Love, Anger and Guilt All at Once

Gopal and Saroja have been married for forty-six years. Five years ago, Saroja began to forget things. Now she has dementia. She does not always recognise Gopal, and some evenings she becomes frightened and angry, and shouts at him to leave her house. Gopal is seventy-four. He cooks, bathes her and gives her medicines. Last month, a terrible thought came to him while he was washing her hair. He thought, “I wish this were over.”

Feelings that pull in two directions

Gopal was horrified by his own thought. He loved his wife. How could he wish for her suffering, or his, to end? He did not tell anyone. He felt so ashamed that he could not look at his own face in the mirror.

What Gopal did not know is that this feeling is extremely common. When someone is lost but not gone, the people who love them almost always feel pulled in two directions. They want the person to stay, and they want the situation to end. They want to help, and they want to run away. They feel love and anger at the same time. These are called mixed feelings, and they are an ordinary reaction to a situation that is anything but ordinary.

The guilt is the heavy part

Pauline Boss points out that the mixed feelings themselves are not the main problem. The problem is the guilt and shame people feel about them. When the feelings are kept secret, they often come out in other ways: as headaches, sleeplessness, short temper or depression.

Gopal’s doctor noticed that he looked exhausted and asked how he was. Gopal broke down and told him about the thought. The doctor did not look shocked. He said, “Almost every carer I know has felt this. It does not mean you want to harm her. It means you are tired, and you are grieving for a wife who is still alive.”

Gopal said afterwards that he felt lighter as soon as he had said it out loud. The thought did not go away completely. But it stopped feeling like a terrible secret.

Point the anger at the illness

Gopal also felt angry, sometimes at Saroja herself. When she shouted at him, he wanted to shout back. Sometimes he did, and then he felt worse. The doctor suggested a different way of seeing it. “The person shouting is not your wife,” he said. “It is the illness. Be angry at the illness if you need to. Saroja is on your side, even when she cannot show it.”

Giving the feelings somewhere to go

The doctor also told Gopal that he needed some life of his own. A carer who never rests becomes ill, and then there is nobody to look after the person who is ill. Gopal’s daughter began coming on Saturdays so that he could go out. He started walking in the park with an old friend. He joined a bhajan group on Thursday evenings. Singing with others gave him a place to put his sadness, and some evenings it gave him back his laughter.

Gopal also joined a support group for families of people with dementia. Groups like this are run in many Indian cities, for example by the Alzheimer’s and Related Disorders Society of India. For the first time, Gopal heard other husbands and daughters say the things he had been too ashamed to say.

How it is now for Gopal

Saroja is weaker now, and Gopal knows that she will not get better. He still loves her, and some days he still wishes it were over. He has learnt to let both feelings be there, side by side, without hating himself. On good evenings, Saroja holds his hand while he sings to her, and she smiles at him as if she knows him.