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one piece at a time

I always knew that Alzheimer's disease was a terrible disease but one that I never thought of facing at this time of our life. My husband has just turned 59 and is suffering from this disease.. My fears of health problems at this age were that one of us might be afflicted with heart disease or cancer. I could have never imagined that this would happen to us at this stage of our lives.

In the fall of 1996 my husband was diagnosed (as close as you can be) with Early Onset Alzheimer's disease at the Mayo Clinic in Rochester, Minnesota. He had been having some problems with personality changes that we attributed to stress, maybe mid-life changes, depression, etc. Until this time he had been a very healthy and energetic person and had never had any serious health problems. He was a farmer and worked very hard at it, putting in very long hours sometimes, as most farmers do. He was full of life and loved to dance, bowl, throw horseshoes, golf and play cards. He loved collecting and restoring older John Deere tractors and took great pride in his hobby. He had been featured in a local television spot about his collection. Successful Farming magazine also had an article and picture of him with his collection. He was a devoted family man and loved, and still loves his children and grandchildren. He loved to be with friends and family. We followed about all of our children's school events and were beginning to do the same with our grandchildren. He was a man that hardly ever got angry, even when you thought he had a right to be. He was always ready to help anyone when they needed or asked for help. When he started having the personality changes and started getting angry over little things that didn't matter, we became very concerned. He had several physicals which showed him to be in good health. Finally, as things became more and more out of character, we knew we had to do something. It took a lot of work, but our daughter got an appointment made at the Mayo Clinic and we took him there for a check-up. He was put through many tests and through the process of elimination and other factors they determined that he had Alzheimer's disease. They can diagnose it with 85% to 90% accuracy. At this time the only true diagnosis is through an autopsy after death. When we finally received the diagnosis, our lives changed drastically. Our daughter, son, my husband's brother, as well as my husband and myself were all together in the doctor's office when we were given the results of all the tests and given the diagnosis. My feeling was that someone had just knocked the breath out of me! It was a long, quiet ride home with many prayers being said on my part.

When we got home we started looking for any information that we could find that might be able to help him and I also started reading books on what might be ahead for us. We knew there were several new drugs being tested and were close to being approved by the FDA. We immediately tried the newest medicine for Alzheimer's disease as soon as it came on the market. We were very hopeful that this might be of some help, but in our situation it hasn't helped very much. I think it was about three or four months after we had received this diagnosis that my daughter and I started attending an Alzheimer's Support Group. We have found this to be a tremendous help to us! As a caregiver I would strongly advise anyone facing this disease with a loved one to attend one if they can. Sometimes we just talk, sometimes we have speakers. We are there to support and help each other with the problems we might be facing at that time. We become like a family of our own. We can all understand each other, as we're all facing most of the same problems. Our loved ones are in different stages of the disease and one or two are now deceased. The ones who have traveled one part of the road of this disease can be of help to someone who is just entering it.

As a caregiver there are many things you have to deal with and I know that anyone who has never been faced with this disease can't understand what it's like. I know I never did! I knew it was a terrible disease but I couldn't comprehend the toll it takes on the whole family. We are losing a husband, father, grandfather, son, brother, father-in-law, son-in law, brother-in law, nephew, cousin etc. It is so hard losing your loved one, one piece at a time. I have heard it described as "The Long Good-Bye". It affects each and every member of the family! It is emotionally draining as you see them lose the ability to do one more thing. We have been very fortunate to have a loving and caring family. They are very supportive and that is a big help to me. The down side of this, if there is one, is that it hurts each one of them so much. I do thank God for each and every one of our family members, as I don't know what I'd do without them. We also have been very fortunate to have a lot of good and supportive friends. You never know how much each kindness means until you are faced with a situation like this.

