The burden of caring
By Aradhika Sekhon

“You get used to it after some time but once in a while you do wish that you could shift the burden a little, stretch your muscles a bit, go out into the open air with an untroubled heart”, says Inderpreet Gill. Fiftysix-year-old Inderpreet’s mother-in-law suffered a paralytic stroke two years ago. Being the eldest daughter-in-law, the responsibility of caring for her fell to Inderpreet. “She’s completely bed-ridden. The only change she has from the four walls of her room is when she’s put on a wheelchair and taken out to the verandah… she’s even lost her speech. But when she’s awake she’s constantly moaning out aloud. It’s okay by us, we’re used to the situation but visitors coming to our house feel startled and uncomfortable”.

Inderpreet is a caregiver or carer of a woman who, she says, was “never too crazy about me as a daughter-in-law. She was authoritative and autocratic. We never really shared a loving kind of relationship, something that would help one to handle this kind of a situation, but still one does one’s best, although I must admit it’s a painful duty”.

Mrs Garg (name changed) faces a dilemma of a different kind. Her 86-year-old father, whose main malady is old age, has been ailing for the past few months and requires care but he categorically refuses to leave his old house and shift in either with Mrs Garg or with her brother, based in Panchkula and Chandigarh, respectively. “Papaji has a huge mansion of a house in Chandigarh which he absolutely refuses to leave to live with us. It becomes difficult for us to leave our homes and families and move in with him so either my sister-in-law or I have to be with him every day. Once he slipped and broke his femur. I had then shifted him to my house. But he was so cantankerous and unhappy that I had to move into his house with him till he got on his feet again”. This kind of long-distance care-giving is tiring and stressful.

“At his age one is always on tenterhooks—supposing something happens, will he even be able to reach the phone?”

The problem perceived here is of an ailing man who refuses to come to terms with his failing physical and mental health thus causing inconvenience to all around. However, Papaji views the situation differently. “Why should I be forced to quit my house where my children grew up and my wife died? I’m very comfortable here and I’ll be happy to die here…”.

“Making Euthanasia legal in Denmark was a right step”, says Dilip Kumar (not his real name). Dilip’s wife died a couple of years ago, his son is settled abroad and Dilip has a sick mother to care for. “She’s been in a coma for the past eight months. She’s 80 years old and is unlikely to come out of it. This seems like a terrible thing for a son to say but for her sake, and mine, I wish God would take her. She (his mother) used to be a totally self-dependent woman. To see her in this state is pathetic and terrible”. Luckily Dilip is in a position where he can afford specialised care for his mother. “In spite of that, my life and routine have completely changed”.

Even if the invalid in question is a loved one, the caregivers may experience some change in their feelings for him or her. Even lifelong associations that have been founded on love and care begin to crack under the strain. But most people discover reserves of strength, which allow them to shoulder their responsibilities. Some people chafe under the burden, some carry it with resignation. Probably it is the Indian value system that gives caregivers enough strength to fulfill their responsibilities towards their parents/parents-in-law. But most caregivers agree that previously formed bonds of love makes it easier for them to look after the invalids, for they have happy, loving memories to see them through.

One such person is Mrs Ranjit Singh, whose mother has been suffering from Alzheimer’s disease for the past four years. The lady is now completely bed-ridden and as dependent as a six-month-old baby. She has lost her power of speech and recognition but Mrs Ranjit Singh lovingly looks after her. “She’s been such a wonderful mother and this is the least I can do for her. Also, my whole family, my husband, my dad, my daughter-in-law are so completely supportive. They never let me feel demoralised or alone. Of course, I had to curtail many activities but we are managing well”.

An invalid in the house means changed orientations, altered routines and social interactions and a complete turnabout not only in the lifestyle of the caregiver but the entire family. The Sharmas, for instance, can never think of going even to a movie together because of their wheelchair-bound invalid son who needs constant care. Their nine-year-old daughter Neha accepts her brother the way he is but has had to learn to live with fact that her mother is required to spend more time with her brother than with her.

