When Debashree Chowdhury, 65, suffered a stroke in Calcutta, she was lucky her domestic help was around and able to call for an ambulance. She also informed her sister, who reached the hospital within half an hour. Daughter Jayashree, 35, flew down from Bangalore within a few hours and handled the required formalities for her mother’s treatment.
While immediate crisis has been averted, Jayashree is still struggling to find a long-term solution as medical experts have found 4 blockages in Debashree’s heart and the reality is she cannot live alone. Her US-based brother, Joy, 38, is financially supportive but unsure about contributing beyond that in the present situation with a high-pressure job.
“I would like to be there for mum but I have a family to take care of,” says Jayashree, who lives with her husband, Girish K, 38, and two children. “Girish is opposed to the idea of her moving in with us. I am torn between shifting her to an elder care home or moving base to Calcutta until she is independent again.”
What Jayashree is facing is a common situation for many children who try to share or struggle with new caregiving responsibility and changed dynamics. A difficult transition is in process as one realizes that parents cannot take care of themselves. Emotional, physical, practical or financial support whether occasional, partial or complete must be provided ‘now’. Lives have to be adjusted, schedules swapped and possible resources tapped as one also learns how to emotionally cope with the changes.
Full-time caregiver and creative consultant Shalini Vaswani, 45, had no idea what caregiving meant when she gave up her life in Mumbai to move to Bangalore where parents Brajesh, 81 and Leela, 76, reside. “I moved in with them after my father had his stroke. Soon after, my mother was diagnosed with Alzheimer’s and all their other ailments and conditions came to light. Both have osteoporosis and a tendency to fall,” she says.
Shalini’s temporary move now looks permanent. “As their only unmarried child, I always knew it is my responsibility since my parents refuse to live in the homes of their sons-in-law,” she explains. “I am one of five sisters. Only one of the other four thinks that they are our responsibility. She lives in Delhi, but visits every month or so to give me a break. My other sisters have good intentions, but appear incapable of disrupting their lives the way the two of us do.”
“I had imagined, before this, that all I’d need to do was take care of the household. That I could continue to work and live my life. When I finally understood this was no longer possible, it was a huge shock and even after a year, I still haven’t managed to come to terms with it. Plus I am suffering clinical depression since 2008. This has made it worse.”
The situation is relatively smoother for Kalyani, 65, whose aged mother Vijayalakshmi, 85, has been living with her for over four years now. She has mobility issues and needs to be monitored 24 hours, to protect her from falling and injuring herself. Since Kalyani’s brothers share financial responsibility, they have two paid care-givers, Valli and Bala, who work in alternate shifts.
“My husband is a huge moral support,” says Kalyani, a volunteer for visually challenged students. “We ensure that my mother and her carers are comfortable and happy. We treat the carers well, with respect, they are part of our family now.”
It was tough initially when they had to change carers 7 to 8 times. “My mother used to be adamant, non-cooperative and frustrated. She could not accept the fact that she was dependent. Whoever arrived, would leave within two months. With Valli and Bala, there is peace in the house.”
Many factors are at play when it comes to sharing caregiving. Sibling dynamics, geographical distance, relationship with parents, capability, finances, a sense of personal responsibility and flexibility to name a few.
Let’s look at some common caregiving scenarios and how best to work as a unit to help your loved one journey through their final stage of life.
Primary or Full-Time Caring
A primary caregiver invariably ends up taking the full burden of caring being closest in proximity. Like in Shalini’s case, “Emotionally, I am a wreck. Mostly happy that I’m there for my parents, but also angry that I have no life, I can’t go out and meet people. The only things I talk about are illnesses, doctors, treatments. I feel guilty for feeling angry, hating all my sisters except one!”
Assuming that one person will take full charge without considering their emotional state of mind is risky. “Every family member should have proper understanding of the situation; the responsibility of taking care of the elderly person needs to be shared by everyone, including the children; the burden should not fall on a single shoulder,” advises Kalyani.
“Caregivers need to have regular space, to do what they like for at least an hour daily – read books, play, and watch their favourite TV show, stroll in the park, nap or chat with friends. It could be anything but that ‘one hour’ is totally theirs. There is no need to feel guilty or toil like a filmi mother or bahu; that will only emotionally and physically drain them, plus be counter-productive.”
With increased lifespans, more seniors like Kalyani are turning caregivers. Like Aruna Srinivasan, 61, and Srinivasan Rajagopal, 66, are looking after her ageing parents, Shridharan, 94, and Prema, 89. Two other siblings share financial costs but the physical and emotional burden is theirs to bear.
Siblings who live faraway often don’t understand the extent of care required until they experience it personally. As Boston-based Malishka Rajan did. “I realised the burden on my siblings in India when I came here to look after my grandmother twice when she broke some bones and my mother, for four weeks, as she recovered from an aneurysm. We are financially responsible but have it easier.”
How to Cope
- After the first crisis is averted, discuss next steps together. Don’t assume that the person who is closest will automatically take care. Even if they do, ensure they have necessary resources. Provide concrete help. Consider a temporary or elder care facility, if required.
- Share all burden equally, to avoid conflicts. Be direct about financial concerns as it will affect caregiving decisions. The primary caregiver must get breaks periodically. Switch care duties every few months. Try to stay in touch with parents, even if they don’t live with you.
- Review continuing care, progress and decline, at every stage. Think as a group. Meet, email and talk regularly so everyone understands the complete situation.
