Living with dementia magazine May 2010

Victoria Jones writes about how she copes with life as a carer

Caring for Nick is exhausting. I am always tired and frequently low. I promise to do things and don't manage them. I used to be professional, organised and efficient, and now I forget everything.

I 'came out' as a carer in 2007, three years after Nick's diagnosis and six months after I had become too ill with stress to continue working. I accepted that things weren't going to improve and that we needed help.

Admitting you need help when you've been an independent couple who face the challenges of life together is devastating. I was admitting that I no longer had a partner in any real sense and I was taking responsibility for both of us. 

Accepting help

In desperation, I called Alzheimer's Society. Reluctantly, I attended a coffee morning. This was the turning point in learning to deal with what was happening.

For the first time I met others, also in their fifties, who understood what was happening to us because it was happening to them too. In one hour, I felt more strength and understanding than I had in the previous six years. It was a huge relief.

This led to the first source of support for Nick, a weekly afternoon from Alzheimer's Society. He was very reluctant to accept this. However, once he got used to one friend, he has happily accepted others.

I frequently meet carers who say their partners will not accept help.  It's often the first step that can be the most difficult, but for us, things became easier.

Devon County Council runs a Take-A-Break scheme, which allows carers three hours' support a week for just £2.50 an hour. During this time, a friend comes and takes Nick out for the afternoon.

I also called a local voluntary group and arranged for another befriender to visit each week to take Nick for a walk. For that couple of hours, someone else takes responsibility and I can try to relax.

It is difficult to arrange day care as Nick doesn't 'fit' into any existing groups, and needs one-to-one support. But that is the next step.

Supporting others

Carers carry a heavy burden. Plenty of people tell me how hard it must be, how wonderful I am, and how often they think of me, but very few say, 'Let me help you by taking over for a while.' Those friends are jewels.

I spend some time now supporting other carers, particularly those whose partners have recently been diagnosed with fronto-temporal degeneration. As I listen to their stories, I'm saddened as I know the journeys they face, but I'm equally amazed at their ingenuity and strength. Exchanging experiences with others who understand gives me strength too.

Recently, a carer said she doesn't know how to face the future, unwittingly revealing how well she deals with the present. She didn't realise that because no one had told her.

I find that a healthy sense of humour and of the absurd can also help. Something that may feel awful when it's happening at the time is actually humorous when you share it with the right people. On one occasion, Nick almost got shot walking straight through airport security with his hands in his pockets while the alarms sounded!

Adjusting

As carers, we spend increasing hours caring, so it's difficult to maintain our previous life or our own interests. I don't believe in 'me-time', a selfish advertising concept in my view. Life is about caring for each other, and my life is about caring for Nick and our family.

At the same time, I have had to adjust from life as a couple to developing independent interests. Two years ago I went abroad with a friend and was apart from Nick for a fortnight. Last year, for my sixtieth birthday, our children looked after Nick while I travelled alone to join a group in Peru.

These were wonderful experiences and huge steps of independence. Day to day, the time I have to myself is early morning, when Nick is sleeping heavily. This is when I swim nearby, reflect and organise my thoughts. In the evenings I can leave Nick for a couple of hours whilst I sing or attend book club.

Other than our family, Nick and I continue to share a love of our home and the landscape. We live in a beautiful place, Topsham in Devon, and on certain mornings there's nowhere else I'd like to be.

We have been very lucky in life to have each other and our three wonderful children, and as a family we continue to share great joy as well as sorrow. I am fortunate to meet so many people who face enormous difficulties with courage and generosity, and to receive so much kindness from those who spend time with us.