Married to Alzheimer’s: ‘You do not acquire instant sainthood when you become a full-time carer’

Steph Booth with her husband, Tony. Photograph: George Skipper

Steph Booth with her husband, Tony. Photograph: George Skipper

Tue, Jun 17, 2014, 01:00

For me, my garden is a calm, reflective place. Digging, planting, weeding, I find it easier to think things through. I have recently been pondering what I would say to people who find themselves caring for someone living with dementia. Things I wish I had known or had been told at the beginning. Of course, it’s a personal list, but I hope it will help at least some people going through the same experience.

Dementia is a difficult disease to diagnose. We can all be a bit dopey and forgetful. How many times have you got to the top of the stairs and forgotten why you are there? This is not dementia. Signs of confusion are the clearest indicators that perhaps something more serious is going on. Tony began to mix up fictional characters in the book he was reading with reality. That is when I decided his symptoms needed to be checked.

Do not allow yourself to be shunted out of the doctor’s office with their blithe assumption that you will be able to cope. That would not be the case with any other long-term disease. It should not happen with dementia. It does though, for too many of us.

Along with the emotional impact of Tony’s diagnosis, trying to find out where to go, who to ask and what information and support was available, was unbelievably wearing. Make sure you at least get a starting point before you leave the doctor’s surgery. The Alzheimher’s Society is an invaluable and ongoing source of help.

Other people’s reactions

The person with dementia can find it difficult to accept their illness, but the reactions of other people, particularly family members, might be surprising and unhelpful. Even when the evidence is clear, some refuse to accept the diagnosis. I have certainly found this to be true.

At first I tried to explain to them why their acceptance was important, in being able to respond appropriately. Now, though, I realise it would have been better for everyone if I had not allowed myself to become distressed by their lack of understanding and support. Not everyone reacts well in a crisis.

A critical lesson to learn as a carer is to focus on the positive, prioritise what is helpful and move on from what is not.

Don’t panic. Don’t assume it is all immediately downhill from the diagnosis. There may well be a good few years before things begin to get really difficult. Tony was diagnosed about eight years ago, but it is only in the past nine months or so that I am having to deal with the full-time, serious impact of him having a degenerative disease.

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