Family dynamics are the invisible force behind every caregiving journey

Caregiving from a distance: Maria’s story

What is long distance caregiving?

When I first approached Maria to do an interview on long distance caregiving, she looked puzzled and then refused. Wanting to e respectful of her privacy, I didn’t press the matter, although I was surprised at her response. She paused for a moment, sensing that I wanted to know why she denied my interview request about long distance caregiving, and then she explained, “I’m not a caregiver. You should ask someone who does this for a living.”

It was then that I understood her hesitation.

Like a lot of caregivers who are caring from afar, Maria suffered from long distance caregivers guilt and didn’t see herself in that role of distance caregiving, especially since, living in Canada, she was half a world away from her two sisters and her mother Patricia, who lived in the Philippines. In Maria’s mind, her sister Leticia was the primary caregiver since Leticia had sacrificed having a family and career in order to take care of their mother full-time. Anything she did to support her sisters’ caregiving efforts was just part of what it meant to be a good sister and good daughter.

When I asked Maria if she was involved in her mother’s care, she told me more about her role. Maria wasn’t the oldest child in the family, but she made all of the major decisions regarding their mother’s health care. Although she lived in Canada, Maria was the person her siblings looked to every time their mother had a medical issue and had to see the doctor, with Leticia accompanying her.

The doctor would explain to Leticia what was going on with her mother and Leticia would relay the information back to Maria, almost as soon as she got home. Together, Maria and Leticia would discuss Patricia’s symptoms, the doctor’s feedback, and the steps they would need to take going forward to make sure their mother made a full recovery.

After hearing this, it seemed clear to me that Maria was very much involved in the care of her mother, and that she would be considered a long distance caregiver, even though she didn’t provide any hands-on care. Maria still looked skeptical. Maria grew up in the Philippines and moved to Canada with her husband and daughter in 1988. Her mother and two sisters moved into Maria’s old house in the Philippines, and Maria and their brother David, who lived in the United States, supported their mother and sisters by sending money home each month. Their financial support allowed Maria’s sister, Leticia, to budget the household expenses, pay medical bills, and put a little money aside as savings.

Maria visited the Philippines in 2002, ten years after her first visit since immigrating to Canada.

“Ten years was too long to be away. I wasn’t prepared for how old my mom looked,” she said. “Of course I knew she had aged but I wasn’t emotionally prepared for how it would affect me to see my mom looking very much like a senior citizen.” In 2008, Patricia’s health started to decline rapidly and she had to be confined to the hospital when she started experiencing vision problems, dizzy spells, and mental lapses.

Patricia’s doctor said that she had suffered a stroke, and an MRI revealed that Patricia had a large mass in her brain, which was inoperable given her age and the delicate state of her health. Maria called the hospital and spoke to her mother, who suggested that Maria come home as soon as possible.

Knowing that the end was near for her mother, Maria and her family made arrangements to fly home to the Philippines. Upon arrival, they went straight to the hospital where Maria and her daughter stayed with Patricia in her room for two weeks until Patricia passed away.

After Maria and her siblings settled the hospital bills, funeral arrangements had to be made. Rather than having the visitation at a funeral home, as her siblings suggested, Maria decided to bring their mom home one last time. Family members from all over the world flew back to the Philippines where they stayed in the same two-bedroom bungalow that the visitation was being held, right in the living room. Even though it’s been eight years since her mom passed away, Maria is still carrying on the responsibilities of long distance caregiving.

Maria and her sister Leticia now help their sister Christine manage her diabetes by making sure Christine is following her doctor’s advice regarding her diet and prescriptions. Maria knows that this responsibility for long distance caregiving of her sister is one that she will have to shoulder for years to  ome. Maria has also been trying to help her sisters to find their footing after 20 years of taking care of their mother Patricia, who they are still grieving today.

At the end of our conversation, after speaking to Maria about all that she has done in taking care of her family as a long distance caregiver, I wondered if she changed her perspective on what a “caregiver” really is.

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