When mothers are the sole caregivers...

I know of a mother who has a mentally challenged daughter, who requires
assistance for almost everything.

The most heart-wrenching and complicated issue is during the girl’s monthly periods, when it becomes mandatory for the mother to keep an eye on her every minute, lest she becomes an object of shame and ridicule.

The mother is managing the situation very smoothly, although going through her share of physical and mental exertion. The woman’s husband and her other children understand her plight and extend maximum help, both emotionally and physically. If she were to take care of all her daughter’s needs single handedly, her energies would deplete completely in
no time.

The case of a young mother committing suicide along with her 2 mentally challenged daughters in Bengaluru, a few years ago was a  different story altogether. The sorry state of the lady was never understood by her drunkard husband, leading her to take the extreme step. It should serve as an eye-opener to many a husband who shirks his familial and filial responsibility.

Strong emotions of helplessness can affect judgment and perception — that’s what pushed the mother into suicidal rage. It is a situation of a double-edged sword cutting her life energies — firstly, coping with the disability of her daughters, and secondly, the devastating situation of living with an alcoholic husband. The economic status of a woman in such a situation also makes a big difference. With a hand-to-mouth existence, these issues get magnified thousand fold.

Seeking help

Though both the parents usually face similar stress and anxiety when they have a disabled child, it is the mother who takes the brunt, who feels frustrated, exhausted and helplessly angry when she has to give round-the-clock care and support to the child.

If guilty feelings of not doing her best is tormenting a mother and are affecting her to the point that she becomes physically ill, it may be helpful to sort things out with an understanding person, such as a counsellor, who can help her get a proper perspective, and will explain the importance of maintaining good health for herself. It is important that she does go to the doctor or finds a way to take a break from the continued stress, which otherwise may push her towards suicidal thoughts.

Caregivers too have limitations and boundaries as far as their emotional and physical wellbeing is concerned. Pushed beyond the limits, they crumble and collapse. Trying to check one’s emotion and concern and offering continuous help may deplete one’s emotional energies and reserve.

Replenishing that is a major issue, which is possible only when one feels happy and content. But some lives are so deeply stuck in misery and helplessness, that it seems almost impossible to lead a normal happy life. They may go into a state of guilt and shame, in moments of joy. An expert can advise them that ‘they are not responsible for the situation’.

Joining a counselling group may be the best fit for many in these conditions, which may give a wider perspective — but family support comes as the most important prop. With the help of her husband and family, a woman can cope better and won’t crumble under the situation.  Family members must empathise with the fact that taking care of a dependent individual ‘constantly’, can be an exhausting task.

They must provide necessary support — at least to offer an occasional respite which will go a long way. Only when people go and stay in homes with disabled children and spend some time there, will they realise the magnitude of the stress and pain the parents go through. Instead of suggesting ways and means to deal with the situation, they should become the ‘means’ with love and empathy.