Shine A light in the darkness

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In 2016, Brian Sugden’s wife Audrey was diagnosed with dementia. Brian tells the story of their marriage and how he coped. As Brian says, even in the most difficult times he was able to find “a light in the darkness.

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Audrey & I met in November 1960. I was eighteen, she was nineteen - though I thought she was much younger. She certainly looked it and I was a bit bothered about being accused of cradle-snatching. But with other blokes showing an interest (in her, not me!) I knew I had to make a move. We married on her 22nd birthday in 1963.
 
We had a marriage made in heaven. The usual ups- and-downs that all couples have from time to time, but a good marriage nonetheless, including two fine sons. I thank the Good Lord every day for the 56 years we had together. I love her now, a year after her death, as much as ever. I keep saying that I could search for a thousand years but wouldn't find a better wife.

All I can say in this
situation is: keep loving the person you're caring for.
It's still them. 
Cultivate patience

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Audrey was always the organiser; she was really good at it. Two stints as Churchwarden, leading several church groups & committees, and a good long spell as Church Council Secretary are evidence of that. She always controlled our finances. We didn't have much money in the early days, it all went on feeding us and paying the bills. It came as something of a surprise when, a few years ago, Audrey asked me to get involved with the finances. In case anything happened to her, she said. So, we shared the task. By now we were banking online so
I would run off a sheet with the monthly income & expenditure and Audrey would check it as I called out the figures on the computer screen. After a while, Audrey started to have problems with the figures. I would have to show her where on the sheet they should go. Later, I would have to show her how to form the figures. I put this down to the fact that we were getting older and this was just a part of the aging process. Perhaps, subconsciously, I was afraid to even consider the alternative.
 

Months later, she had a series of mini blackouts which led to me phoning for an ambulance, despite dire threats to my wellbeing if I did so. Then a trip to hospital and the dreaded diagnosis was made. From that point, I watched this lovely, intelligent, extremely capable woman deteriorate before my eyes. Initially she hid the problem very well, though some of our friends had their suspicions. Then I found an old diary which she had used to practice signing her name. She obviously knew that something was wrong.

 

It was weird having to take over. The finances; the housekeeping; the washing and ironing; the cooking, cleaning and shopping. Gradually Audrey did less and I did more. Fortunately (I'm not sure how) I made contact with Carers Leeds, Crossgates Good Neighbours (XGGN), HOPE, Tea Cosy Cafe and Garforth NET who, between them, saved my sanity. The various organisations pointed me in the direction of help and provided us with social opportunities that can be enjoyed by those living with dementia and their carers.

Shine A light in the darkness

That stress was lessened somewhat when Audrey moved into permanent residential care. Her decline was enormously quick. There were still stresses though: on some visits I would try to help Audrey with her meal. She wasn’t feeding herself by this time and needed help. To sit there, offering her a spoonful of soup and having her stubbornly refusing to open her mouth brought back all the frustrations of caring for her at home. I'm ashamed to say that, at times like that, it was difficult to remember how much I loved her. Times like that are truly heartbreaking. Audrey had also lost all sense of balance. I had intended to take her out - especially to the Garforth NET coffee morning on Thursdays. But I couldn’t do it any more. I lived in hope that she would recover some of her mobility, but I didn’t hold my breath.

Shine A light in the darkness

Brain and Audrey before Audrey became ill

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I have friends who told me of their wives beginning to live with dementia long before Audrey was diagnosed. They have not deteriorated half as quickly and, at the time of writing, they still have their wives at home. This disease is as unique as the person suffering. No two sufferers are alike.
 
All I can say in this situation is: keep loving the person you're caring for. It's still them. Cultivate patience - they can't help frustrating you. Seek out help, both practical and social. Some of your friends will vanish. Not everyone can cope with the change in your loved one.

Audrey and I met through church and have been involved for almost 60 years. However, when my prayers for her to be well and for her not to deteriorate proved fruitless, I railed at God and quit the church. Even then, something pulled me back. I don't know what but I'm glad I returned. I can't describe how differently I look at things now. I can still see the negatives but am able to concentrate on the positives (cue for a song?).

