Dear Carol: My mom, age 81, died recently. What happened was that she’d had a stroke and was rushed to the hospital in time to save her. She was in tough shape, but physical therapy helped some, so we celebrated her success. She told me, though, that she doubted that saving her life was what she’d have wanted, considering the results. She also said that no one can know what will happen, so she accepts this as part of life.
After two weeks at home, she had another stroke and was again hospitalized. Doctors stabilized her, but a day later she had yet another stroke. Since by now she was unresponsive and I was her power of attorney for health care, they asked me what should be done going into the future. I told them no more “saving” her life. I made this decision based on our past conversations about end-of-life care. Two days later, she died. One part of me feels that I did the right thing. The other part is second-guessing my decision. Was I right? I’d just like to feel better about it. — JD.
Dear JD: I’m sorry about your mom. She went through so much before she passed, though as she said, end-of-life is often like that. I’m also sad for you as you struggle with your very human feelings.
I know from personal experience the feeling of helplessness, particularly when we caregivers need to balance what we know or feel that the person may want against the medical emphasis on saving lives. We need to remember that no matter how much people plan, and no matter how fiercely we fight to carry out our loved one’s wishes, much is beyond our control.
One enormous benefit of hospice care for those who are already deemed to have a terminal condition is that these decisions are already made. People who choose this program have already made it clear that they want no more intervention and wish to be allowed a natural death.
However, for someone like your mom, and indeed most older adults, such decisions are more complicated. We can’t foresee every event that could put us in a life-or-death situation such as when a basically healthy older adult like your mom experiences a stroke.
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At this point, there is little room for people to make changes in their health care directions, though if they recover sufficiently from a first stroke, it might be a good time to consider completing a Physician’s Order for Life Sustaining Treatment (POLST) if one isn’t on file.
JD, you used your understanding of your mom’s general wishes, gained by conversations you had over time, as well as the legal documents available to you. You balanced this background with the medical reality that she faced. Rest well knowing that you did all you could for her and celebrate knowing that she is at peace. No one could have done a better job of being a strong advocate.
Carol Bradley Bursack is a veteran caregiver and an established columnist. She is also a blogger, and the author of “Minding Our Elders: Caregivers Share Their Personal Stories.” Bradley Bursack hosts a website supporting caregivers and elders at www.mindingourelders.com. She can be reached through the contact form on her website.