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Don't know what to do- help please

(5 Posts)
dinodino27 Tue 11-Nov-14 21:10:19

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!!

AWholeLottaNosy Thu 25-Dec-14 23:16:51

Oh that's so hard. My dad has dementia and also lost his sight. I looked after him for a year but couldn't do it any more as it was so stressful and almost brought me to the edge of a nervous breakdown. It's a sad fact that if you can pay for care you will get a better service. I had carers in but my dad was getting up many times in the night, wandering round the house, not knowing what time of day it was, coming into my room and one time going outside when I hadn't double locked the front door. I don't really know what to advise, it sounds like a care home would be the best place for him, yes it will cost money but once his money runs out, the state will pay ( but it would be in a cheaper home) All I can advise is to speak to the Alzheimer's Society. I really do empathise with you, it's such a difficult and heart breaking situation to be in. flowers to you. Xx

AWholeLottaNosy Thu 25-Dec-14 23:18:40

Where my dad is costs £2,000 a month. £760 a week sounds excessive!

overthebliddyhill Thu 25-Dec-14 23:36:33

I second speaking to the Alzheimer's society. The were an amazing help when we were at this stage with my mother. Are you getting full attendance allowance?
We thought as you at the beginning but in fact the money from her house lasted a lot longer than we had thought....and it wasn't a huge sum.
Happy for you to pm me if you think our experience could help.

FidgetPie Thu 25-Dec-14 23:38:47

You have my sympathy. My father in law has dementia and is about to transfer to sheltered housing with 24 hour warden.

That is a lot of money, but in your shoes I probably would move him to your choice of care home for the trial and then maybe just for a year or so (after selling his house) and just see what happens. Maybe keep your name on the list for the cheaper one as well and keep an eye out for alternatives. It is so hard to predict the future so I wouldn't worry too much now about what if he gets to 90. Instead try and make the best decision here and now - including for your own health, sanity and finances.

It may be that in a few years he has deteriorated and so outside space is less of an issue / moving to somewhere cheaper once social services start paying is less of a concern. Alternatively / additionally you may be able to top up their contribution a bit (less than the amount you are already spending).

You can only try your best
Take care x

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