Friday, May 13, 2005

I'll Always Remember...

Alzheimer’s is a progressive brain disorder that gradually destroys a person’s memory and ability to learn, reason, make judgments, communicate and carry out daily activities. As Alzheimer’s progresses, individuals may also experience changes in personality and behavior, such as anxiety, suspiciousness or agitation, as well as delusions or hallucinations.

Alzheimer’s is the most common form of dementia, a group of conditions that all gradually destroy brain cells and lead to progressive decline in mental function.

Increasing age is the greatest risk factor for Alzheimer’s. One in 10 individuals over 65 and nearly half of those over 85 are affected. Rare, inherited forms of Alzheimer’s disease can strike individuals as early as their 30s and 40s.

There is no cure for Alzheimer’s disease. Alzheimer's is a fatal disease.
Taken from the web site of the Alzheimer's Association.

Over the past two months my family has been dealing with the direct effects of Alzheimer's on two of our loved ones, and the indirect effects on the rest of us. Last month my wife's father passed away from the disease less than a year after her mother died, her health weakened trying to take care of her husband.

At almost the same time my stepfather's Alzheimer's, along with other health problems, finally required his placement in a nursing home. My mother's mental resources, likely now suffering the early effects of some form of dementia (she is 86), have been further strained by both her attempts to deal with his failing health and her loss of a companion.

There are many myths that surround Alzheimer's; that the stress and strain of dealing with Alzheimer's patients can quickly lead to physical and mental issues for the caregivers is not one of them.

While suffering from the same condition and demonstrating many of the same behaviors over time, my father-in-law and step-father were examples of the different ways the disease can manifest itself in individuals.

My father-in-law seemed to us to slide into the disease with little awareness of what was happening to him. A strong, robust man, he was otherwise generally in good health almost to the end. Like many men of his place and time he seldom shared his "feelings," preferring talking about events and the trials and tribulations he had seen around him. In his last years his stories grew more personal; he would tell the same ones - almost word for word - over and over to anyone who would listen. My wife said that through these stories, many she had never heard before about his youth and war experiences, she came to know him better.

My step-father's health had been in decline for a number of years, osteoporosis and probably asbestosis being the most difficult. But he must have recognized early on that something else was happening to him. He has been fighting his growing memory loss since with every ounce of his strength. Looking back it is evident that he developed coping mechanisms that hid his worsening disease from the rest of us. By disposition orderly and detailed, a professional engineer, my step-father tried to become more so. He used Post-it notes to record his daily activities as if he was conducting a lab experiment. I believe he purposefully steered conversations to things he remembered well - like the day in 1946 when he was discharged from the Army - and away from those he could not - like if he had eaten lunch today. When he thought he was alone he would practice his numbers aloud - telephone number, mailing address, social security number - over and over so he would not forget them. Recently I watched him struggle to answer the doctor when he was asked what year it was. He just slumped when he realized that 2039 was not the right answer. Just a couple of weeks after being placed in the nursing home he asked me to please tell the doctors that he was not crazy.

These men spent their youth in the Great Depression and young adulthood fighting in WW2. Both then worked many years contributing to the material wealth of this country. Both valued their family and community life. They lived long and well. But in their 80's both lost the ability to look after themselves. As they once took care of others, it became our turn to care for them. We all did the best we could given what we knew at the time, but it has been difficult.

Alzheimer's is a terrible enough disease without being made worse by ignorance. It is clear now that - unless a dramatic scientific breakthrough occurs - the huge number of us baby boomers now approaching retirement age will swell the number of Alzheimer's patients. This will stress families and severely stretch the resources of our health system. We owe it to the previous generation - we owe it to ourselves - to learn about this disease, support those in need, and find the resources to develop treatments, cures, and maybe a prevention.

Ask not for whom that damn bell tolls...


Malindi said...

that was written so well, it hurt my heart.

Anonymous said...

That was so well written, I cried.