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Best things I can do right now....

(7 Posts)
radiohelen Mon 11-Jul-16 14:26:13

My mum has been caring for my dad until now. He has had a number of TIAs, he struggles to find his words, he can't see out of one eye and he gets confused easily. Now she has been taken into hospital and we have a suspected diagnosis of Myeloma so she's going to start on chemotherapy and radiotherapy in the next week or so. The doctors have told her it's incurable and she'll be in hospital for a long time. She went in to hospital because her kidneys were failing.
We have arranged for carers to go in and check on my dad morning and evening but the doctor has told mum she will need a carer to look after her. They own their own house so I suspect they are not going to qualify for much help. My problem is that I live 3 hours away and have a seven year-old. My brother lives an hour away and has two girls under 11. I'll be able to help in the summer holidays but after that I'm not sure what will happen. We already have EPA for them both. Where do I start? All advice gratefully received.

ZaZathecat Mon 11-Jul-16 15:42:22

Owning their house won't stop them qualifying for financial help with their care needs. You need to get an assessment from Social Services, and their income will be looked at and they may have to pay all, contribute or pay nothing depending on what they have coming in.
Also, if they do not already have it, they may both be entitled to Attendance Allowance which is not means tested. It's worth looking into that.

thesandwich Mon 11-Jul-16 15:47:39

Sorry to hear this. It is so hard from a distance. Would it be worth asking advice from the hospice local to them or Macmillan? they can help sort all kinds of help and support.
Good luck

whataboutbob Mon 11-Jul-16 21:35:46

Agree with Zaza hone ownership would not mean they don't qualify for help. Attendance allowance comes in 2 bands a lower and a higher one. To qualify for higher you usually need help in night time eg with toileting. But if you need help only during daytime with activities of daily living (getting up, getting dressed, getting around) you could qualify, whether that help is coming from a carer or a relative. Also, the person doing the caring can get carer's allowance, but you need to put in at least 35 hours a week .
A good start for help might be a Clinical Nurse Specialist (CNS) at your mum's hematology unit, they usually are clued up on benefits and take a more holistic view of the patient than a doctor usually does. You could ring and ask to speak to the CNS and express your concerns. Good luck.

whataboutbob Mon 11-Jul-16 21:36:44

Forgot to say neither AA nor carer's allowance are means tested.

CMOTDibbler Wed 13-Jul-16 09:47:55

I think you need to get an urgent assessment from social services for your dad, and ask if there is a chance of getting him into some form of respite care while your mum is having treatment so that he isn't at risk when she stays overnight etc.

There should be a social worker attached to the oncology centre who can help you negotiate the system, and help get the assessment prioritised. They may also be able to do a benefits review, and make sure both your parents get what they are entitled to.

Other sources of help can be Macmillan, or a local carers centre.

Marmitelover55 Sat 30-Jul-16 16:35:23

I really feel for you. My dad was my mum's Carer - she had Alzheimer's. Dad became increasingly frail and when he was admitted into hospital we had to sort something out urgently. I live 180 miles away and my DB 60 miles. Mum went into a nursing home for respite care. When dad was discharged from hospital, he went into the same nursing home to convalesce. They were self-funding and I found social services very unhelpful.

After a few weeks they both went home and engaged a Carer who visited regularly. Things came to a head again when my mother fell and broke her hip. The dementia meant she was unable to do the physio as she couldn't remember she had a broken hip. She was discharged back into the same nursing home, although dad desperately wanted her home. In a way it was s blessing in disguise as dad was then admitted again and very sadly passed away in hospital in April. Thankfully mum was already being looked after in the nursing home, so we didn't have to worry about what to do for her. She very sadly passed away 5 weeks later (I think I've a broken heart sad).

Anyway, sorry for the long ramble, but I really feel for you and hope you get the right help. The staff at both the nursing home and hospital were really great.

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