Living the fullest life is 
different for everyone

Rita Papazian
Norwalk Citizen News


Time magazine describes Kate Atkinson's latest novel, "Life After Life" as a "brilliant novel" that "envisions life as a series of do-overs."

In 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.

I 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.

This 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 learned.

Last 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.

I 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.

Often, 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.

This 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.

Last 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 York Times, "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.

The Times says, according to Michael D. Hurd, 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.

Recently, 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 set in.

Hopefully 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.

Rita Papazian is a freelancer writer who has covered Norwalk extensively.

Copyright 2013 Rita Papazian All rights reserved.