“What She Would Want” – A Husband and Sons’ Experience with Advance Care Planning

The work I do as an Advance Care Planning Specialist at Vital Decisions became very personal and significantly more impactful during my mother-in-law’s journey with ALS.

ALS, or Amyotrophic Lateral Sclerosis, sometimes referred to as Lou Gehrig’s Disease, is a degenerative and debilitating disease.

This is her story, and also the story of her husband and sons.

Family Dynamics and Initial Challenges

My mother-in-law was diagnosed with ALS in 2017. In the two years following this diagnosis she lost her ability to speak, eat, and move.

She and my father-in-law lived in Florida, while my husband and I live in Pennsylvania, and her other son lives in Connecticut. Due to this distance, my father-in-law was her main caretaker. This role was challenging for him with the progression of her disease because of his age.

He got her to all of her medical and salon appointments. He did his best to keep up with her changing medications and medical treatments. He attempted to convey the information from her medical team to my husband and his brother over phone calls, but information was forgotten, or there was confusion about the information. My father-in-law had language barrier issues with the home health aide, whom my mother-in-law liked. He had to learn how to care for her when she got a feeding tube.

It soon became clear to my husband and his brother that their father was struggling to keep up with all of the demands of her illness; there was no other family nearby.

My husband and his brother took turns flying to Florida monthly to visit their parents, accompany them to their mother’s medical appointments, and to confer with their father and the medical team about the next best steps for care.

Becoming More Comfortable with Difficult Conversations

Because of my own familiarity with Advance Care Planning conversations, I was able to start conversations with my husband and create a little more ease in talking about his mother’s care.

We started by asking about his mother’s values, and how he believed she would make medical decisions. We discussed possible future medical decisions she would have to make, and what her preferences would be.

My husband, in turn, was able to have these discussions with his father and brother, to ensure they were making medical decisions she would have made for herself, since she had lost the ability to speak.

At times, my family wasn’t certain what her medical wishes would be, which created some anxiety about what decisions they should make. This seems to be true of so many people I speak with who haven’t thought of Advance Care Planning prior to a medical crisis.

Making the Ultimate Decisions

My conversations about Advance Care Planning with my husband helped him remind his father and brother that this was their mother’s life, illness journey, and her wishes. My husband reminded them that what she communicated she wanted at each stage was most important, not what she had always chosen in the past, or what the family thought she would want.

My husband and his brother made more frequent trips to their home to support their father in the last stages of her illness. They got the alert when her passing was imminent and got on flights to Florida as soon as they could. She passed before they arrived. They knew they had honored her wishes and her life, and her suffering was over.

Although my family still feels they made the best choices for her care, their story is a testament to the challenges patients and families encounter during serious illness. I feel this first-hand experience has allowed me to deepen conversations with my clients and have a greater understanding of the complexities of what they might be up against.

*Photo by Kelly Sikkema on Unsplash