Inappropriate care choices for dad?

[dinodino27]

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!!

Thanks those that mention CHC - I know he wont qualify for that - I am not even thinking down that road. He is physically fit as a fiddle.

If he's scoring 19/30 on a Mini Mental State Examination (which is what I suspect this is) then he is deteriorating quite rapidly and you do really need to consider permanent residential care. I'm sorry, but that's how it is. Once he gets worse than this, finding him somewhere will be much harder.

I agree that shared facilities are a massive issue, but at the very least start getting him on the waiting list for places where he would fit in.

You are where my dad was about 8 months ago - he is now in full EMI (equivalent, he's in Holland) nursing care. He would probably score below 10 on an MMSE.

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

Hmm does anyone else think that remarks like this are down to them trying to save money and/or their own agenda. Its manipulative. I once had similar from a hospital staff nurse.

Carers are considered scroungers until its something the powers that be want and then suddenly the sun shines out of our arses.

If he needs ft nursing care, surely this should be NHS funded? Slightly different scenario-my mum died of cancer, for the last few weeks of her life she was in a BUPA care home, initially she was funding herself but we appealed and the PCT (as was-now CCG) agreed that as she required nursing cre it would come from NHS funds.

Also my gran had dementia and was in a private nursing home. IIRC this too was funded via the NHS as it was classed as nursing care.

Talk to the care home about funding. often care homes will defer the fees for a set period and allow you to pay the arrears when the house is sold. It's called a property disregard. They are used to this situation.

Well all the anxiety and worry about the trial/respite bed has been a waste of time.

Despite me telling the home from the beginning that my dad woke several times a night and them offering me a bed - after a meeting decided today to go through I thought the minor details they have decided that they cannot meet his needs at night. They were at pains to point out that that is just in the household with a current vacancy but the situation could change in the future. I NEED HELP NOW.

I feel so upset - I did not want him to go into care but then having 'psyched' myself up I feel so upset. Cried as soon as I got out of the meeting and all the way home. Where do I go from here ???

Dh called the man I had the meeting with as he was furious with me I felt (but he assures me it is with the situation)

He was demanding to know if it really was just he was not a good 'fit' for the current vacancy or was it they could not cope with disturbed nights generally. I was in bits and said I felt 'nobbed' off. Dh who has loads of experience chairing multi agency meetings and high level stuff so was basically annoyed with me I did not know the exact issue.

He decided to call the man himself - but then he could not get to the bottom of the issue . He said the the man was abrupt almost to the point of rudeness. A

So my biddable and pleasant dad with night time waking issues but no aggression or care issues other than the need for prompting. 1and willing to payout £37000 plus a year to them - it would seem has been completely fucked off without even a couple nights chance or explanation.

i am hoping some of the people that responded yesterday with experience in the area would have some thoughts.

Back2Two Carers assessments should assess your role and see what services need to be put in place to help you continue in your role. IME, these are not always well understood by professionals.

Some examples from carers assessments from the last few weeks alone;

1.) 6 hours of a sitting service to relieve carer of duties.
2.) Direct payment for carer to have a weekend away in a B&B by the sea.
3.) Gym membership for a carer who was getting back strain from physical duties.
4.) Direct payment for carer to attend a skills based course on living with dementia.

The Care Act that comes into force in April places considerable emphasis on supporting carers. The wheels should already be in motion.

dino It's late and I'm tired, so forgive me....has this home formally assessed your father?

Also, I'm really baffled as to your SW suggesting he'd only be entitled to 7 hours per week yet he'd also meet the criteria for residential care?! Surely, they have to evidence to higher management that they've exhausted every option in the community.

Crumble - i know the extremes are massive - I dont get it either. SW came out again today and he is sure dad needs 24/7 care. He came to my house, dad was not there. He has met my dad for 15 mins once a in september - but he knows alot about him!

The for the home was done with me today - dad was not there. But they had met dad when i took him to look around a few weeks ago. Dad was perfect on the visit - gave no indication of dementia - he can be very plausible.

Dino,
What a horribly stressful and worrying situation for you. It is truly bizarre that SS refused to provide any night time support for your father and only offered support for 7 hours a week, whilst they clearly acknowledged his need for a much greater level of support when they suggested that he needs 24/7 care in a care home - talk about one extreme to the other!

From what you've posted it's clear your father is in a pattern of 'sundowning' and that alone makes it unsafe for him to be without care during the night. I was in a similar position with my father just over a year ago, when Dad started roaming around at night and sleeping during the day, which meant he was missing out on the carer's visits/drinks/meals etc and was on a slippery slope downhill. His dementia test score was around 22/30 so similar to your father, but he also had very poor mobility and some other health problems. After a nasty fall on the stairs he ended up in hospital and while he was there I looked around at care homes and was lucky to find one that was ideal. I persuaded Dad to move there for a trial period, which then became permanent.

