Isolation is a precursor to extinction. Perhaps, to most of us, the word extinction is benign, in that it historically has applied to dinosaurs, woolly mammoths and other creatures that we've never seen. While many of us lovingly concern ourselves with the real importance of preserving certain animals, wildlife, etc... we blindly accept and participate in a well-ingrained, social system of Human Isolationism which encourages, and too frequently dictates, the extinction of millions of our brothers and sisters.

Caregiving is an act of love as old as life itself. Since the dawn of humanity, wife has cared for her husband, mother has cared for her children, and daughter has cared for her parents. Although today, husbands, fathers, and sons are lovingly taking some of these responsibilities, the role of Caregiving is still, most often, assumed by the woman in the family. This is a role that we choose, most of us without hesitation, because we love our families and we want their lives to be as full and peaceful and dignified, as they should be. And, when their lives pass from this one to the next, we want to be with them, in the comfort of home. Until recently, wanting that for our loved ones was an expected desire. Today, however, a terrible thing has happened.

We have insidiously been stripped of our basic right: to love and care for each other at home. The United States prides itself in being the most civilized nation in the world. Yet, she has developed and implemented the barbaric practice of ignoring millions of her citizens who simply insist on loving their families. And worse, this practice of Isolationism is punitive. Not only are families not supported by the system, we are harshly punished for doing what we know is right.This practice is unacceptable. And we, as empowered lovers of the Earth and Her people, must find the means to abolish this anti-human policy or accept our own extinction. We must feel worthy of life.

Alzheimer's Disease killed my grandmother (GaSara). And, it almost killed me. She was one of over 100,000 beautiful people who died with Alzheimer's in 1994. I am one of the 100,000 Caregivers, for those persons, who must now rebuild a life for myself. I consider myself a Caregiver in Recovery because, even a year after GaSara's escape, my healing has still only begun. An important part of my recovery, which in many ways began years before GaSara's physical death, has been coping with my anger. Learning how to turn my anger into action has developed into a passion for me and has been empowering in my process to heal. I encourage all Caregivers to allow this passion to develop within yourselves.

My experience is with Alzheimer's Disease and, accordingly, I write from that experience. Alzheimer's, alone, afflicts four million Americans and is the fourth leading cause of adult death. Millions more of our people are afflicted with related dementias, due to stroke damage, AIDS, Parkinson's Disease, and other illnesses. And, millions more are physically or cognitively dependent on others to care for them. For these millions who suffer with debilitating illnesses, there are millions of Caregivers selflessly giving up their own lives, tortured by the ceaseless decline of their loved ones and, forced into a deeply painful place of isolation and despair. And most of us, at some point, reluctantly accept that we are alone. You are the very special people to whom this column wishes to speak. Despite what the system tells you, You are not alone.

Alzheimer's Disease is a particularly horrifying illness. It always leads to death. We don't know what causes it and there is no cure. Unless we find a cure, or a means of preventing it, 14 million Americans are expected to develop the disease by 2050. Medical science, in all its wisdom, has spent this century working on ways for us to live longer, without any real thoughtplaced in what the quality of our longer lives might be. Our Older people, the most precious wells of wisdom from which we have been given to drink, seem to have become disposable to many in this society.

Our own Baby Boomer generation is, unfortunately, responsible for a bulk of that travesty in thinking. Alzheimer's affects a lot of older people, no doubt. Almost half of all persons over 85 years old are getting the disease. However, few are aware that the youngest person diagnosed with Alzheimer's is 26 years old. Personally, I have met six victims younger than 50. Currently, the most growing population of persons afflicted with Alzheimer's is the 40 to 50 age group. This is not just an old person's disease!

Alzheimer's affects each of its victims randomly. A person with Alzheimer's can live fromthree to 20, or more, years from the onset of symptoms. Throughout that time, the disease only gets worse, never better. The disease costs society more than $90 billion a year. The aforementioned Policy of Isolationism assures that neither Medicare nor private health insurance covers the type of care these patients need. So, families of these patients are left alone to cover the costs. The vast majority of us are financially devastated before our loved ones die. Then, we are forced to institutionalize our loved ones - the last thing any of us want - because that is the only means with which the System provides us any financial assistance. It's insane. It's unacceptable. Yet, it is our plight.

The disease of Alzheimer's is extraordinary. It destroys its victims' memory, stealing their ability to communicate and, rendering them completely dependent on others to live, essentially, for them. And the Caregiver, charged with the responsibility to live or her loved one, almost always loses the ability to live for herself. This is a destructive double tragedy. We can do nothing to stop Alzheimer's Disease today. However, there are no limits on what we can do to help ourselves and other Caregivers survive and heal from this experience. There need not be two victims for every diagnosis. And, be that diagnosis Alzheimer's or any other life-destroying illness, too many Caregivers are being lost in the aftermath.

