Trying to fill 24 hour care at home

[Alasdair Hunter]

Hi there. My wife, Evie, is 61 and was diagnosed 5 years ago. Recently she went down hill dramatically and now needs 24 hour care because she doesnt sleep through the night and can't stand on her own. I am paying for private carers during the day 9 - 6pm as I am still working (the mortgage has another 8 years to go). They are 4 lovely ladies who live locally, love Evie dearly and work half a day at a time. But now we need night care (9pm-7pm)to keep an eye on her during the night to stop her falling out of bed and keep her comfotable as I haven't slept for two nights! I was wondering how other people cope in similar situations and how you arrange cover that allows you to work and care for your loved one at home? Unfortunately I have a job that demands variable hours so bridging the 6pm - 9pm gap can sometimes be difficult especially if I have to travel abroad. I'm about to get direct payments for some of the care time, but not all. We are waiting for Evie's case to be put before the social services panel to determine the level of care she requires or that they are prepared to provide. If anyone's got any good ideas or experience that might help I'd be very pleased to hear about them. Desperation sets in around 4am of a long night.

Sorry if this all sounds a bit business like - but when you get to this stage that's exactly what it's like and that's why I hate the disease even more.

 

[connie]

Hello Alasdair, welcome to TP.

Sorry that you needed to find us, but you have come to the right place. I am sure that someone will be along soon with some helpful information.

Getting carers can be so hard. There are some wonderful people out there, you just have to locate them. Payment for same is another matter. Do hope that SS come up with a satisfactory package for you.

Getting late evening/night cover is so hard, sometimes it is the final straw. Forgive the question, but have you thought about care homes at all?

Whilst we were never funded at that stage, I just could not get cover at home.

Please let us know how things work out for you.

 

[VIB35]

Hi Alasdair, my mother has early onset dementia, aged 64, diagnosed when she was 60-61. She, too, has deteriorated really quickly and having had a disasterous start with bad carers from Care UK Agency and Crossroads we finally found some very good ones. The 2 best ones we had came from Allied Healthcare - an agency who work throughout the UK and 24 hrs a day. We were also lucky in that, through word of mouth, we managed to get help from some general nurses from the local hospital for a few days here and there too. In fact, our GP recommended one of them. My father also received some financial help through the direct payment scheme so he could spend the money as he chose... he also managed to come to some agreement with the carers by paying them a flat fee for a night rather than an hourly rate - which is so expensive. We've had care for 12 hrs a day for the past 10 mths (nights weren't too bad due to my mother having alot of medication to make her sleep). Sadly, she went into a care home on wednesday for a trial/respite as it was just getting too much for my father. I hope this is helpful, it is the most distressing of illnesses and sadly, i've been told, the younger the patient, the quicker the deterioration. My mother can no longer do ANYTHING for herself.... All the best with finding care, good carers are like gold dust..... VIB35

 

[summer65]

24 hr care at home

i know this will sound awful, but your message reminded me how lucky i am that my husband has 24 hr care in the home, even though it is fraught with strains and stresses. our funding comes from soc services and the mental health team. we have applied for continuing care funding - got it once, and are now fighting to have it reinstated. have you tried this avenue?on friday night last, no carer turned up - but that was one night, and i am now ashamed how stressed i became having read yr blog. my husband has frontal lobe damage and is challenging to look after. i did for two years. for the last year we have had 24 hr care. he has tried to commit suicide 6 times. i guess the combination of physical and mental problems got us the 24hr care. anything you want to ask - feel free

 

[katherine]

Hi
my mum gets 24 hour care at home. Paid for by direct payments and the Independent Living Fund. We fought like mad for it all. We have four amazing carers who we were very lucky to find. We Got two via an agency we were using previously who heard of our situation. The other two we knew had been working for a family in a similar situation to our own where sadly the lady who was ill had died. We head hunted the carers in question and now they work for us. You could ask at your local alzheimers society branch and ask your CPN etc if they know of any good carers. Word of mouth usually works in the end. But like i said we have been very lucky.
I hope you manage to find the right people. It was a struggle for us for a long time but now things are good and settled
love kate x