Occupation: Stay-at-Home Mother
Preferred language: Bangla
Who do you care for? Mother, Age 75
How long have you been a caregiver? 3 years
What is your favorite thing about your mother? Her confidence
Can you tell me about your day-to-day responsibilities of taking care of your mother
Since my mother's brain stroke in late 2016, I have been taking care of her. She feels scared to stay alone. My mother can move with a walker, but needs assistance with going to the bathroom. She also uses an oxygen tank, to ease her breathing. This was recommended by a doctor last year, when she was visiting Qatar with my sister. I am in charge of her medication, food, basically her well-being.
How frequent are the doctor's appointments?
We go for regular check-ups to her primary doctor once every three months.
Has your relationship with your mother improved or deteriorated since you have started to take care of her?
My mother is a totally changed person now. Since the stroke, she is disoriented. Suddenly laughs or cries. But we do our best to keep her happy and make sure she is living in comfort.
How do you manage your time between taking care of your mother and your day-to-day activities?
I carry a baby monitor with me at all times because sometimes I can’t hear her call without the monitor. I would say, at night I am more alert. I wake up from time to time and check up on her.
What is the most overwhelming aspect of taking care of your mother?
I can't leave the house whenever I want. I have to make sure someone is at home first, so it takes a bit of pre-planning.
How things would have been different if you were living in your home country?
Back home there's more human resource, at least more available and affordable human resources to help out like nurse or aid. And, definitely relatives would visit. But I have heard that things are changing in Dhaka. People are becoming or have become very busy, and rehab centers for the elderly are becoming more common.
Here, there's better medical facilities and treatment. Also, back in Dhaka, at least it's noisy and you can hear things all the time. Here, we live in a suburb, so we feel quite isolated. It's so quiet.
Do you get/have medical assistance to take care of your mother here? Can you tell more about the service?
Oh, we do get an aid from Medicaid. Someone who comes in to help with the bathing, etc. But it hasn’t been successful. The timing does not work out and it’s not easy to get one for our area for the hours we want. Plus, there is language and culture barrier. For instance, once, a Russian aid was sent to our home. She didn’t even speak English. Even I had difficulty communicating with her, let alone my mother.
Then I chose to put an ad on the Bengali newspaper, and privately hire a full-time nurse. It's expensive, averaging at $25/30 an hour. I have had three people come in, but it didn't work out. They seem to be more emotional than professional. All of them were Bengali. Since the stroke, my mother developed a bit of a temper. So sometimes she says things, and the aids did not take it so well. They just did not understand my mother's condition.
I have also looked to hire on care.com. Once, I hired an American. She was quite old, probably almost 70 years old herself. But she smoked, I could smell it on her. My mother is already using an oxygen tank, I did not want the smell of cigarettes around her.
I am still looking.
Do you get support or help from your relatives/neighbors/other family members? Is it easy to ask for help?
I am my mother's primary caregiver. But my husband and daughter help a lot everyday. And Bengali friends in the community help too. We have been living in this area for three years now. With my neighbors, my relationship is still very much on hi/hello basis.
Did you consider a nursing home?
There was a time when my father was admitted in rehab center for the elderly in Jackson Heights. This decision was made by my sister at the time when my father was staying with her in New York. When I visited him, it was heartbreaking to see him restrained. They restrained him to restrict his movement. This took a toll on my father. See our parents aren't used to the idea of old homes. They are not familiar with this culture. My father passed away after a few months.
In the case of my mother, she was temporarily admitted to a rehab center because her doctor suggested it when she was taken to the hospital. We took her there because the paperwork for an oxygen tank with Medicaid did not come through at the time.
She fell down from her bed twice in two weeks time. And then I found a pill in my mother's fist when I went to visit her in the morning. The nurses came up with many excuses like my mother must have spat it out after the nurse left the room. But my question is, how could this happen?
They are short-staffed. But that was unacceptable. And since then, nursing home is no longer an option.
Do you expect your children to take care of you in your old age?
I am mentally prepared to live in a nursing home in old age. I do not want my children to bear the responsibility.
Do you think we talk enough about the challenges of being caregivers in this day and age?
We do talk about it among her friends, our experience of being caregivers. But I think it's not possible to get genuine help, which I understand, everyone is busy with their own lives.
What kind of additional resources do you think can help you take care of your mother?
The aids/nurses provided by Medicaid should be culturally similar to the patient. This is important. I always ask Medicaid for Indian/Bangladeshi professionals. It is never the case even though I have officially put in requests.
I am sorry, I have to go now, Amma is calling for me.