Sandra Gaffney entered her first nursing home for long-term care at
the unusually young age of fifty. Fourteen years earlier she had
been diagnosed with amyotrophic lateral sclerosis (ALS), also known
as Lou Gehrig's disease. Over the next sixteen years, Gaffney lived
in nursing homes in Florida, Virginia, and Minnesota, as the ways
she could be close to family changed.
She describes her situation in these words: "As a nursing home
resident, I require total or maximum care. I have limited use of my
hands and arms. With special splints, I am able to turn the pages
of my books, use the telephone and TV/VCR/FM radio remote control.
When my cup is positioned properly, I can drink independently. I am
able to walk with a platform walker and the help of two nursing
assistants. My walking is not functional; it is only for exercise.
After I moved into my third nursing home, I learned to operate a
power wheelchair by using an adaptive switch between my knees. ...
All other areas of physical care have to be done for me. My speech
is impaired. If people listen carefully, they can understand what I
am saying. ... I am able to eat regular food and breathe on my
own."
Gaffney became an acute observer and strategist about how to
live in a nursing home. Her first-person account, dictated to
family members and assistants, covers making the decision to enter
a nursing home, choosing the right one, and understanding its
culture. She talks about how to furnish your room and about all the
issues that arise in a resident's typical day. She has much to say
about communication with staff and family about "how to help others
help me." Gaffney's daughters, Amy and Bridget, and her friend
Ellen Potter provide additional perspectives on the caregiving
experience.
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