Unfortunately, Day Care, like so many other things, can be a postcode lottery. Once John was assessed as being a "Day Opportunities Member", which meant he had moderate/severe Alzheimer's, the cost rocketed from £1.50 a day, to £9 per hour, plus lunch - but I was told his previously paid-for cups of coffee would be free! Woo blooming hoo!
The "Peer Group Club", only charged £9 for the whole 4 hours, including lunch, but only operated one day a week in our area. Fortunately, John had been awarded DLA, prior to 65, which included a Mobility component, due to his leg and back problems, so this helped, and I also was able to get a little help from SS, after his financial review, but this still cost me a fortune. But I needed his absence, so that I could get a few hours sleep, and occasionally meet a friend for coffee.
And if the carer receives SRP, then you can't get Carer's Allowance as well. For years I was annually sent a letter stating "we are pleased to tell you that your
Underlying Entitlement has increased from £0.00 to £0.00, and will be effective as from 1st April".
When bathing John became a battle, cos he would kick me, Crossroads said I could have 12 hours of help each 4 weeks, however I wanted it, so I had 3 x 1 hour visits a week. They had a Peoples' Lottery grant, so I only had to pay £22.50 every 4 weeks. But when I needed more help each morning, I was charged about £18 an hour, with a minimum of half an hour, and extra at weekends.
I found out from Martin Lewis' site about getting the Council Tax Reduction, and managed to get this backdated for about 6 years, but until I joined TP, I was paying £15 weekly for incontinence pants, as our area only supplied pads. Then I found out that some folk in other parts of the country received both.
After several l-o-n-g conversations with the Incontinence Service, I asked why people in Hull were able to get both, but not in Havering, as surely your waste matter was the same wherever you lived in the UK, and why was this called the
National Health Service, when it wasn't applying the same criteria to different parts of the country.
When they refused to supply pants, I calmly asked for the full address of the Human Rights Organisation, as I felt that John's rights were being violated, due to his Alzheimer's and his postcode. There was silence. So I said that if they didn't know the address, not to worry, I'd contact my local paper for details.
They said they'd phone me back, and sure enough the next day I was told that "thanks to special dispensation", John was "allowed" one packet of 10 pants a week. I thanked them but said this was only equivalent to one and a half "accidents" a day, whereas I'd been catering for at least 3.
I got 2 packets of the pants.
But everything was a struggle. I found out that if you were sent to a Care Home from hospital, your fees were paid, and you get to keep your State Pension in full. If you went for respite, and SS decided it was in everyone's best interests that you should stay there, the Council fee was charged, the Local Authority would pay the Home directly, and then you paid the LA your SRP, less about £25 pocket money, plus half your private pension. That's what we did.
My friend's husband, in Plymouth, was sent from hospital to a Home, and she was told he had 3 months to live. Nearly 3 years later he is still there, they haven't paid a penny, plus he gets to keep his £135 a week pension in full.
But if you choose for someone to stay in the Home, you could be charged several hundreds of £s a week as a top-up fee, in addition to the council costs, whatever your savings. Then I discovered there were several expenses that could be taken into account, if you knew your facts, and were prepared to do battle with the LA. I battled, because otherwise, I just couldn't have afforded it all.
It's a real labyrinth out there and you need the equivalent of a degree in Einstein-ism to cope. And all this whilst caring for your loved one, and breaking your heart during the process.
