Valium Trifle. Supermarket Tantrums. and a Kitchen That's Always in a Mess. the Inside Secrets of Life as a Carer

Daily Mail (London), June 15, 2004 | Go to article overview

Valium Trifle. Supermarket Tantrums. and a Kitchen That's Always in a Mess. the Inside Secrets of Life as a Carer


Byline: VALERIE JOSLIN

GOOD HEALTH reader Valerie Joslin, 69, is married to Roy, 68, andlives in Cambridge. For the past 35 years, Roy has suffered fromParkinson's disease, which has caused dementia. While caring for herhusband, Valerie has also looked after four other family memberssuffering from various physical and mental disorders. Here, sheoffers her unique, touching and funny guide to being a carer. MY EARLIEST ambition was to become a nurse - one of those serene creatures in early TV hospital dramas, who glided around the wards dispensing comfort and cheer, admired, of course, by a host of young doctors.

At 18, I applied to the Westminster Hospital and was accepted. Suddenly, the reality of dressings and bedpans struck home. I realised I was far too squeamish to be a nurse, and instead taught seven to 11-year-olds until my marriage in 1963.

I returned to work with children with special needs. I was usually referred to as the 'backward teacher' - a label I didn't appreciate at the time, although this experience of child psychology was to prove useful later.

My husband was in his mid-30s when he was diagnosed with Parkinson's disease.

Minister of a Baptist church near the Elephant and Castle in London, he was able to continue until his early retirement in 1985.

Moving to Cambridgeshire to be near my elderly parents, we spent the next 13 years caring (consecutively) for a father with dementia, a mother with lung cancer, a mother-in-law with Alzheimer's and an adopted 'aunt', who, at 94, could no longer live alone.

All this time, Roy gave me moral support and shared the responsibilities.

Then, quite suddenly, he developed Parkinson-related dementia.

Although previous experience helps, it cannot prepare us for the emotional trauma of 'losing' a loved one to this sad condition. Nancy Reagan described it as 'the long goodbye' - and I know just what she meant.

Now, I remind Roy daily that I am his wife of 40 years, but most of the time he looks at me with lost eyes. His grandchildren come to see him, but I don't think he knows who they are.

I dress him, wash him, take him to the toilet and put him to bed. I won't leave him to the care of anyone else for more than an hour.

Dementia is sad - but it can also be quite funny. When I was caring for my mother-in-law with Alzheimer's, she used to regularly undress the bed and come into our room wearing the sheets. We would joke that Phantom of the Opera was in the house.

TRIPS to the supermarket could lead to chaos as she grabbed someone else's shopping trolley, then tried to run with it out of the store. Sometimes it's hard to see the humour at the time, but with hindsight it's good to laugh.

My doctor says I should get more help with my husband. I am 69 now and have the beginnings of the aches of old age.

But I don't feel there is anyone who can care for my husband properly. To put him in a residential home would be like putting a puppy in kennels.

So, for now, we will battle on, just the two of us. And while he sleeps I have time to put my thoughts on paper - in the hope that I can help all the other carers out there. We are not alone. You will need:

ADAPTABILITY: Sometimes we have to 'go with the flow' and abandon our beloved routine. You can be sure of one thing: days rarely go as planned.

Breakfast can be any time from 7am to midday, depending on whether the night has been peaceful or frantic.

I once had to abandon a supermarket trip when my mother-in-law threw an 'Alzheimer's tantrum' in aisle three. Now, with online shopping, we have essentials delivered to the door.

Even going to church became a bit of a minefield when Mum began to heckle the minister with an audible: 'Oh be quiet, do!' *

BREATHING SPACE: Monday afternoon is Scrabble afternoon for me. Two or three friends come over and it's my chance to switch off. …

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