The feeling I'm fighting now is guilt. Audrey is now no longer with me. I, on the other hand, am free to come and go as I please. To indulge myself in the things I enjoy, while the person I love most in the world can’t. I know that it isn't my fault, I know that this situation is not of my making. But when I sit at home after being out enjoying myself or just getting on with a normal life, I cannot convince myself of that. The sheer unfairness of the life she had for those last few years compared with mine is is difficult to accept and often sours my lonely evenings at home. All my lunch clubs, involvements with the local groups, my re-involvement at church don't come anywhere near compensating for the loss of my Audrey.
 
The shining light in my darkness is that, because of the horror of Audrey's condition, I have met some truly wonderful people. The volunteers and staff at the organisations I've mentioned are truly amazing. They act as if you're doing them a favour by going. There really are some wonderful people in the world. With their help & that of my family & friends I will set out to enjoy the rest of my life. Audrey would not want me to do otherwise.

Shine A light in the darkness

Audrey’s condition deteriorated but Brian still cared for her

Caring for Audrey prompted Brian to write poems. Below he tells us about his writing and the book he has written to raise money to find a cure for dementia.
 
What got you started on writing?
 
It’s something I’ve done for a long while. It started when my son Peter came home from school with a report that said his creative writing was very good. For some reason I thought, “I can do that!” So, I bought an exercise book and started writing a story. I filled two books! I used to write bits of doggerel. If something interesting or funny happened, I’d write it down. I’m a great one for mangling mottos. I changed the saying “you can’t turn a dog out on a night like this” to “you can’t turn a knight out on a dog like this”. That one’s in the book. I went on a marketing course with the post office. I told someone about my writing, and I ended up writing an ode for each of the blokes on the course! Sometimes Cross Gates Good Neighbours ask me to write a piece for them. I wrote one in praise of the volunteers recently. I wrote a poem for the AGM last month – and sang a song too.
 
How did the book come about?
 
I wanted to kill the disease that killed my wife – to put it crudely. The only way I could think of doing it was to make some money for research. I used to do talks about Audrey and read poems and people seemed to like them. People would come up and say, that poem was lovely. So, I thought, if people like my poems and they’re prepared to pay for them, I can make some money. I dragged everything that I’d written and put it into a book. I even put in pieces I’d written back in the 1970s. There was one I wrote after a difficult day caring for Audrey. We’d gone to bed and I was reading a book on my iPad. I just looked at her lying beside me and thought, “Well, you’re here, love. But you’re not here.” The poem just came to me and I wrote it out. When Audrey went into Springfield (residential care) I told them about the poem and they asked for a copy. And another one too. I do entertainment with a friend of mine, John. And he asked me if I had any Valentine’s poems we could sing. I said no, but I’d no sooner put the phone down and the wheels started turning in my brain and I wrote a Valentine for Audrey. The people at Springfield framed them and put them in Audrey’s room.

How do you get inspiration?

It’s just a question of what strikes me. For example, I moved into a new place in October. One of the ladies I know mentioned a couple I sit with at the lunch club. I’d written a piece for their golden wedding which they printed out and framed. This lady said, “You should write one for Annie, she’s 101 years-old.” I got some information about Annie and I wrote her a poem for her birthday. It just depends what comes up. I’ve got a 20,000-word story I’m working on. I had this idea: what if I were to go down one of those alleys off Briggate and end up in a parallel world...! I’ve hit a bit of a block with that one. I enjoy writing though. It’s a bit like reading. I’m discovering the story as I go along. 

Did writing about Audrey help you?

I do think it helped. It was good to be able to put it down in writing. The frustrations. It got it out of my system. Caring for someone in that situation, particularly someone you love so much. You can sort of feel their loss. Audrey was such a competent person. She was the thinker, the organiser – the gaffer! To see someone so capable suddenly lose the ability to dress herself, to hold a conversation, to know she needed to go to the loo... It was just as if I were a nurse. So, writing about it did help. If people read the poems and they are caring for someone with dementia, I like to think they’d realise there is some hope. And I’d hope people would realise there is help. You know, right until the end, she knew she loved me. She was unable to walk, she was unable to talk. She lost the ability to say random words. But I knew she still loved me.​

You can get a copy of “Light in the Darkness” by Brian Sugden by contacting Cross Gates Good Neighbours. Drop in or call them on 0113 2606565.

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