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After the shadows of decay, a calm ending

06 July 2012

There is a time to fight and a time to accept, says Janet Eastwood, whose mother suffered from dementia


Illness and death are so hard to deal with - never more so than when it is someone we love, and who has been with us since the earliest days.

We first recognised the changes in the mental health of my mother, Vera, about five years ago. We had noticed lapses in her memory before then, but suddenly things started to happen that couldn't simply be put down to age. Eating was not a problem in itself - provided she remembered to cook. Her immaculate clothes were taking on a shabby air, mostly because she wasn't certain how the washing machine worked.

She was also bored, as the ability to sew and knit disappeared, and Countdown on the TV became an unmissable ritual, as she worked desperately hard to keep her mind exercised.

But Alzheimer's is unremitting. Carers had to be brought in, and meals prepared and put in front of her, and her car was no longer hers to drive. This was probably the hardest cross for her to bear, as it signified the end of her trips to church and to Tesco, and so the end of her independence. It probably made the roads much safer, however.

As she wound down mentally and physically, our efforts as a family increased, until, in the final year, with the wonderful support of carers, we managed to provide 24-hour care for her in her own home.

She fought her memory loss - and her family - with zeal. At times, she had the odd glimpse of reality, and knew that her memory was disappearing: she was fearful. At others, we were interfering, overbearing control-freaks who made her life a misery.

Then, out of the blue, would come the words: "I love the bones of you," and her anger would disappear. Then we took a deep breath, and started again.

Vera was certainly not prepared to "go gentle into that good night" (as Dylan Thomas suggested, in a poem written about his father towards the end of his life). Some books have been written on the premise that dementia can be creative, controlled, and even contented. This was not our experience.

Vera hated her diminishing powers. She had a sixth sense when we would try to gloss over any difficulties, and, in truth, we found it very hard to lie, as some of these books advocate. The saving grace - and I use that word carefully - was the love, care, and support of many people.

The carers became friends to Vera, and worked seamlessly with my brother, his wife, and me to keep the routine going. Friends went beyond any call of duty to visit and to share the increasing burden of care. Simply to know that one of them would always be on call to go to see her was of immeasurable value.

Then there is prayer. When we were too exhausted or upset to pray, many others kept the prayer going. When tiredness made the routine endless and empty, other people's prayers nourished and sustained us, and, somehow, the grace of God would glint, and shine through the love and concern of ordinary people doing extraordinary things through prayer.

In the last few weeks, my prayer was the words of Simeon in the Temple. It became my mantra, repeated every hour: "Lord, now lettest thou thy servant depart in peace. . ." Then I discovered that others were also praying for peace; and God slipped back into my reality again, and it was good.

Vera's last afternoon and evening were good. We knew that she was dying, and, after pain-relief had been administered, she was finally able to relax. At last, the peace we had prayed for was restored, and she slipped quietly away - the fear and rage finally gone, and her family with her, as always.

Certainly, there is a time to fight, and also a time to accept. Vera fought her dementia relentlessly, but remorselessly it took over her and our lives. But, for her, there was another, far more important part of the equation, and that was her steadfast faith. At hard times in her life, Vera would quote a hymn learned and loved from childhood, which for me became God's assurance of her future with him.

How good is the God we adore;
Our faithful, unchangeable Friend:
His love is as great as his power,
And knows neither measure nor end.

'Tis Jesus the first and the last,
Whose Spirit shall guide us safe home;
We'll praise him for all that is past,
And trust him for all that's to come.

Vera never accepted her physical illness, and certainly couldn't come to terms with her dementia, but, right to the end, we knew that this hymn, written in the 18th century by Joseph Hart, was her creed and the absolute promise of her salvation. At her funeral, it was read out to remind us of her indomitable spirit and the Christian hope that sustained her.

The last lines have become our thanksgiving for her long life, filled with love and faith, as we trust God for all that lies ahead for her in the life beyond death.

Canon Janet Eastwood is Rector of Holy Trinity, Wavertree, in the diocese of Liverpool.

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