WHY TELL THE STORY
Was it Alzheimer's or did she suffer from Senile Dementia? The name they called it didn't matter at the time, nor does it matter now for the purposes of this story. From the day I told her that she was going to die--to the morning I found her dead in her bed--this is our story.
This story is about the last three years of my mother's life. Her dementia created that necessary metamorphose, when she became the child and I became the parent. Suddenly, I had to make each and every decision about someone's life and everyone I spoke to wanted to tell me what I should or shouldn't do. The question was, and still is today, "How do you make the last few years of a person's life worth living?"
All I can say is that I did what I truly believed Mom would have wanted at all times, even though it wasn't recommended by the doctors and social workers. I especially ignored the well-meaning advice so freely given by family and friends.
Please keep in mind as you read, that good or bad: this is how I dealt with what happened, with the daily deterioration of condition, and finally with the end of her life. I started with the same doubts and questions that you have, but in my own way, I handled the problems as easily as I could manage and with as much humor and free thinking as possible.
Each victim of this disease follows a course as individual as they are, and yet, many of the symptoms are the same and can usually be expected to appear in each case. The caregiver must not only provide for the health, comfort and safety of the loved one, but must at all times allow for and maintain the well-being of their own self.
This personal insight shaped many decisions I made in Mom's daily care as she traveled the course set by the disease. You, as the caregiver, must not forget that you are in it for the duration, never knowing how much time may be left or how demanding the task may prove to be. It is often a thankless duty performed for someone who can neither show nor express their appreciation or even acknowledge who you are. That in itself becomes trying to the soul.
From the books I read, the people I talked to, and the movies I watched, I was able to reach some understanding as to what might lie ahead; the care I gave came from the health and strength of my own body, the love I found in my heart, and the commitment I made in my mind.
The facts that strictly pertain to my mother and I are true and factual. Some names have been changed and people or events that are unnecessary to the telling of this story have been omitted. The circumstances of my mother's illness and my caregiving are exactly as I have related.
Will you cry as you read----most certainly----will you laugh----absolutely. This is in no way an instructional book, it is our story and we welcome you to journey with us. Perhaps it is a trip you are already taking or contemplating in the future. Do not be afraid, it is a part of life and the natural way of things. Embrace what is new and make it an adventure, the memories you make will remain for the rest of your life. Make them good. Cry with them---laugh with them---and after the "good-byes"---hold on to them.
It is my hope, that with the reading of this story, you might also discover a new and different approach to the care you will be giving to someone you love.