the only benefit is I would be offered a free gym pass - as if I have time to go the gym!

Purplepixiedust Wed 12-Nov-14 21:56:02

The place you have found sounds ideal. Check out their position regarding when the money runs out. Another thing some homes do is charge a top up which may be negotiable. They accept LA rate when the money drops and the family pays an extra £x per week (not as much as private rate).

3 years is quite a while and your Dad may have different needs by then and need a different setting anyway. I don't know which is best but if your options are limited in terms of area, go with what suits you both now and accept you may have to move him in the future.

Your dad should be getting higher rate AA as he needs help at night. You may find he settles better at night in a care home and they may be able to suggest strategys or medication to help. My mum didn't sleep at night for a spell but this did pass.

dinodino27 Wed 12-Nov-14 22:01:49

Theas18 - I am not exactly sure what he is at. He recently score 19 (he used to score over 20)on some sort of test no idea what it is out of but it the CPN said that moves him the the next stage and that meant he would be referred to a new CPN team. I think she said he was moderate stage but I was sleep deprived when talking to her I am not sure.

He has no idea of the year, day or time. But knows who everyone is and 'presents' quite well in the day and can hold and follow lucid conversations.

MissPenelopeLumawoo2 Wed 12-Nov-14 22:04:39

Theas- Continuing Healthcare is notoriously difficult to get, so I wouldn't be counting my chickens. Unless there are significant health needs that the OP hasn't described, he's not going to obtain funding.

I second that. By the time my Mum was assessed for it she was completely bed-ridden, unable to sit or eat unaided, could do nothing for herself, could no longer speak & mostly slept all day long. Apparently she still did not meet the criteria. It is hard to understand quite how much worse she would have had to have been to be awarded it. She died two weeks after being judged not of significant need. If it wasn't so bloody tragic it would be funny.

FWIT I think you should tell the SW to get stuffed and put your Dad into the home you feel comfortable with. If he is self-funding then they can just butt right out of it. Sending you flowers Dementia is a totally evil bastard.

Purplepixiedust Wed 12-Nov-14 22:09:31

SS will sometimes contract with the carehome for the fees initially with the agreeement that they will be reimbursed when the house is sold. This is known as a deferred payment agreement. There is an inital period too where the property is disregarded (12 weeks) to allow for a sale. Have a look on Ageuk website there are some useful fact sheets which explain more about this as I don't know all the ins and outs.

This could end up being a problem for you if the LA will only pay for LA rates and if they don't agree with your choice of care home. Does your SW have any suggestions for placements? From their perspective the more expensive the home, the quicker they will be needed to step in...

Purplepixiedust Wed 12-Nov-14 22:16:59

With CHC funding you need to have complex medical needs and not just care or even nursing needs. It is complicated, very. Again Ageuk have fact sheets on the assessment criteria which explain it well. Even if it is granted it can be taken away again when the needs are less complex (due to a person being less mobile or more accepting of treatment for example).

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