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Families with Dying Loved Ones at Home Find Solace in Discussion Forum
"My mother wanted to die at home," says Mary Baker of Paso Robles, California. "But we were unprepared for what we were about to face." Baker is sponsoring a proposal in this month's Pepsi Cola "Refresh Everything" grant competition.
Baker is sponsoring a proposal in this month's Pepsi Cola "Refresh Everything" grant competition. She wants to establish an online discussion forum for families who are bringing their loved ones home to die. In order to win the grant from Pepsi, Baker needs to gather enough votes to push her idea into the top 20.
"I couldn't find information and support online," she said. "When it's 2 am and you have no idea how to move someone without hurting them, or your parent refuses medication, what do you do?" she asks. "There are no YouTube videos, no Facebook groups, no discussion sites that I could go to. The caregiving nurses were great, but they only came by once a week. I just want others in the same situation to be able to find help and compassion when they really need it."
Baker hopes that her forum will provide a place where families can share advice and information. "We had a lot of questions that the nurses couldn't answer," she says. "Things like how to deal with family dynamics, organizing caretaking volunteers, and balancing guests with the patient's decreasing energy levels were just a few of the things that we had to deal with, and we had no help."
Baker's vision for the forum encompasses all forms of eleventh hour care. "Sometimes the family can't care for the patient full time, but maybe the patient wants to come home for the holidays, and the family just wants to make them comfortable. Hopefully this forum will help make the experience comfortable for everyone."
Baker would also like to produce a book and a series of short, instructional videos. Over 1 million people use hospice or home care each year. Surveys have shown that 80 percent of terminal cancer patients prefer to die at home.
To vote for the program, which Baker calls "Bring Your Loved One Home" go to: http://www.refresheverything.com/
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