March 09, 2016

when a carers horizon included another person...

 *These resources are available for loan to members of AANSW - if you would like to reserve them please email the Library on

One Yellow Door

by Rebecca De Saintonge

'My dear Jack - before I met you my life seemed like a train pulling a trail of empty carriages, and then there you were, and suddenly most of them were full - with people and noise and laughter, with faith and vision and your extraordinary, electric vitality. 'So now, my love, I know the worst. Your brain is shrinking inside your skull. You are going to disintegrate very slowly, mind and body. You will feel our loving in rags and your God absent and I will hold you to my breast and cradle the shell of your skull, for you will have gone, my lover, my dear one. But not quite. 'I know that I cannot bear the pain of Jack's situation any longer, unrelieved. To survive and provide him with the buoyant atmosphere he wants, I have to have hopes and horizons beyond him. These horizons have included another person. '~When Rebecca de Saintonge's husband Jack developed an incurable degenerative brain disease she faced the dual challenge of trying to keep the integrity of their relationship intact while also avoiding her own destruction within their diminishing world. She survived by taking a lover.

Jan's story : love lost to the long goodbye of Alzheimer's

"...Eventually, Petersen made a decision that is often privately made but rarely discussed. He felt his only chance of survival was to find new love..."
Barry Petersen, long-time CBS news correspondent, has an impressive list of endorsements for his book, including testimonies from Katie Couric, Brian Williams, and Rosalynn Carter.
This is a love story with a controversial and important ending.
Petersen and his wife met and quickly fell passionately in love. Their marriage was enduring and happy as they shared his life as a traveling correspondent. Then came the diagnosis that would explain Jan’s changing behaviour. Beautiful, vivacious, smart Jan was diagnosed with younger-onset Alzheimer’s disease.
Jan and Barry faced the challenge bravely, holding hands literally and figuratively as they fought this intruder. Eventually, it became obvious he couldn’t keep Jan safe and still work. With the blessing of Jan’s family, Petersen found an excellent assisted living centre for Jan in. The decision to move her was agonizing.
Jan continued to deteriorate and no longer knew “her Barry.” She knew a man called Barry, but he was a younger man whom she had loved. This man visiting her was a stranger. Depression gripped Petersen so severely that family and friends were concerned about his mental health.

The ethics of sex and Alzheimer's
Alzheimer’s punishes not only its victims but also those married to them. This book analyses how Alzheimer’s is quietly transforming the way we think about love today. Without meaning to become rebels, many people who find themselves "married to Alzheimer’s" deflate the predominant notion of a conventional marriage. By falling in love again before their ill spouse dies, those married to Alzheimer’s come into conflict with central values of Western civilization – personal, sexual, familial, religious, and political. Those who wait sadly for a spouse’s death must sometimes wonder if the show of fidelity is necessary and whom it helps.
Most books on Alzheimer’s focus on those who have it, as opposed to those who care for someone with it. This book offers a powerful and searching meditation on the extent to which someone married to Alzheimer’s should be expected to suffer loneliness. The diagnosis of dementia should not amount to a prohibition of sexual activity for both spouses. Portmann encourages readers to risk honesty in assessing the moral dilemma, using high-profile cases such as Nancy Reagan and Justice Sandra Day O'Connor to illustrate the enormity of the problem. Ideal for classes considering the ethics of aging and sexuality.



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