Alzheimer’S Through Tears and Laughter: Diary of a Caregiver

By Edwina Marino

Today, there is a disease afflicting many people and arousing fear in those whose ages can start as young as forty years, and moving on through the sixties, seventy and eighty year old groups. It is known as Alzheimers Disease.
This book is about sharing this experience with my sister-in-law who came down with this disease in her later years. She was eighty-four at the time and lived to be ninety four years old.
I was encouraged to take notes and write about this by a doctor who told me I would be in a position to see its development every day for as long as she remained with me. He said, Take lots of notes. You will be able to observe so much more than I, because I dont spend that much time with a patient, and you will be with her day and night and observe the changes as they happen and what triggers her behavior. Good Luck! With that I started out on my ten year trip through the ups and downs, the good days and bad days of Alzheimers disease.
Our days were laced with pain and humor, but I was determined to see it through, laughing a little and crying a lot, hoping the scenery would change, but finally surrendering to this fate that had come upon us. Our mantra became Lets laugh because if we dont we shall most certainly cry!
I chose to care for her because I wanted her to be surrounded by love, music and laughter, in a place where we could laugh with her and cry with her and never be alone. Im glad I did.

• Language: English
• Publisher: AuthorHouse
• Release date: Aug 15, 2013
• ISBN: 9781481778558

Book preview

A sincere thank you to all my friends for their kindness and assistance during the ten years of caring for Lucy. Your caring made a great difference.

Thanks to the Tubbs family for their thoughtfulness in helping me deal with those moments when I was unable to help myself.

To David and Nancy Bamberger who insisted on taking time from their moving day to take me to the hospital the day Lucy came down with pneumonia.

Thanks to Alfie and Ruthie for their tireless support, tenderness, vigilance and loyalty throughout our struggle with this dreaded disease.

Thanks to the Doctors and Nurses, my sister, Mary Catalano among them, who not only assisted me physically, but gave me lessons in nursing as well.

Thanks to the Medical Supplies companies who went the extra mile assisting me in finding the right equipment, diapers, bed clothing throughout our ordeal.

Thanks to Wolfe’s market for the plastic bags and delivering my groceries when I could not go to the market myself.

I’ll never forget your kindness!

INTRODUCTION

The disease we refer to as Alzheimer’s disease may have been here long before we became sufficiently aware of it, in order for someone to take an interest in studying its symptoms. Long before that study, there had been many elderly people who became forgetful and their behavior, so erratic they were often regarded as insane. Those who had families were cared for at home because, in those early years, women did not work outside their home and could provide the care needed. Those who had no one to care for them were placed in an institution often referred to as the Crazy House.

Most of these people were elderly, and I recall the conversations at home about becoming elderly and the possibility of ending up in an institution when they arrived at Old Age. Comments like Don’t pay attention to Grandma, she doesn’t know what she’s saying, were common.

It wasn’t until Dr. Alois Alzheimer began a study in the early 1900’s, that the illness was recognized as an illness to be dealt with by the medical profession, and known to the general public. It was then, that desperate families who had been floundering in their caring for their loved ones, found some reprieve

In the late 1950’s it became subject to many discussions by everyone, and we started to hear more about Alzheimer’s disease. At first, it was treated as a laughing matter by the general public, and it was not unusual to hear someone asking the question, What’s the matter with you?, or Do you have Alzies? whenever someone had a forgetful moment. No one knew it would become the worst threat to our health, and certainly not, a laughing matter.

Today, we shrink from the thought that we can become an Alzheimer patient, as the number of patients continue to grow. It is, in fact, a very frightening possibility because we do not know what causes it, and worse, no medication has been developed for its cure. The dictionary tells us dementia is a condition of deteriorated mentality often with emotional apathy, and does describe the Alzheimer patient. I learned there are other dementias as well, but none are as frightening nor as debilitating as Alzheimer’s. With Alzheimer’s disease the ability to think clearly and in the present, disappears.

Memories of the past, sometimes happy and sometimes very painful, surface, causing the patient to become frightened or to break out in laughter. Their ability to remember is not so much lost as it is scrambled and very confusing.

What makes Alzheimer’s so frightening is that not only is the memory gone, but the brain loses connection with the vital organs which brings about the deterioration of the body.

The changes that ensue, come one at a time and last anywhere between eight and ten years. The disease attacks the body in phases. It usually begins with the Incontinence of urine, followed by Incontinence of bowel.

As the patient worsens, diet becomes a major problem because their inability to recognize a fork or spoon or food makes it difficult to feed them, and they must be watched carefully. At times they will lower their head to the plate and lick the food or they forget how to eat. At other times they remember. For the care-giver it becomes a guessing game.

It does not happen as neatly as I have written this. At times they know and recognize their food and at others they do not, or they have forgotten how to eat and they lower their heads into the food to lick it off the plate.

The care-giver can only observe and be ready to correct or clean up after the patient. This can occur at any time.

Then suddenly from somewhere there comes a sudden remembrance, then, just as suddenly it’s gone again.

It’s reminiscent of a short in the electricity. Like static- it stops and starts,- leaving you wondering what is going on. Somehow, from somewhere, a snatch of memory comes back and all is well again, then retreats to wherever it came from.

Unlike other diseases, Alzheimer’s is a very slow disease. Unless there is some other illness accompanying it, it will probably last anywhere from eight to ten years. This disease will not affect all patients the same way. Much will depend on what their life experience has been and the type of person they have been

It has been my desire to share my experience as a Caregiver to my sister-in-law with all who might be interested enough to learn what to expect if a loved one has come down with it.

I’ll just say it is not difficult if you don’t make it difficult. It is the patient who is helpless.

There are other dementias as well, but none are as frightening nor as debilitating as Alzheimer’s, and since it does not affect everyone in quite the same way, It is very confusing and difficult to understand.

For Lucy and I, Alzheimer’s turned out to be a ten year trip laced with love, comedy, pain, and confusion. Yet, it was also a time of great learning for me and I have come away from it more conscious of the meaning of