It might not be easy for a person to perform the role of a caregiver, but it is also trying and difficult for the person who is being taken care of. No one likes to be in a position where one is bodily helpless to do anything oneself. Secondly, the feeling of being dependent upon another, be it your own spouse or child, is a debilitating feeling. And thirdly, there is life — too precious to let go off and too painful to continue with.

What caregivers wish for….

“Someone to take the load off sometimes”.

“Some time to myself—to do what I want to”.

“A support group which can offer help”.

“Affordable, trained help”.

Are you a good communicator?

How good are you at expressing your ideas and feelings effectively in your professional and personal relationships? Answer these questions to find out.

1. A computer technician at work has made a serious error. How do you handle the situation?

a. Fire them – in no uncertain terms.

b. Discuss the situation, how the error came about, and how such mistakes can be prevented in the future.

c. Apologise for having to bring the subject up.

2. You have a great idea. How do you present it to your boss?

a. With a carefully thought-out presentation, including slides and graphics if necessary, and hand-out sheets.

b. With a quick explanation, then you rush out of the office to implement it.

c. Over coffee.

3. One of your colleagues has a problem with punctuality, and it means that you have extra pressure when he is late. What are you more likely to do?

a. Ignore it — it’s for the boss to sort it out.

b. Carefully explain to him that the situation is affecting you, and ask him whether he could please be more punctual.

c. Have a row.

4. You are determined that certain things in the office must change — for example, better toilet facilities and a decent kitchen. Do you:

a. Get the rest of the staff on your side, then ask politely but firmly for what you all want.

b. Propose that everybody go on strike until the demands are met.

c. Write a note to your boss and give up if he doesn’t respond.

5. When you are confused about an issue in the office, do you:

a. Pretend you understand.

b. Ask for clearer explanations and examples.

c. Refuse to proceed until the confusion is cleared.

6. You have reached home after a busy day. Your partner is home before you — but dinner is not ready. Do you:

a. Rant and rave about whose responsibility it is to cook.

b. Ask them if they are exhausted too, and how about eating out?

c. Quietly get on with cooking dinner

7. Your 12-year-old daughter wants to spend the night at a friend’s house — but you think the friend is a bit wild and you’re not sure. Do you:

a. Ask her to have the friend over to your house instead.

b. Refuse to let her go.

c. Give in and let her go with barely a murmur.

8. Your older child has just passed his driving test and wants to drive to a holiday destination 400 miles away. What do you do?

a. Explain that you simply couldn’t bear the worry, and offer to pay the train fare.

b. Agree to let him go and spend a week of misery at home, waiting to hear bad news

c. Take the car keys away.

9. Your next-door neighbour has complained that your hedge is too high — it’s cutting out her light. How do you handle the situation?

a. Tell her you’ll see her in court first.

b. Agree to trim down your hedge so that you meet halfway.

c. Meekly cut off half your hedge.

a. Sympathise and focus on the insurance.

b. Feel angry but are unable to express your feelings.

c. Have a huge slanging match.

1. a0 b10 c5
2. a10 b0 c5
3. a5 b10 c0
4. a10 b0 c5
5. a5 b10 c0
6. a0 b10 c5
7. a10 b0 c5
8. a10 b5 c0
9. a0 b10 c5
10. a10 b5 c0

70-100: You are an excellent negotiator, with good interpersonal skills.

Your ability to communicate calmly and effectively makes you a real asset in the office, and at home. Your partner might get a bit irritated by your relentless calm though, so try not to be patronising.

40-65: You have poor communication skills. However angry or anxious or puzzled you may be, you cannot find a way of expressing yourself. You have to try and organise your thoughts and priorities.

State your case firmly, in writing where possible — even when dealing with the family. Make sure that you are telling the truth about your feelings, and insist that others listen.

0-35: You are also a poor communicator, but not because you can’t express yourself. On the contrary, you express yourself only too well. You have a low temper threshold and fly off the handle very easily. You tend to bulldoze through other people’s thoughts and feelings and make no attempt to understand or sympathise. Back to the drawing board with you. Remember — listening is half the battle. 
— (Asia Features)