Suddenly, permanently disabled. What help is actually available?

[MandyD]

Having been treated for breast cancer five years ago, and seeming by blood tests etc to be clear, my mother has recently been diagnosed with secondary cancer of the spine. Once the hospital actually got their act together and performed an MRI scan (she'd ONLY had symptoms for six months!) she had radiotherapy fairly rapidly.

But unfortunately due to the position of the damaged vertebrae she is now unable to walk or move unaided.

Occupational therapy have done a home assessment etc and physio feel that the spine damage makes it unlikely that she'll be able to use a wheelchair. She will have a hospital bed at home, a hoist, and a reclining chair for daytime.

It is suggested that she will have personal carers three times a day (getting up, lunch and getting to bed) but what my father is concerned about is how things are handled outside these times. He enjoys bowling twice a week, chairs several groups and societies in the evenings etc. These are the sort of things that keep him alive and active, IMO. I may be able to move and live nearby eventually, but not immediately. What options are available for care for mum 'out of hours' as it were? Any advice from anyone who's been in a similar position would be most welcome, thanks.

[Jimjams]

Not in the same situation but have a disabled child. Are social services involved? They will know what is available locally. It may be worth asking about 'direct payments" - these provide money which your father can then use to pay a carer directly. He would employ the person using the money form social services. Some areas are very keen on direct payments- others aren't but worth checking.

Also check whether your father is entitled to carers allowance. I receieve that for looking after my son- I assume it covers adults as well. One portion (40 odd pounds a week) isn't means tested, there is a top up which is- not sure how much the top up is, but I almost didn't apply as i thought it wasall means tested. A social worker should be able to explain all these.

Also DLA (disability living allowance- again not means tested) which includes mobility.

You need to either talk to a social worker- or some sort of disability advisor to make sure your are gtting everything they are entitled to. This may provide enough money for your father to pay a carer so he can attend his outings. These will be even more important for him now.

[suedonim]

My mother received quite a generous Carer's Allowance when my father was in his final illness, which helped relieve the burden a lot. Social Services also made modifications to the house. Dad went to a day care centre once a week, which was good for both of them, as dad needed to see other people and mum could get out. In their area there is a scheme called 'CrossRoads' and they provide a sitter to enable a carer to get out, too. I think it's a voluntary service but I'm not 100% sure. You should find it in your phone book under that name or possibly via SS or the Red Cross. HTH.

[robinw]

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[MandyD]

Thanks to everyone who's replied so far. And big (((hugs))) to RobinW for taking time to reply at this time. Both my parents are pensioners, I hadn't realised this would make a difference. I've emailed him with everyone's advice just now, so thanks again.