Name: Sahiba Kaur
Occupation: Masters Student
Location: Long Island, NY
Nationality/Country of Origin: Punjabi, India
Preferred language: English
Who do you care for currently? Grandmother (maternal),Grandmother (paternal)
Who did you care for during COVID-19? Grandmother(maternal), Grandmother(paternal), Mother, Father, and Aunt
How long have you been a caregiver? around 6 years
How did you become a caretaker for multiple people in your family and what health issues did they have? (March 31st-June 1st)
Since I was born, my grandparents (paternal) have always lived with my family and me. Around 6 years ago, my grandparents both needed 24/7 care upon the diagnosis of my grandpa's Parkinson's Disease and my grandma's stroke (My grandfather passed away 2 years ago).
My maternal grandmother (Naani) rotates from house to house between my mom and her two sisters (both sisters live in India). My Naani also needs 24-hour care due to her old age and health issues. Currently, she resides with my family and me and has been living with us for almost 2 years (she normally doesn't stay at one house for longer than 6 months.) due to COVID-19 travel restrictions.
When the pandemic hit New York all medical aids that would assist my grandma (paternal) via in-home care stopped coming. Around then, my brother returned home from his Long Island City apartment given how badly the effects of the pandemic on NYC were. Additionally, my aunt, who also lives in NYC came to live with my family and me in order to take care of my grandma until the aids returned. In total, there were 7 people in my house including my grandmas, my parents, my aunt, and my brother.
Both my parents and aunt became severely sick due to COVID-19 (luckily both grandmas were asymptomatic). My brother primarily took care of my parents while I took care of both my grandmas and my aunt (we would exchange duties as well). Once my Aunt started to feel better she resumed taking care of my grandma (paternal) however, the side-effects of COVID-19 caused lethargy and weakness, and she would often need assistance.
From the end of May to early June, my grandma (paternal) moved to my other aunt's house not too far from where we live now. The move was made because my parents and my brother and I were unable to take care of both my grandmas full time especially since my parents were still very weak from their COVID-19 illness. Additionally, the aids were not allowed to return to our house until all of us tested negative for COVID-19.
My grandma (paternal) suffered from a stroke around 6 years ago causing paralysis on one side of her body. Given her limited mobility, she needs assistance from activities like walking, dressing, showering, eating, etc.
Pre COVID-19 my parents divided the work but the pressure of caregiving inevitably went on my mother even though everyone, including my dad and brother, helped out.
Although we hire aids to assist my grandma, most of the aids do not meet the expectations of a proper in-home caregiver, given most lack formal medical training.
Additionally, addressing the needs of my other grandmother (maternal) is equally as challenging Given her various health issues, there’s a limit to how well she can take care of herself.
In March when the medical aids officially stopped coming to our house, my mother had to not only take care of her mom but my dad’s mother as well, all while maintaining a full-time job.
Was it more responsibility to be a caregiver because of COVID?
Yes, once my parents got COVID-19, my brother and I had to take care of them and my grandmothers, and my aunt.
My grandma's (maternal) primary caregiver was my mom, so when she wasn’t available to take care of her, my grandmother reacted negatively. She became increasingly irritable, paranoid and some of her underlying health conditions became more severe. During March-April I had to help bathe my grandmother, cook for my grandmother, help her get dressed, and assist her in various other basic activities she was able to do herself prior to COVID. I recall times where I had to wake up in the middle of the night multiple times, due to her paranoia attacks. Essentially, taking care of my grandmother became a full-time job.
At this point, our house was a hospital. My brother and I were not used to taking care of people like this, let alone three COVID-19 patients and two handicapped senior citizens.
I took about 2 weeks off work just to make sure everyone in the house was safe and taken care of. However, my parent’s COVID-19 symptoms were so severe, it took them around 2 months to get better.
This was a very traumatic time for my brother and me, however, nonetheless an experience we will never forget.
Do you have previous experience as a caregiver?
My parents and my brother and I became caregivers when my grandmother (paternal) suffered from her stroke. But again as mentioned before, Inevitably, the duty of a caregiver landed on my mom (She’s also a full-time microbiology professor at Queens Borough Community College)
Although hiring the aids did alleviate some of the burdens, we were not allowed to leave my grandma alone with the aid.
How did your life change during this experience? Did it leave an impact on you?
I think I truly learned what it means to be selfless.
I’m beginning to understand the true definition of selfless service ("Seva" – a core tenant of Sikhism), and I'm experiencing what it truly means to be there for your family.
Raised in a well-off household in a relatively affluent community on Long Island, I didn't really face many
hardships in my life, but I also didn't know what was in store for me ahead. COVID-19 was a big slap in the face, to say the least. I (along with my brother) used the skills my parents learned over the past couple of years to help my parents and the rest of my family suffering from COVID-19.
How do you feel about yourself after this experience?
I feel proud that I stepped up to the plate, did my best, and received a positive outcome. But relieved it’s over.
Do you think when you get older you would want someone to do the same for you?
No, I know firsthand the burden of being a caregiver. Aids and family can help but it’s different for the people who live in the same house as the patient. I can recall countless times where my grandma (paternal) would ask my mom or me to do things instead of the aid, whose sole purpose is to help my grandma. I personally would not want my kids to feel this burden of responsibility. This type of burden is debilitating and can cause a strain on families.
Are there any other resources or other support that would have been helpful?
If families could split the work it would reduce the strain on one family or person. Many times, parents stay with sons so the work of a caretaker inevitably goes on the daughter in law. Even though my grandma (paternal) treats my mom like her own daughter, it’s a lot of pressure to put on one person.
Both my aunts on my dad's side help but only when we are not available. However, it’s important to note my grandma (paternal) is now living with one of my aunts and is no longer staying at our house. So we must also take our own advice and help out my aunt and her family and split the duties.
If my grandparents lived in India, they would have more in-home care, such as cooking and cleaning, which are all of the things that my grandma (maternal) needs right now. But as far as medical attention, she would not receive adequate care in India. In-home care services need to be improved.