My journey with GaSara began when I was two years old and she became my Caregiver. Growing up with her, she taught me to be independent, strong and honest. She (with the help of a Henry Drummond book) did her best to instill in me "Patience, Kindness, Generosity, Humility, Courtesy, Unselfishness, Good Temper and Sincerety," as a way to understand Love. GaSara was never very affectionate. She was a hard and somewhat bitter woman. Yet, she loved me very much. I took her lessons to heart and will be forever grateful for her teachings.

My journey with GaSara and Alzheimer's Disease began when I was 27 years old and I became her Caregiver. My experiences as a Caregiver have taught me many things. Only my Higher Power knows how many lessons I have yet to learn. I have learned a lot about myself. I have learned the empowerment that can be felt in accepting that some things cannot be changed, no matter how hard we pray for the change. And, by embracing that empowerment, I have learned that I can impact changes that can affect the world. A few years ago It occurred to me, "Because I exist, Others exist like me." The gift in that thought has kept me from being lonely, at so many times when I have felt completely alone. I use it as a daily affirmation. I am not alone. You are not alone. We have each other.

In 1989, when my life partner, Marjorie, and I first moved back home to care for GaSara, she was still driving her car, playing bridge and going to church every Sunday. Within our first year back together, she could no longer do any of these activities. The isolation had begun. Most of her friends had abandoned her and my opportunity to make new friends was about gone. By the middle of 1990, GaSara began to forget concepts that make the term memory loss seem insignificant. For example, she began to forget how to bathe and dress, how to read and write, how to dial the phone and, more disturbing, how to go to the bathroom. And, it just got worse and worse.

A year later, GaSara was completely dependent on me to take care of all of her needs. The unyielding pace at which this disease travels to destroy a life is astounding. By the Summer of 1992, GaSara was completely incontinent, unable to bathe, dress, read or write to speak of, and her ability to verbally communicate was becoming more and more impaired. She was beginning to forget how to chew and swallow. And, she had become very agitated, as a rule, and difficult to calm. I eventually agreed to try a drug to calm her. It took a heavier toll on her than I could bear, so I chose to cope with her behavior. Physically, she was very strong. And, like most Alzheimer's patients, she wandered incessantly. I think, looking for a way out of her hell. "Will you help me?" "Pleeeease, will you help me?" she would beg, every day, for months and years to come. I knew what she wanted. She wanted me to give her her memory back. Despite giving so much to her, day in and day out, I could never give her what she wanted. At the time, I thought I was failing her.

The Isolation was taking its toll on me.

By the Fall of 1992, I was near death myself. Although it may seem extreme, I know now that I was dying. Physically, emotionally, mentally and spiritually, I was dying. I had gained almost 40 pounds. Dutifully bathing and dressing GaSara each day, I would go days without a bath or changing my own clothes. Nobody ever saw me! Nobody knew me at the grocery! What did it matter anyway? I was fat and ugly. I hated myself. I was a failure.

I couldn't concentrate enough to read the newspaper or write a letter. I was stupid. When Marjorie would try to comfort or motivate me, I was convinced she was only criticizing and would lash out at her. I was exhausted, spending days at a time awake with GaSara -- so loyal to GaSara, without any thought of my own needs. They didn't matter. I didn't matter. I was scum. Hindsight clearly indicates I was severely depressed. I was completely isolated from the outside world and any sanity! Yet, all I could see then, was that I was worthless. And I was all that GaSara had.

GaSara was all that I had. And I was completely miserable. Overwhelmed with grief and guilt and self-loathing, the only thing I was living for was GaSara. I could not see the really loving and compassionate care I was giving her. But I felt it, as constantly as my heart's beat. The time she shit (sic): from her bedroom, all the way down the long wood hallway floor, clear down to the kitchen, then plopped her nasty Depends right up on the breakfast room table; I really did not believe that it was perfectly Human for me to get upset about it. I did worse.

Convinced I was scum, I hated myself. Then, and every time I lost my cool. And I lost my cool many times. I'm still not proud of that. I still hate to loose my cool... . However, today I don't blame myself for it anymore. I took good care of GaSara. I know that now. But, back then, I knew nothing about myself. I may as well have been a shell. I was empty. All of my focus and energies were on GaSara. As she died, I was dying with her. The isolation was killing me. I needed help.

