Diana Melly on looking after her husband

[chenrezig]

http://www.theguardian.com/lifeandstyle ... ung-cancer

Dementia is notoriously difficult to diagnose in its early stages. And with someone like my husband, who had always been eccentric and absent-minded, it was even harder.

Three years before he died, I just thought his behaviour was becoming somewhat delinquent. He was losing credit cards – 14 in one month – because he couldn’t remember his pin, which should have been easy as it related to his birthday. He would leave the front door open, lose his keys, and when travelling to London he would sometimes end up in Plymouth.

I didn’t take these episodes seriously. Then something happened that should have alerted me but still didn’t. He was singing at Ronnie Scott’s and when I called in at the club, admittedly unexpectedly, he didn’t recognise me. A few weeks later (this was January 2005), his lung cancer was confirmed and I think I was putting his increasing memory lapses – which weren’t just forgetting the names of his favourite film stars, Laurel and Hardy – down to his health, his whiskey and his medication. George had pills for his heart, high cholesterol, psoriasis, duodenal ulcers and a thyroid problem – and numerous inhalers for his lungs.

But in March that year I stopped him in the street outside our house and again he failed to recognise me. When I told him my name, he asked if I was a cousin. We laughed it off, but when I told a friend, she said it wasn’t funny and that she thought he had dementia. I went to my GP, who gave me the number of Admiral Nurses; she said they helped anyone worried about any aspect of dementia.

I rang them and got through to Madeline; she listened carefully and said it sounded like vascular dementia with Lewy bodies.

The next few years were often sad and depressing but as it was George there was a lot of humour; also love and anger. Hate, too, because sometimes when he was unfair, I hated him and then hated myself as well.

When his diagnosis was confirmed, I felt relief. Not knowing in any situation is hard, but knowledge is power. Madeline sent me information packs, advised me which books to buy and told me which financial benefits we were entitled to. I now Googled not only lung cancer but also vascular dementia, Alzheimer’s and Lewy body too. A diagnosis also meant that I wasn’t imagining things; there was something wrong and now I could plan.
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There were two conditions to consider – cancer and dementia. I planned for stair rails, a wheelchair, a commode. I imagined moving him from his bedroom, which was on the second floor – too many stairs – down to his sitting room. Eventually all these things came to pass. I hoped he would die of cancer before he reached the last stages of dementia when he might have to go into a home. There I think we were lucky because he did die.

At least I think we were. It’s probably selfish and sentimental, but because I miss him, I sometimes wish he was still in his sitting room, in his hospital bed or even in a home and I was on my way to visit. When you miss someone it’s not just the good bits and the happy times; you miss the whole person, the bad bits – and the sad bits.

I knew that it was important to George to keep working. Singing wasn’t a problem; right up to about four weeks before he died he could remember all the words to his songs. Writing was different. Asked to write 1,000 words on Salvador Dali, he wrote 10,000. It was a frightful muddle, scrawled over endless sheets of paper without numbers, and three months late. Luckily, he had a wonderful editor, who sorted it out.

After that, I tried to answer his phone so I could turn down any commission that I thought would be too difficult – but of course that had to be balanced with not assuming too much control.

I was always nervous when George was away singing. I was told that once or twice he’d wandered off to the pub and been unable to find his way back to the concert hall. But some of the battles we had when George’s dementia was in the early stage were because I tried to control him and he resisted. My faults and virtues are inextricably linked; I’m a good manager and organiser and therefore I’m bossy and, some would say, domineering.

In the end I did learn. It’s probably wrong to make comparisons between dementia sufferers and teenagers, but a useful strategy when in conflict with either is to walk away. I did it with my own teenagers and then I did it with George. And I learned to be kinder sometimes when he knew that something couldn’t possibly be as he imagined it. His eyes would look sad and scared, and then I could put my arms around him.

Later on, in his last few weeks, we could even make jokes. He would ask, “Is such and such true or is that my dementia?” He got to be rather proud of having it and it was almost the first thing he told people. “What’s that thing I’ve got that starts with D?” he would say. Then he would laugh because he could never remember what it was called. His way of describing his condition was “I have no sense of time, date or place”. One aspect that he enjoyed was possibly caused by Lewy bodies: three lovely pre-Raphaelite women used to wander through his room and into his bathroom.

It was in March a year before he died that his condition began to deteriorate, although some things remained quite intact – like his refusal to have any treatment for lung cancer, and his determination to get through three packets of cigarettes a day.

He also began to lose weight; his famous suits hung off him and he lived in his kaftan. I could chart his decline by the contents of our fridge and freezer and the food he liked: fish fingers replaced fish cakes, shepherd’s pie was replaced by one lightly scrambled egg. He could only manage three sips of his daily glass of lager and eventually he didn’t even want any whiskey.

In June, four weeks before he died, he was carried downstairs for a family lunch in the garden. He sat there with our son Tom, reading King Lear and choosing the bit he wanted read at his funeral. We couldn’t carry him back up so he slept in our granddaughter’s room next to his sitting room, where next day the hospital bed was installed. The commode, a box of controlled drugs and a syringe driver arrived, along with the district nurse, the palliative care nurse and a carer called Mary who was going to relieve me for two hours a day.

I found the task of caring for George that last month very satisfying and comforting. I like taking care of people and because our marriage had often been difficult, I felt I could make up for some of the bad times. I was lucky; I had wonderful support from the nurses, our GP, my friends and children and, of course, from Madeline, the Admiral nurse.

George’s dietary needs went from a spoonful of rice pudding to sucking water from a sponge. I think it was the absence of whiskey that made him less angry and confrontational. The main thing he insisted on was that people should not ask him how he was. I put a note on the door; “Don’t ask him,” it said, “he will reply, ‘I’m fucking dying’.”

And he wanted to. The last 10 days, when the Marie Curie nurse arrived at night and I went to bed, he said goodbye rather than goodnight. Four weeks after he had managed to sing three songs at a benefit for Admiral Nurses, he died. At home, not in pain and ready to go.

• Strictly Ballroom: Tales from the Dancefloor by Diana Melly is published by Short Books, £10.99.

[annie]

I presume this is the jazz pianist George Melly. I had no idea about his illness. It is brave of her & helpful for others to hear his story

[annie]

I presume this is the jazz pianist George Melly. I had no idea about his illness. It is brave of her & helpful for others to hear his story

[daisy]

I remember George Melly but did not know the story. I can relate to much of their experience as hubby has vascular dementia. It's good to know they had Admiral Nurse support as I have read that they give first class support for Dementia/Alzheimers patients and carers. Unfortunately there are no Admiral Nurses in Scotland!

Thanks you for posting this Liz. xx

[wendy]

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[JaneJ]

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[Rosalind]

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