A caregiver never has it easy

A caregiver never has it easy

A caregiver is perhaps the least celebrated person in a family with someone suffering age-related problems or a debilitating disease. The caregiver’s mental and physical health is overlooked in the run-up to caring for the ailing person. So, what should the caregiver do? Succumb to the pressure or find ways to cope with it.

Seema Kumar

My very active, stylish, impeccably dressed mother one day fell and broke the hip of the leg that she had restored with a knee surgery. Here she was looking forward to a better life with no pain movement after the knee surgery (from which incidentally, she recovered fully), when the fall put paid to all her dreams. She never managed to recover from the fall despite a surgery, recuperative physiotherapy and the best care. Other health issues welled up and it wasn’t long before she got confined to the bed.

My husband and I ensured the best of medical and personal care for her. Yet there remains a constant pang of hopelessness. From both sides. For a person who lived life on her own terms, she was suddenly dependent for the basic needs. It began to rankle, and as her daughter, I ended up bearing the brunt of her disgruntlement. As much as I wished to take it in my stride, there were times when I would become snappy too. Then sit and cry questioning whether I was not a good enough daughter to my mother who has perhaps sacrificed her sleep for me when I was a child.

Dilemma of a single child

It’s been over four years since I have had a good night’s sleep. Any loud sound is enough for me to spring to my feet and check on my mother fearing that she has fallen again. Despite the fact that she has 24-hour help, there is no end to my constant worry.

Being the only child, she has no other family besides me. It’s just her and me. I am the only person she can turn to for her needs. So, I am always on call.

It’s not easy being a caregiver. Physical, mental, emotional and financial exhaustion are the forms that a caregiver’s stress can take. It can lead to health issues for the caregiver, such as high blood pressure or sleep issues. If the patient is a parent, the added emotion of role reversal adds to the toll. Seeing a very active parent become non-functional, immobile without help and sometimes non-cooperative can be taxing. It leaves the caregiver feeling alone, sad, angry, frustrated. Financial difficulties, depression, a halt in social life are just a few of the fallouts for a caregiver.

One is constantly worried, overwhelmed by the situation, always angry and irritated, tired, and unable to draw boundaries between the role of a caregiver and the other roles of a husband, wife, child, etc. All this results in self neglect, both physical and emotional. One talks about professional burnout but in this case, it can result in caregiver burnout.

As per a study, 40 to 70 per cent caregivers suffer from depression and many suffer from anxiety as a result of the stress of providing care.

In the beginning, I would become short tempered and have arguments with my husband on irrelevant issues, be constantly on a short fuse, quick to pick a fight with him. He is the closest, so it was easy to just lash out at him. It’s incredible how he patiently ignored some of the outbursts and let them go. Over the years, I have managed to calm down and become more tolerant. Yet the mind is never at peace. The worry and stress are a constant.

Deepika Padukone in ‘Piku’ had to listen to her elderly father describe his bowel issues every waking moment. I listen to a different health problem every day. Pain, constipation, loose motion, cough, body ache, bloated stomach – you name it and it’s there. Every day is a new day with a new problem. One can sit and see the humour in the situation sometimes but only after the situation has been taken care of, never during it. During the situation, the feeling is helplessness, frustration or total detachment. Now, I sometimes try to alleviate the situation with a little light heartedness and I notice that it does work. At least it gives temporary relief.

It is not easy to see a loved one suffer. One starts to feel guilty at one’s own happiness. When she takes a turn for the worse, it is difficult to watch. There are times I pray to God to alleviate her of the pain suffering at the cost of my own guilt. It’s a heavy burden to carry!

Full-time job

We have hired two medical attendants and a full-time attendant to ensure that she is always taken care of despite the financial implications of digging into our own savings for medical exigencies.

Caregiving is a full-time job. And for someone to say, “take care of yourself,” is an understatement. It never happens. One way to look at it is to stop thinking of caregiving as a burden. Treat it like any other work that one does, it makes things a little easier to handle.

My mother is never far from my mind. I quit my job much before she had the fall, but am still gainfully occupied. Yet my day revolves around her and ensuring everything is moving smoothly. Even an outing or a holiday is planned keeping her well-being in mind. All our plans of leading a semi-retired life, travelling, doing and enjoying things that we could not during my stressful job have not been fructified. To say that I don’t resent it, will be being dishonest. It does. But we have made a choice and have managed to work around it.

All my life, reading a book in a corner of the house has been a stress-buster. For the last four years, all I do sitting in that corner is introspect on how good or bad a daughter I am. My mother and I have seen both good and bad times together and she struggled to give me a good education. Today, here I am second guessing everything I do for her. I am my own worst critic!

Learning to cope

Till I found my own way of dealing with caregiving stress, and emotional and physical exhaustion. I took up knitting and colouring books. These two activities took me to a different realm altogether. I am totally tuned out and am at peace with myself. Yoga has been another stress-buster.

So, it’s alright to accept help from others even if it is to buy groceries, cook or once in a while give you a break from caregiving. Guilt is normal – of not doing enough, of taking time off for yourself but get over the guilt. No one is perfect. Neither are you. Every caregiver is doing the best in caregiving. It’s always easier if the responsibilities are divided and prioritised in the order of importance. Don’t isolate yourself from others. Meet friends, family, have short breaks once in a while to meet up and chat. A support group can be a wonderful help for problem solving. Eat well, sleep well, and try to keep your spirits as high as you can.

A caregiver is human too. Much as we would like to be always gentle and tolerant, there are days when our mental state too is not the best. As a dear friend constantly tells me, “Be kind to yourself. You are giving her the best. So, stop doubting yourself.”

Now I try to follow her advice as much as I can!