Brian and Audrey
Audrey & I met in November 1960. I was eighteen, she was nineteen. We married on her 22nd birthday in 1963. We've had a good life together, the usual ups and downs that all couples have from time to time but a good marriage nonetheless including two fine sons. The love is as strong now, over a year after her death, as when we wed. I keep saying that I could search for a thousand years but wouldn't find a better wife.
Audrey was always the organiser; she was really good at it. Two stints as Churchwarden 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. So, it was 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 and a trip to hospital where the dreaded diagnosis was made. Since then, I have 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, so she obviously knew that something was wrong.
It was weird having to take over; the finances, the housekeeping, the washing and ironing, the cooking and cleaning but, gradually Audrey did less and I did more. Fortunately, I'm not sure how, I made contact with Carers Leeds, Crossgates Good Neighbours, HOPE, Tea Cosy Cafe and Garforth NET who, between them have 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.
I have found music to be a great lifter of spirits. XGGN have a Sandwich and Song session on the first Tuesday in the month. I go there and sing my heart out, a great reliever of stress. I have been fortunate in becoming friends with the musician involved and we are hoping to set ourselves up as a musical duo so, watch this space.
That stress abated somewhat as Audrey had to go into permanent residential care, her decline had been enormously quick. There were still stresses though, I called in one particular day and, it being teatime, I was left to help Audrey with her tea. She wasn’t feeding herself by then, she 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's difficult to remember how much I love her. Times like that are truly heartbreaking. Audrey had by now lost all sense of balance so, where I was intending to take her out (especially to the Garforth NET coffee morning on Thursdays) I couldn't anymore. I lived in hope that she would recover some of her mobility but I didn’t hold my breath.
I have friends who told me of their wives beginning to live with dementia long before Audrey was diagnosed who have not deteriorated half so quickly. This disease is as unique as the person suffering, no two sufferers are alike.
All I can say is, keep loving the person you're caring for - it's still them, cultivate patience - they can't help frustrating you; and 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 but, when my prayers for her to be well and later for her not to deteriorate proved fruitless, I railed at God and quit the church. Something, however, pulled me back; I don't know what but I'm glad I went back. I can't describe how differently I look at things now; I can still see the negatives but am able to concentrate more on the positives (cue for a song?)
The feeling I'm fighting now is guilt. Audrey is now gone. 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 isn'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 in her last few years compared with mine 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, we 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.
This was written after a somewhat difficult day caring for Audrey
You’ve gone, you’ve left me, my dearest love
But I’ve not lost you to heaven above
For you’re here beside me, but you’re not you
Though your voice, your face are the same it’s true.
No, my loss is not through death’s decree
But dementia has taken my love from me
The plans we made for our later life
Have disappeared in this confused strife.
I look at you, whom I love so dear
And it hurts that your no longer here
Where you’ve gone,I cannot know
I only know I still love you so.
One day, maybe, we’ll be as one
When our time on earth is done
In God’s sweet heaven we’ll then abide
Then once again you’ll be my bride.