By Nellie Kidd-Madison

John was a dirt farmer from eastern Oregon when I married him fifty years ago. He loved making things grow and just enjoyed the little things in nature such as the early morning quietness here on our Oregon Trail ranch where he was born. We raised our four children to appreciate a hard day's work and we felt that it was the best thing that we could give them for their future. We all worked hard but we never missed an athletic event or anything else that they were involved in; we just worked longer on the other days of the week. We were a typical farm family lucky enough to raise children with the simple things of life to enjoy. They grew up and gave us nine wonderful grandchildren to enjoy as they progressed through school. Life was great here on the farm as two of our sons joined us with their families to help to till the soil and tend the cattle.

Then, at age 53, John began to change! He grew discontented and angry. The next year John was very passive with no interest or desire to function in daily activities. At this time his short-term memory was very lacking. It was hard to convince both him and two doctors that he had a problem. The M.R.I. immediately showed extensive brain shrinkage and the diagnosis of early on-set Alzheimer's disease was given the same day. It was like a death sentence as I knew the prognosis but, thankfully, John never did. We began to" live each day" just as they say.

As the disease progressed John digressed backwards through life. He became a young man, a teenager, a young child, and then finally about eighteen months of age. Pneumonia ended his life this spring at age 69. He was in a wheelchair the last week and in bed the last two days. He died here at home after loosing weight all spring. My big dread for many years was the long, fetal, bedridden years that sometimes lie ahead for an Alzheimer's patient, as they become babies again. This fear never came about and maybe I have learned that one shouldn't borrow trouble.

My goal was to keep John mobile and active. I encouraged him to walk daily so that he could take a nap in bed as a child would and then walk some more so that he would be ready to sleep all night. This seemed to be successful as he was very healthy physically. I believe this physical activity helped him maintain good blood circulation, which in turn, helped keep him active. I had always heard that when an Alzheimer's patient gets into a wheelchair, they never get out. We luckily never got to that point.

As the sixteen years slipped by, I learned to never take anything for granted. I learned how to solve various problems as they occurred. John soon became incontinent and that was always my biggest chore and largest expense. I soon learned the best adult diapers available, how to protect a mattress, and how to keep an adult's bowels moving.

The second largest problem to solve was his wandering. Yes, I wanted him to keep moving but I also wanted to know where he was all the time. He would step in front of a truck if I wasn't holding onto his hand. John had lost all sense of fear and now had lost all common sense along with it. I was becoming his mother and I am sure that is how he came to think of me. This was definitely true the last few years as I used to have to herd him and he later would just hold onto my hand and let me guide him as a child does.

I would have him hold my purse or coat while in a movie or at an appointment to help keep him sitting as that would then become his responsibility, to take care of something for me. Covering a doorknob with a towel or jacket made him forget that a door to the outside was even there and he would just walk around inside the house. I let John walk outside on nice days and I could keep him close by because I had him walk in his socks and the gravel would slow him down and he soon learned to stay on the cement and deck area.

John could still feed himself and that helped me a lot. I would give him only a medium sized spoon to help him scoop up the food that I had cut into smaller pieces. He seemed to be afraid of hot liquids and so I put crackers in his soup to both cool it down and to make it easier to scoop up. I never gave him caffeine as I learned that they kept him awake at night. He would just lie there and stare at the ceiling and not get his rest.

As the years passed and I solved more and more problems, my friends said that I needed to share my story with other caregivers. I never wanted to write a diary, let alone a book, but I decided that my friends were right. I had read everything available, especially at diagnosis, but could find nothing of a one-on-one, problem solving or self-help book so I wrote "Living With John - Caring For A Loved One With Alzheimer's Disease." It has a story to tell to help others and the response that I have gotten has been very rewarding. People are reading it as if it were a novel and passing it down through twenty members of their family. I am touched by their interest. I sincerely hope my experiences will help other caregivers and loved ones of Alzheimer's patients solve some of the problems they face.

Living With John ISBN 1587410613, sold through bookstores everywhere or available directly from Selfhelpbooks.com. Copyright 2002, Nellie Kidd-Madison and Selfhelpbooks.com, all rights reserved. This article may be reprinted but must include authors copyright and website hyperlinks.