the fullest life is
the novel, the author writes about "narrative fragments that cohere
into a breathtaking whole," Time says. Atkinson's main character
faces challenges in each of her reincarnations and we, the reader, follow
her through her journey anticipating her lessons learned from each life.
must admit that when I first read the novel's title I thought how it
seemed to describe a situation I've been going through in recent years:
watching a family member's life deteriorate from Alzheimer's disease. This
person had lived a very productive life up until four years ago when he
was diagnosed with the disease in his early 70s. He went from a vibrant
individual to one who can no longer talk or voluntarily move his body. He
must be taken out of his bed with a lift and placed in a wheelchair and
then subsequently lifted into a recliner where he spends nine hours until
he is lifted out of the chair and wheeled back into the bedroom and lifted
into his bed.
is his "life after life" and for family members who love him, it
is very difficult to accept this new life. And like Atkinson's main
character, we try to face each challenge and come away with a lesson
week, after four years of homecare administered by home-health aides,
which I managed the past two years, he was placed in a nursing home. The
past year he has had 24-hour care to take care of all his needs. He had
gone through two hospital stays and experienced mini strokes that led to
his inability to stand up. But, he still has a life, limiting as it is.
am amazed how much I have learned to communicate with him just by looking
at his facial expressions. He has always been a funny, witty person and
although he has been unable to speak beyond a couple of words -- and that
is only occasionally -- he communicates with the changes in his facial
expressions and with his eyes. His eyes have told me a lot, especially
when they have become very watery. I don't know what causes him to tear
up; sometimes I have thought that maybe it was his frustration in his
inability to communicate.
he stares at me when situations become too confusing for him, like when
there are too many people in the room, or too much activity going on and
he cannot grasp what's going on. It's as if he is looking for reassurance
or understanding of his environment in a particular moment.
family member is living a "life after life" and it has become
very difficult for the family to adjust to this life. We continually ask
ourselves, "What kind of life is this?" that we are witness to.
week, the New
England Journal of Medicine
released the findings of a study that indicated the cost to care for
Americans with dementia is "at least as high as that of heart disease
or cancer" and will probably go higher. Also, the number of people
with dementia will more than double within 30 years. According to The New
"The RAND results show that nearly 15 percent of people aged 71 or
older, about 3.8 million people have dementia" and by 2040 this
number is expected to jump to 9.1 million people.
says, according to Michael
the lead author and a principal senior research at RAND, the study does
not "capture the full toll of the disease" which is the
emotional cost. That, indeed, is the real human cost felt not only by the
Alzheimer's or dementia patient but by family members.
President Obama announced that his administration is planning a study of
the human brain and to map its activity to understand diseases like
Alzheimer's and Parkinson's. This is welcomed news. As a bystander to
someone who lives with Alzheimer's it is very difficult to understand what
exactly is going on in the individual's brain. During the course of
everyday activities, one forgets the limitations and frustration can well
like with Atkinson's character Ursula, who has to learn many lessons
before she gets it right, we can learn through research how to cope better
with someone living a different kind of life after life. While it won't
provide someone with Alzheimer's another chance at life, it can help us
help them live the rest of their life to the fullest.
Papazian is a freelancer writer who has covered Norwalk extensively.
© Copyright 2013 Rita Papazian All rights reserved.