Penalised for caring

A punishing lifestyle

My husband Paddy is 78 and has had a series of strokes. I’m 66 and I’m his carer. Paddy’s totally dependent on me. The way I see things, in our situation we are penalised across the board.

Because my husband is housebound, I’m housebound too. I have an occupational pension which covers our needs but, in our situation, we spend nothing on luxuries. We don’t go out for a drink or a coffee; we don’t eat out; we don’t go on holiday. We are unable to go anywhere so we have no need for that everyday expenditure.

In a way the main cost we face is that we are detached from the community we live in. Friends who used to visit us, we saw less and less, and then they stopped coming round altogether. I think we are a bit of a reminder to them that, at some stage in their lives, they may be heading the same way as we are.

The mounting bills

The money we would have spent on small luxuries goes straight back into the house. Because my husband is incontinent, we have to wash and dry clothes and sheets every day. All that electricity puts extra on the bills all the time. In winter my husband feels the cold very deeply and that adds to the bills as well.

My husband has coeliac disease. We used to be able to get some of the products he needs on prescription but in our area they’ve done away with that because you can buy them in the shops. That’s all very well, but a small loaf of bread for someone who is gluten intolerant costs £3.

We can’t get to the library, rarely use the roads, and have no children so have never used kids’ facilities.  And because we have occupational pensions, we’re not eligible for any grants. The implication with council tax is that it covers everything but we don’t get anything for free: we make a £116 contribution a week for Paddy’s care.

Benefits and pensions

I used to get Carers’ Allowance. I think the biggest joke was that when I collected my State Pension they asked me if I was going to keep claiming Carers’ Allowance or did I want to stop that and claim my State Pension which was bigger. What a no brainer! I just think they treat us like idiots.

Something else I’ve noticed is that although I paid my stamp all my working life, my pension is £10 a week less than my husband’s. I was a nurse for 27 years and also a secretary, a shop worker and a district councillor. At one time women were hardly given any pension at all. When you got married you could opt to pay less money into your pension, though I never made that choice.

My main issue is that the County Council takes Attendance Allowance from you when carers come in. You’re losing money. If you can’t take six months’ worth of incontinence pads from them, you have to pay for them yourself and we don’t have the space to store that many. Our whole life would be filled up with them.

Feeling let down

I applied for respite care to give me a break last May and didn’t get it until September. While he was there, my husband fell out of bed three times because he was left on his own. They ignored all instructions and he ended up dehydrated and in hospital. I complained to the local authority and they have done nothing. They said the home acted appropriately. I’m in the process of complaining to the Local Government Ombudsman.

There’s talk of stopping spending on services for the elderly to spend the money on younger people but these are services that we have spent our lives paying for and we are being denied them.