By the Grace of the Heavens and the love of a Good Woman, Marjorie got me help. She booked me for an Alzheimer's Association Caregiver conference in Albany, GA. Marjorie took a day off work to sit for GaSara, literally helped me dress (I had not dressed for the public in two years), and walked me to the car, the morning of the conference. Marjorie and I always believed that God meant for us to be together, for many reasons. I trust that this experience was one them. I am eternally grateful for that. She saved my life that day. And what a day it was...

"I'm not alone!" "I'm not alone!" "I'm not alone!" That's all I could think of on the way home that day! That gift I got in Albany. I couldn't believe it! They were all over the place... 200 of them! There was the 87 year old lady whose husband had Alzheimer's and Parkinson's, and the young Baptist preacher whose Mama had dementia but he couldn't find a doctor who wanted to find out why. And when, during the forum, I nervously raised my hand and asked if anyone else had observed obsessive/compulsive behaviors,and more than 100 hands raised amidst a small roar of knowing laughter, I knew I was not alone. I was stunned. I felt sane again. As I met dozens of other Caregivers, who were going through the same insane existence, I no longer felt stupid. I felt smart. That Baptist minister even flirted with me. 'Made me feel kinda' pretty! I did not feel the isolation.

For the first time in two years, I had an identity and people around me understood where it was coming from. Through that window, I saw myself again. And I decided to live. That's the day I learned that Because I exist, Others exist like me. And from that, I began turning my anger into action. We are not alone!

After that one lovely day, I took new pride in being a Caregiver and became a passionate dementia Caregiver advocate. All the while, I continued to take good care of GaSara, at home, until every penny of our money was gone and, then, in a nursing home until she died, in May of 1994. When this incredible woman, whom I loved, for a time, literally more than life itself and did anything for, finally left this life, she was emaciated. She weighed 57 pounds, had not been able to chew and swallow for two years, had been in a fetal position for weeks and rarely was able to speak. But she knew me. When she did remember a name, it was mine. And just a few nights before she left that place, we sang a part of Jesus Loves Me together. Alzheimer's Disease robs its victims of their memory, but it cannot take their souls. It never took GaSara's.

She died of kidney failure, due to malnutrition. That's the leading cause of death for people with Alzheimer's Disease. That's a horrible thing: to watch your loved one starve to death, knowing you're the one responsible for feeding her. What is far worse is the fact that millions of our brothers and sisters are living this horror, with little to no support from a society that encourages isolation for its people.

For any of us to heal, we must believe we deserve to heal. Caregiving, for loved ones who are dying, by its nature, requires that we give more than is humanly possible, and we evolve into this selfless, seemingly super-human being. All the while, emptying our souls and hearts and minds into our loved ones, with a grand delusion that we can somehow replace what they are losing, never realizing that that which we give away is not being replaced in ourselves. That is a terrible loss. None of us will ever succeed in being perfect Caregivers, but, without help, we will kill ourselves trying. And that's our right, as human beings: to give our loved ones the care they deserve at home. Despite the System that ignores that right, we must trust that we do not deserve to die. When our job is finished, we deserve to heal.

My healing began the day I knew I was not alone. My writing and advocacy work has given me many other reasons to live, but the healing process, initially, was hampered by the ever increasing demands of my role as Caregiver. My healing truly began when GaSara died. That was when I realized that she could no longer be my focus. I was left with myself. It was either sink or swim. It's still scary, but I have chosen to swim. Often, it's more of a dog paddle! But, I am passionate about reaching the shore. Because, I know that I am not alone and, at the shore, many kindred spirits await me. That is a very pleasant thought.

Alzheimer's Disease and AIDS will be credited for the extinction of millions of human beings in this next century. Until we find cures, we may be unable to change that. Isolation will continue to be a precursor to extinction. However, socially systematic isolation of families must come to an end, before Mother Earth can truly begin to heal and the extinction of her most loving creatures is abolished. We, the Caregivers from Martyrdom Hell of the Past, are the very ones chosen to lead in that abolition. It is incredibly empowering to accept that I am not alone. I know you are there. I know that you are angry. And I want you to get active.

This column is for Caregivers. The statistics say that one in three of you knows from whence I speak. I want to hear from you. I want to know about your healing. Your experiences are yours, but relevant to millions. They are important because, we caring people of the Earth must realize we are not alone. When we share, we consciously resist isolation and abolish our own extinction. Then we heal.

I want you to know that you are not alone. I want you to know that Because You exist, Others exist like You. I want you to know that you are doing the very best you can do and it may never be enough, and that's OK. I want you to know that the love you give is extraordinary and you deserve to heal. I want you to seek out like-minded people. We're out here. And I want you to share with me the empowerment in knowing that, together, we can heal the world. After all, by the Grace of our Higher Power, we are Caregivers!

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