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Practical Insights for Busy Caregivers

“What choice do we have?”: family caregivers’ lives upended


January 28, 2019, by

In an article posted on Stat, pulmonary and critical care doctor, Daniela Lamas, recalls a meeting she had with the parents of Nohely, a nearly 30 year-old woman with cerebral palsy and learning disabilities. Nohely had a good life until a serious bout of pneumonia landed her in the hospital for six months and left her permanently connected to a ventilator. The meeting was to talk about finally sending her home. 

Lamas remarks: “Our understanding of each other’s worlds is superficial at best. For the hospital staff members, this is one of many meetings on an average Tuesday. But for Nohely’s parents, it is something else entirely. Yes, it is remarkable that their daughter will make it home again and, yes, they are grateful, but their life has been upended.”

Have you had a similar experience, either as a family caregiver or health care provider? Make a comment.

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Why is she not being sent to a long term care facility? Oh that's right the government shut them down. I wonder if the people making the decisions where in this families position would react differently . "ITS ALL ABOUT THE MONEY"
Thanks for your comment, Doug. You raise two issues. First of all, you ask why Nohely isn’t sent to a long-term care facility. I think the article indicates that this would be a very difficult choice for her and her family to make. They might view it as a failure. Families often take pride in looking after their own. And would a long-term care home necessarily have the resources to look after Nohely, given that she’s on a ventilator? It seems to me that the family needs some case management support, not just looking at what viable options there are out there for Nohely, but also helping them work through the difficult emotions they’re dealing with. Secondly, you mention cuts to long-term care beds. Here, in Ontario, provincial governments (including the current one) have made commitments to increase the number of long-term care beds (not cut them). What some people take issue with is whether those beds are staffed appropriately for the people who are in them.