Respite that could make all the difference

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The Independent Online
'It would,' says Irene Mackenzie when contemplating the thought of four hours a week off from caring for her husband, 'make a such a difference.'

Care for her husband is about all she has done for approaching fifteen years. Alexander is 63, a double amputee with diabetes and Reynaud's phenomenon. That means no legs, high blood pressure, angina, fingers that ulcerate and cannot grip, such poor circulation that the gas fire is turned on in summer evenings to keep him warm ('I sweat buckets,' Irene says - 'he's still cold') and hands that cannot grip metal.

Alexander can dress himself just, but not get to the toilet at night; can have a shower, but only with help; can feed himself, but only after meat has been cut up, as for a child. He spent 25 years in the RAF as an instrument fitter, and then worked for the NHS as an admissions officer before his second amputation in two years saw him dismissed.

The couple live on disability benefits in a hamlet outside Exeter. There has been precious little help from social services, with whom Irene admits, 'we did have an argument some years back'. A social worker equated her husband to her own nine-year-old son 'and then told me that she coped. I was very rude to her, and I showed her the door. I told her that if she had nothing better to do than insult a grown man she might as well get out.'

Whatever the rights and wrongs of that row, Irene, 61, who herself suffers from spondylosis (a spinal condition meaning she should not be lifting heavy weights,) says she now cares more or less 24-hours a day for her husband who has had a stroke, cannot cook or propel his own wheelchair and whose condition is slowly deteriorating.

'He can't go out without me and I can't go out without him. I have to take him with me because of the angina which is made worse by nervous tension if he's left alone. I have to take him wherever I go, even if I'm only going shopping.'

They have had two holidays in fifteen years. 'On one we ended up on the third floor of a hotel and the lift was so narrow and it was all such a squeeze and a trauma that we decided not to do it again'.

Irene, who worked part-time as a housekeeper in a nursing home, has always turned down the thought of her husband going into a home to be cared for - something the state would in their case pay for. 'He doesn't want to, and well, quite frankly, I have worked in one. I don't think I'd want to put anyone in a home - maybe a specific holiday home for a bit, but that's all.'

The idea of 4-hours off a week and the entitlement to a week or two of respite care once a year is alluring. 'We've been so long without help . . . a life-time really. It would relieve the tension. I must admit that over the years he is getting worse and I am afraid that tempers are getting shorter. It would give me a chance to do something for myself. I wouldn't say I would need it every week. Just the thought that it was there if you needed to get away would be wonderful.

'You do get to resent it, because you have missed out on so many things over the years. We had planned what we would do and everything has been squashed by this. You just know that someone out there is worse off than us, and that's what keeps you going'.

(Photograph omitted)