living your best to the end

Long Distance Caregiving at Life’s End

long distance caregiving
Long distance caregiving

When a parent becomes very ill, living far away is stressful.

Growing up in Lebanon, Nada studied and worked in the US, before migrating to Canada – where she set about restarting her career. Always, in the back of her mind, was the need to eventually support her mother – who remained Lebanon with the rest of Nada’s family.

A call from Lebanon changed her priorities:  her mother, twice cancer survivor, was rushed into gastric surgery. With medical bills to pay, Nada, then 6 months pregnant, took the first short-term job contract in Canada – thinking her best help would from a distance.

In Lebanon, her family thought that being at a distance and pregnant – Nada should be protected. Nada mourns this decision:

“I was not consulted. I did not need protecting.“

Nada’s lesson:  Don’t presume to make decisions on someone else’s behalf.

The doctor treating Nada’s mother was a strong advocate of an experimental treatment. It’s not unusual for patients and their families to make an educated decision to proceed with experimental treatments, when proven treatments have been ineffective.

My mother, a college graduate, found the idea suspicious but I insisted. I remember talking to the doctor who downplayed its published side effects. Even when my mother complained, he assured me they were manageable. Being at a distance, I had no way to gauge the reality.

As her mother continued to talk about the pain of stomach cramps Nada researched complementary treatments, but the doctor was emphatic about continuing the experimental treatment. “I feel he played upon my emotions: I certainly felt pressured when he asked me; ‘do you want the tumors to come back?’  His treatment may be good for others, but he should not have masked my mother’s true state, in a hopeless attachment to make the treatment work on my mother. ”

Nada’s resentment:  Don’t let a doctor become an intermediary between your ailing parent and you, or take advantage of communication patterns within your family.

Her mother was getting worse, but refusing to go on skype and only speaking briefly on the phone, so Nada didn’t see or hear her mother’s decline. It was when Nada learned that her mother’s extreme stomach cramps made her fearful of eating that Nada started encouraging her to stop the treatment. She eventually did, but by then, her body had seriously weakened.Nada feels frustration along with the sorrow:

I feel that being at a distance, the doctor manipulated me, and I feel I drove my mother to that state: I know my mother didn’t want to disappoint me.

When the call came, saying her mother had died, Nada – then 7 months pregnant – took the first plane back to Lebanon for the funeral. There, she found the reality different from her long-distance impressions.  Had she known the extent of her mother’s deterioration Nada feels she may have encouraged her mother off the devastating treatment earlier.

If I’d been told the reality, I could have been there, and at least I would’ve been able to see her and soothe her before she died.  Who knows what the outcome might have been. I wish there could have been more honesty and open communication between me – at a distance – and my mother, her doctor and her other caregivers.

Nada’s reflection: while her mother still had the energy to discuss it, they could’ve talked about her degree of trust in various healthcare professionals, the roles she trusted different family members with according to strengths, and her overall wishes and expectations.

Back in Canada, Nada has a ways to go before forgiving herself for being a long-distance care-giver:

“Rightly or wrongly, I feel that being at a distance until it was too late, my mother suffered death by doctor.”

Tips that may help long-distance caregivers from AgingCare.com

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