Caregiving experience-Lessons learnt
My sister Sunaina passed away just 10 days before her 58th birthday. She suffered from GIST cancer for close to 3 years. It is one of the most debilitating and painful diseases, aggressively attacking the entire body and the mind too.
Some of the things which helped us cope and to manage the disease were:
1. Information, knowledge and professional help
It all began with shooting pains in her spine and leg, which were wrongly treated as sciatica for 3 months. Correct diagnosis is therefore important and one should not avoid going in for proper tests. In her case when the pain did not subside she changed the doctor, who recommended an MRI,CT Scan which revealed a malignant tumour near the spine, later during the onset and spread of cancer cells, tests revealed that it had spread to various parts and organs of the body, first to the liver, other organs and to the brain. The doctors at PGI, Chandigarh recommended no surgery nor chemotherapy, only pain management. She was also advised to set her affairs in order, go home and to pray.
Besides PGI and Fortis, Chandigarh, we took the help of Dr. Deepak Rao and Dr. Kothari, both from Mumbai. Both these Doctors are M.D.’s but had moved towards naturopathy and do not believe in chemotherapy. Their advice and support was invaluable in managing the cancer. Their lifetime dedication and study is what was tapped for amelioration of pain, holistic treatment, mineral supplements and correct food.
Since she was never admitted to any hospital, was at home throughout except for regular check-ups, care had to be arranged at home, to engage help, and to make her comfortable. Towards the last few months she rapidly lost weight, lost her appetite and had to be goaded to eat like a child. Her bones began to protrude but fortunately her mind was alert up to the last 3 -4 days, perhaps due to no chemotherapy.
The patient must also be informed of the treatments, if possible.
2. Emotional Support from family and friends.
Sunaina decided not to return to the US, where she used to reside, shifting to Chandigarh to stay with our mother. This meant adjustments, both on her part, her son who had to shift too, and Biji, our mother, who was in her 70’s at that time, I was living in another city but spent time with Sunaina and had to take frequent leave from office. Other members of the family and friends chipped in also. Do not hesitate to take help and request for it too. A special thanks to Mohan Rana, our family friend and neighbour who was always there to lend a helping hand.
Spending time, socialising, going out, talking, laughing and being normal helped. Encourage visitors to spend time with the person, because loneliness is tough to deal with. We had get to gathers, parties, went walking in the beautiful parks of Chandigarh, Sunaina even came for a family wedding to Delhi despite being in poor health, was excited like a child throughout- meeting everyone and participating in all the functions. When she was bedridden on my birthday she arranged a surprise party, these small things were so touching.
Please also understand that a person who is sick has emotional upheavals, do not take things personally. Very often they become more blunt, aggressive, short-tempered. It’s important to express your love to them and forget differences, if any. Also mend broken bridges to the extent possible. Many people visited her and most of the time she cheered up on seeing them.
3. Manage money and financial affairs too
Money and finances are often an issue, have an honest talk with the person about money matters, organize, consolidate, help write their Will, get it registered, complete nominations for the banks accounts and for flats, for shares, securities, and any other assets. I would even recommend that possessions need to be reduced, gift, donate clothes, household goods that are no longer needed, during their lifetime. We leave too many loose ends sometimes. Choice for organ donation can also be discussed and relevant documentation done. Sunaina donated her eyes. If the patient raises the issue of the kind of funeral they wish to have, respect that, don’t try to impose your views. In her case she especially requested for Sai Baba devotees to sing bhajans.
4. Spiritual and religious faith
Sunaina’s own belief in pain not translating to suffering, faith in God, acceptance of her disease and patience helped immensely. We regularly listened to music, chanted bhajans, listened to talks by Gurus, read the Gita, recited the Mahamritunjaya jaap, whose essence is to not be afraid of death. She passed away peacefully at home with the family and friends she was closest to, including her son. It was a sad funeral but a large number of her family and friends were there, she did not die alone nor lonely.
5. Caregivers must look after their own needs too
Whether it is their own health, both mental and physical, it’s important that the caregiver is not neglected and falls sick too. Biji was a strong person but this tragedy was too much for her to cope with, she needed a healing touch too, Sunaina’s son needed monitoring constantly due to his medical condition.
Meantime another tragedy unfolded when my elder sister Sarita was diagnosed with a GBM tumor in 2006 and passed away in 2009,my mother -in -law and my brother-in-law passed away, one uncle and aunt too. Tragedies, sometimes, do not come alone. It was a really tough time, sometimes draining us mentally and physically. I was hopping between Chandigarh, Mumbai, and Lucknow every month. Biji had a beautiful tangerine tree in her garden whose fruits added such beauty to her garden for several years but in 2005 it began to wilt slowly and died in 2009 completely after the death of both her daughters. She planted it again and it blossomed soon after, that is the circle of life and death.
I lost both my sisters, but remember them for what they were: fighters, beautiful, independent, spirited and best friends though the loss and grief stays forever.
Dilbert, a father figure, from the Vedantic Society of California, wrote in his obituary for Sunaina that she lived like a traveller, never attaching herself to worldly possessions, believing in the impermanence of life, and was blessed with a smile that radiated intelligence and depth of character.
I feel good that we cared for her when she needed us the most.