- Take shared decisions but trust that the person closest is the best decision-maker, especially if you live in a different city or country.
- From a distance, the picture looks rosy and it’s hard to ‘accept’ your parents need support. For the primary caregiver, however, it’s practical reality. Trust them; they know what’s required and lacking. Whether routine assistance with grocery, general shopping, travelling, payments or coping with bodily changes such as memory loss, weakened bones or failing sight.
With empty nesters and children who are abroad, geographical distances and emergency visits are now a hard reality. You fly down halfway across the world, or not. Either ways, it’s a challenging situation.
Asha Patkar who got the dreaded phone call from India, one fine morning in San Francisco, says, “My Dad was diagnosed with cancer, a 16 cm tumor, edges uncertain, it had grown in his pelvis, the dome palpable through his spare abdomen.”
Despite niggling issues and sensitive dynamics when they started off, the family team managed this medical project beautifully. Sister Meena stayed back in the US and contributed from far. Husband Rajesh took care of logistics, friends rallied around to care for her two daughters. Home-cooked Indian meals were delivered and fed to the family. While Asha was enroute to Mumbai, Meena set up investigative appointments at hospitals to enable urgent imaging and pathological tests. Results were emailed back to Meena for expert overseas opinions while Asha spoke to four top local surgeons, three in Mumbai, one in Pune.
“The surgery was fixed within two days. As we reached the operation theatre, surgeons told us he was hemorrhaging badly and needed more blood. Again I texted, and within ten minutes Meena sent me possible options. I relayed the information and blood was obtained,” says Asha. Their father fully recovered. “In those five months we were a real team, no matter how dysfunctional otherwise. My mother, my sister and me.”
Unfortunately only offspring Anita George, 39, who lives in Canada, wasn’t so lucky. “My father was admitted into a local hospital Wednesday night and Friday as I was going to leave, he passed away. Even though I had the resources, I couldn’t find help right away,” she recalls painfully.
Her father was lonely, had drinking issues and was diagnosed with jaundice. Advised to stay away from alcohol, he couldn’t and collapsed. Since Anita’s parents were divorced, he lived alone closer to his relatives in Secunderabad.
“The maid called a relative, who informed me only after admitting him. I tried moving him to a private hospital but an advance of ₹30,000 was needed and it was a bank holiday. By this time, he slipped into a coma and his organs started failing,” she says. Anita’s mother lives in Canada now, closer to her.
Girija Sharma, 37, is constantly worried about mom, Shanta, 70, who lives alone in Bangalore. “After my father passed away recently, the house still holds emotional value for her so she won’t leave it. She loves her routine yet misses us. Lonely, but won’t say it. Now she has health issues. I fear it will only get worse,” says Girija.
“I feel terrible for not being with them and am still figuring out how to make this work. 6 months in US and 6 months in India perhaps? I don’t know.”
That is exactly how visiting carers, San Franciscan, Barkha Vijay, 40, and her Canadian brother Ashok Vijay, 44, have been living for three years. Father Vijay Gopal, 65, suffered a stroke in the US and has needed full-time care since. “He lives with my younger sister, Jyoti, and brother-in-law Rajan in Mumbai. Ashok and I visit dad at six-month intervals and stay for 3-4 weeks, giving them a break. Plus for any emergency, hospitalization, we go back,” says Barkha. It is clear that they work as a team to ensure their father gets the best attention.
Others find ways to support from a distance. Dubai resident Ashutosh Kadam, 43, orders groceries for his mother online and gets it delivered to her door via Big Basket.
Rahul Varma, 42, keeps track of mother Chinmayee, 65, in Pune from Singapore. Wife Srividya Ramesh, 38, says, “Her other son lived very close earlier but they moved to the US in January. Now the primary onus is on us. She has learnt FaceTime so we help her sort out bank documents.”
She is independent and healthy so far; goes for outings with friends, has full-time help and calls in local taxi service. “Her life is in Pune so she doesn’t want to move but we still worry about her health, mainly her fluctuating blood pressure. It is scary. With the absence of a direct flight from Singapore to Pune, we don’t feel close enough. We call every other day,” says Srividya.
How to Cope
- Even if you live in a different city or country, visit at regular intervals. A lapse could lead to a shock upon return. They look much older, are short of breath and losing balance. There are memory lapses, their prescription list has increased.
- Though your parents may appear independent and say everything is well, as a periodical carer, be alert. Look for little cues during phone calls and visits back home. Ask about their daily routine, health, transport and domestic help situation.
- Technology also helps cover the distance. Teach them how to operate a tablet and check on them via video calls using Skype or Facetime.
- Keep in regular touch with your sibling who lives closer, or is caring for your parent full-time. Try to reduce their burden. Make that a priority and give them a break.
- Identify a local emergency contact, accessible family doctor and hospital care, if a parent lives alone. Leave instructions on where to admit them in an emergency situation. Ensure the responsible person has instant access to a reasonable amount of money for hospital admission and emergency care.
Whether you are a child, sibling or a caregiver it is best to be clear, honest and solution-oriented in a challenging situation. Sharing a good bond as a family is constructive, as you are able to discuss and execute the best possible solution. Otherwise it’s difficult to communicate, especially if you didn’t connect as children and feel further apart as adults. It is natural to feel frustrated and helpless, causing tension within members. But it also unites you, as you overcome negativity and come closer as you find a resolution together. Remember that the goal is your parents’ well-being, it helps to be positive and open.