Our loved ones are losing their dignity in the ability to think and with their physical abilities. As a caregiver you are given the responsibility for their care plus you have all of your regular work to do. In our situation I have many of the things to do that he did when he could. I have housework, yard work, bookkeeping, farming decisions and family and social obligations. A lot of things I've had to let go for awhile and I think people understand! I just do what I can do for now and maybe some other things will have to be eliminated for awhile. As a caregiver and wife, it is hard when you can no longer have a conversation with your husband about the everyday things of life. We are at the stage where walking is extremely difficult for him and his speech is getting very hard to understand. One thing I have discovered is that each individual with this disease is affected and progresses a little differently. It seems to progress more rapidly in younger patients. Some are violent, some wander away from home, some pace a lot, and some have physical problems earlier on in the disease than others. There are many things that happen in the different stages of the disease and they don't happen to each patient during the same time process of the disease. He no longer recognizes many people. As time goes on he may no longer know who I am or other members of our family. I think the way this disease works makes it one of the cruelest diseases there is. He can still play a certain card game and beats us most of the time. He also plays video poker and other hand held games. He does real well with them. I am grateful that he can entertain himself that way and has something to do that he enjoys. My life as a caregiver now seems to revolve totally around my husband. Each decision I make concerns him in one way or another. If I need to go away I have to have someone to stay with him. If I want to go outside and work I wait until he lies down for his nap and then I do it. He can't walk very well anymore so I don't worry about him wandering away but he has taken several falls and I worry about that. There are many changes in our lives now. He goes to bed very early and the nights are long for me. I'm pretty much alone in many ways. Summer has helped, as I can go outside and work for awhile after he has gone to bed.

One of my reasons for writing this article is that I hope anyone with a loved one with this disease would please consider attending an Alzheimer's Support Group in your area. I would also ask you to "PLEASE" consider calling or writing your Senators and Representatives and ask them to support a $100 million increase in funding for Alzheimer's Research at the National Institutes of Health. The Alzheimer's Association is making a commitment to increase its private funding of reasearch from $10 million to $30 million per year over the next three years. We would like to find a way to prevent and/or cure this disease. Alzheimer's disease can strike anyone, as we well know! It does not discriminate against anyone! We have a former President of the United States suffering with it. My first concern is finding a cure or finding a way to prevent this disease. Even if your family is never affected with Alzheimer's disease, it is estimated that there are 4 million people suffering with this disease today. It is predicted by 2050 or early in the next century there wil be a many as 14 million people suffering from it. That will put a tremendous toll on Medicare and the financial security of millions of people. If you would take a minute out of your day to make a call to your Senators and Representatives, many families who are coping with this disease would greatly appreciate it! A cure or prevention may save you and your family from this terrible disease.

Thank You!

This was published in the Marshalltown Times-Republican on Saturday, June 6, 1998.


UPDATE: April 11, 1999

My husband entered our local nursing home on July 21, 1998. He has now lost his ability to walk and talk. He is having some trouble now with his chewing and drinking. He still knows the immediate family, we think! Our only means of communication with him is a laminated sheet of paper with some pictures and the words, "YES" and "NO" on it. He will touch those words when we ask him a question. He usually answers correctly. He has learned his new routine there and does not like to have it changed at all. He seems to feel very secure there which I am grateful for! He still plays his video poker game, in fact he has two in his shirt pocket. He amazes me that he can still play it and does it CORRECTLY! I have sat and watched him and he knows exactly what he's doing. I am really glad that he can do something that he enjoys with his time. This is a very different life for me now but I do have a lot to be thankful for. As I said, I have a supportive family and a lot of good friends. That "REALLY" helps a lot. I have also found support through the Candid Chat Room mentioned in this site. That's also how I found out about this wonderful web site and several other very good sites. I don't think anyone can fully understand the impact this disease has on a family until you have lived it! I hope the day comes soon when no one has to! The increase in funding has passed but the need for more research is always there and can't come fast enough. I WILL keep talking to my legislators about this! One of my congressman's grandfather had Alzheimer's disease and he is concerned about his father at this point. He fully understands the importance of research.


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