Living with Dementia August 2008

Many older people are sacrificing basic needs in order to foot the bill for care costs.

'An absolute nightmare' is how Shirley Honey describes her experience of caring for her late husband, Dennis, who had Alzheimer's disease. Although Shirley was insistent on caring for Dennis herself, despite her severe arthritis and having suffered a heart attack, she desperately needed support. The support she received was of variable quality, however, and often came at a price.

Dennis and Shirley met when they were 16. In all the 58 years they knew each other, Shirley says Dennis had never once been aggressive. But the dementia could cause him to be so.

Even so, Shirley says,

The biggest burden of all was thinking twice about everything I spent. When Dennis moved into the nursing home, they were preparing me for his death for two years. I never knew how long I would have left when I had to find this money for his care.

Paying for care started at home, where Shirley cared for Dennis between 1993 and 2003.

I couldn't cope when his aggression and mobility got worse. I suffer from severe arthritis and have had lots of operations on my hips and knees. So I arranged home care.

Someone would come and get him up in the morning and put him to bed at night. That cost around £60 a month. We needed a bath lift and I was told it would take social services three years to arrange this so I bought one. It was around £400. I also needed to buy a bath stool which was quite expensive but turned out to be useless, so that was a waste of money.

I tried having night care once and it was an utter nightmare. They came at 10pm until 6am. The first hour was used up talking to you about what's what. During the night two supervisors would come along so I'd hear the doorbell. They didn't take my advice on how to fit Dennis' incontinence pads so I'd hear them stripping beds in the middle of the night.

One of the carers decided to sit downstairs with a baby monitor instead of sitting with him so I'd hear the TV. I would hardly sleep and then they'd be off at 6am. So I gave that up.

(Shirley didn't have to pay for this).

Dennis' condition deteriorated and in 2003 he moved to a care home that provided nursing care. This is when the costs really started mounting up.

The amount they had to contribute to care home fees between January 2004 and September 2007 was £18,667.56, paid for out of Dennis' pension.

Shirley says,

Every year that the pension increases came through, the costs went up. But the costs didn't end at his nursing home fees. There were haircuts, chiropody, toiletries, a recliner chair. I bought a wheelchair so that I could take him out. And then we had to use taxis because it was the only way we could transport the wheelchair anywhere. As he lost weight I kept having to buy new clothes. You had to be really careful what you bought too because they really hammer clothes in tumble driers in homes.

When I applied for continuing care funding*, he was turned down. This was despite him having TIAs (transient ischaemic attacks), seizures, being immobile and unable to stand, needing the help of two carers to move him from his chair to the bed, and needing two hourly turns at night. He was assessed as only needing social and domestic care so didn't qualify.

Shirley is in the middle of appealing this decision.

She says,

All of these costs were necessary, but you work all your life and pay all your taxes and you find you're still paying and paying and paying for things.

To ensure she had enough money to pay for her council tax, gas and electricity, she cancelled all their subscriptions.

Among others, I cancelled our National Trust subscription which gave us a great amount of pleasure and our donations to the local hospice. I stopped sending greetings cards to friends and family. I used to get my hair done every week but stopped that. I really had the feeling I was being hard done by and that this wasn't fair.

Meanwhile, Dennis was left with £18 a week and 50 per cent of his industrial pension.

Sadly, Shirley had put some of her own money aside for a surprise trip to Canada for Dennis' 75th birthday and their Diamond wedding anniversary. She ended up spending that money on redecorating the house.

*Continuing care funding is often called fully funded NHS care. Anyone qualifying for this level of care should get all their medical fees and associated costs paid in full by the NHS. If they are in a nursing home this will include the accommodation costs.

Take a look at our factsheet, Assessments for NHS-funded nursing care (452)