Thirty-five years ago, I married the most handsome man I ever knew. He was intelligent and affectionate. We have a daughter and a son, both of whom adore their father. He retired as executive director of a public sector company after a glorious career. Then, his behaviour and temperament changed; he became quarrelsome and abusive with family, friends and neighbours. After several scans and doctor visits, he was diagnosed with dementia.
It was a rude shock to all of us, and worst of all, to me. I realised I had to take care of him all my life. It was difficult to be mentally prepared to do so. Gradually, he lost his language skills, memory, cognitive abilities and even the faces and names of his close relatives. Medicines were prescribed to delay further deterioration. But due to a fall, he was bedridden for two months. And when he abstained from his everyday activities, his condition worsened. It has now been four years and I have been the sole caregiver for my husband. It is not easy — every day, I experience depression, anger and guilt alternately.
Our son moved back from abroad to live with us. He is a great source of strength to me and is my only confidant. My daughter stays nearby and offers her support as well. Right from his morning routine and regular toilet visits, I have to be alert and patient. I learnt to associate his shivering and fever with urinary infection for, like an infant, he is incapable of articulation. He sometimes loses orientation with time and insists on taking his bath and eating at odd hours. When he gets stressed, he chews his pills instead of swallowing them. Sometimes, he is constipated for days. He cannot express his discomfort or pain. I have to infer it from his behaviour.
He used to pay our monthly bills online until a few months ago. Now, he can hardly handle his mobile phone. A child learns a new trick every day and adds it to its memory bank. With those with dementia it is the reverse — memories get slowly delinked.
In old age, a man can look back on his life, career and family with pride and find comfort in the love of his grandchildren. For my husband, this opportunity has been denied. Embittered by his pitiable condition, I have lost my religious faith. I have developed ailments and seldom leave the house, and on most days, wonder if I will get to talk about anything other than medicines and poop routine.
A year ago, I joined a caregiver group to exchange notes and de-stress. But in India, such groups are yet to evolve — and be productive enough to be of any help to the caregiver. I divert my attention by browsing the Net and reading on my iPad. I walk every day and ensure I get my 20-minute breather before going back to care for my husband which I will never cease to do. I know things are going to get worse in the days to come. I pray and hope that I find the strength and courage to take care of him in the forthcoming years. My only wish is that I outlive my husband so my children will not suffer.
