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Caregivers need care, too

Caregivers are often neglected, but they nevertheless need much support.

The responsibility and stress of caring for someone with Alzheimer's disease, for instance, is enormous.

My husband, a retired general practitioner, was a workaholic, a voracious reader and one who enjoyed his morning walks. But in 2007, at the age of 80, he was diagnosed with the disease. Instead of enjoying our golden years, I became his main caregiver.

I was ignorant of the various stages of the disease at first. Being well-informed was important. Programmes that teach families about the disease and other caregiving challenges can help.

Initially, I had people from the Alzheimer's Disease Association coming to help my husband on a weekly basis. They had a standard format of stimulating the brain with games - for example, throwing and catching a ball - as well as reading the newspaper and writing. Such activities, however, did not go down well with him, as his interests were different.

We then engaged a private physiotherapist to come down weekly, as my husband had difficulty walking. She spent time talking to him and found out that one of his interests was boxing. She brought along a pair of boxing gloves and he had very stimulating and enjoyable sessions.

Alzheimer's is a progressive degenerative disease of the brain, and takes its toll on not just the brain, but also the whole body. Besides memory loss and cognitive decline, the patient's physical needs increase with time. When he finally becomes bed-bound, he will be totally dependent on the caregiver for all his needs.

My husband is in the final stage now. There are times when he is lucid for a brief moment and has a smile. All along, he has been treated with respect and dignity.

Quality of life is important and depends on good end-of-life and legal decisions made. It may involve invoking the Advance Medical Directive or a Lasting Power of Attorney.

The late Mrs Nancy Reagan, who had been caregiver to her late husband, former United States president Ronald Reagan, an Alzheimer's sufferer, had called the disease "a long, long goodbye". Caregivers can feel frustrated and isolated on this journey, and need much support to sustain them.

Indira Ravindranath Menon (Mrs)

A version of this article appeared in the print edition of The Sunday Times on April 16, 2017, with the headline 'Caregivers need care, too'. Print Edition | Subscribe