One of the things that made the transition easier was the fact that I got him one of the best rooms which had an en suite toilet and a door going out into the (secure) garden. The room cost a bit more but as he had enough savings to cover it for a year or so I didn't think further ahead than that. Social services started to get involved but quickly withdrew once they found he had savings and would be 'self funding'. However, when I suggested to the SW that I would apply for funding once Dad's savings dropped below the threshold (£23K), he very quickly replied that I may not get funding, as they might decide he could return home with 4 calls a day to support him! (Apparently, it is common for them to offer just 4 x 15 minute calls a day to elderly people.)

Time rolled on and Dad settled well into the home, but he still misses his freedom a bit and occasionally tries to 'escape'. He enjoyed the garden views in summer but the downside was that the carers kept pinning the door open in warm weather to air the room - Dad hated that as he sees all fresh air as a draught! Eventually his savings dropped and I applied for funding. Around that time a cheaper room became available, not facing the garden, so we moved Dad there as Mum could not afford to pay the top up that would be required for a view that he no longer cared about. The LA/council tried various tactics to limit their funding to their usual cap, including trying to get us to move Dad to a room with no en suite WC, suggesting he could use a commode instead. However, I knew my father would find that intolerable, so I stuck to my guns and achieved the full amount needed.

The council had a favourite mantra they liked to quote: 'Our cap is £x and any costs above that are the responsibility of the family to pay.' However, I had read up everything I could about funding, and argued every point with them, because my mother's pension is so low there is now way she could afford top up fees.

So, in your position I would definitely go with your gut instinct and try to find a place which you can picture your father settling into, and if that means a nice view and an en suite WC then go for it, because the extra money could be money well spent if he settles there and enjoys a couple of good years there. Sadly, once things progress to the severe stage, your father may need to go into a nursing home anyway, but with dementia you just can't plan very far ahead so there's no point in dwelling on that.

The SW had no business making the remark about the room being too expensive if it will be funded from your father's assets, but it's true that some people live 10 or 15 years with dementia, so they were just looking ahead to the possible costs to them once assets drop below £23K and he becomes eligible for LA funding. At that point they might try to move him somewhere cheaper, as their funds are very stretched and they have a duty to spend public money wisely. However, your duty is to get the best care you can for your father, so be aware that you may need to go into battle on funding if/when the time comes.

Meanwhile, I think your best bet is to ask SS for (another?) full assessment of your father's needs and ask them to provide a list of suitable homes which meet those needs, for you to view. Tell them the matter is urgent and that you can't continue to take the financial burden of his night time care package. Also, I'd suggest you explain that you need urgent respite care as the care duties are affecting your health. I have found carersuk.org a very useful website - take a look at the forum where you will find lots of good advice.

PS: In posting my above novel I forgot to say that the care home has carers who check every resident regularly throughout the night. Also, by enforcing a bed time routine and getting Dad up earlier in the morning, he is no longer sundowning/nocturnal.

Back2Two Sending a carers assessment in the post has nowt to do with funding and everything to do with poor practice. It makes me cross. There is access to funding anyway, it's just not fed down to workers on the ground from management.

So sorry dino. This is a massively stressful thing to have to negotiate.

I know you said that all meds options have been looked at but wondered about this: is he on aricept or a similar drug? Does he take it at night? These meds can be very stimulating and cause nightmares and although it says on the packet to take at night it is actually better in the mornings.

If he had more daytime care could they take him out in the mornings as exercise and sunlight can reset the body clock? Does he nap in the afternoon?

That said some people with dementia do just wake at night.

In my experience once a care home says no it is not worthwhile to argue with them. They hold all the cards. They have weighed up whether they can fill that bed with someone who will pay as much and is 'less trouble' and realised that they can and I doubt anything you can say will change their minds.

I'm afraid it is back to the drawing board and you will need to consider some other options. Could you re-consider things like the ensuite bathroom? I have a friend who runs a care home and he says that they have all ensuite bathrooms because families like it but in fact it is mainly for show as residents are not able to use them independently and get taken to the larger communal bathrooms to wash and dress where they can be helped more easily.

It is a compromise and I'm afraid it is a sellers market. The best care homes can pick and choose who they accept and so they get the easier to care for people and the private payers and the place seems nicer and calmer when someone visits and has better facilities and so they preserve their reputation and can pick and choose. It's like schools.

I'm sure you will find the right place but you might need to compromise on some things eg distance or facilities.

In a way it is better to find out now than to place him there, spend a lot of money and then get served notice when they realise they can't cope and have to move him again. Some places are quite ruthless in giving notice to residents who cause a problem and this tends to be the 'nicer' places as they are motivated to preserve the nice atmosphere and can re-fill the bed.