Two high school students put this project together. You may recognize yourself or your family in the story. We thought it was interesting to read the perspective of Alzheimer's disease and Sundowners Syndrome from the eyes of teenagers, and what they think the experience may be like from their research. Please feel free to share your opinions by contacting us at lrc@agingwisely.com. We look forward to hearing from you.

Carol's Story: A Diary of Alzheimer's Disease

Written by Ted Chamberlain and Dan Roberts

Palm Harbor University High School

11^th grade Center for Wellness and Medical Professionals

Approximately five million people in the United States suffer from a progressive degenerate disorder known as Alzheimer's disease (Nadelson 9). Great deals of research and studies have been performed to help understand the disease that debilitates so many of our senior citizens. The government provides 350 million dollars per year for research. 50 percent of Americans who live to be 85 years old will be diagnosed with Alzheimer's disease (Cohen 128). With such an incredibly high expectancy rate, a great deal of time and money is being invested to find a cure (Cohen 127). However, this paper will provide a more intimate view and display the effects on one particular individual known as Carol. Exerts from her diary have been provided by her husband Paul to show how the progression of Alzheimer's disease.

3/28/00
Diary, hi my name is Carol. I received you last night as a surprise from my husband Paul. It was my 65^th birthday last night and he took me out for a romantic dinner, everything was perfect. My favorite gift that he gave me was you. I promised him I would write in you every day until the day I die. Oh yes, another present he gave me was a promise, he promised me he would call our children and we would spend 2 weeks together over the beginning of summer. I can't wait.

Alzheimer's disease generally affects older people. It belongs to a common group of disorders known as "senile dementia "( Nadelson 21). In this story, the victim is a woman; this is quite common as women are afflicted with Alzheimer's more frequently than men (Nadelson 21).

4/16/00
I just got home from the doctors office, I had completely forgotten I had an appointment until Paul called and reminded me about it. While I was there I couldn't remember my zip code, it's probably because it just changed but still it was very awkward because I did know it before. My doctor said everything looked pretty good, he recommended that I exercise more and that I start taking vitamins and minerals.

Often, as people age their memory diminishes. However, short-term memory loss is usually the first perceived and most critical objective symptom when diagnosing Alzheimer's (Cohen 27).

4/18/00
Dear diary, something doesn't feel right anymore. I seem to be losing my memory and am beginning to be very forgetful of the things that I normally wouldn't. For example I forgot to go to the store today and on top of that I forgot to call my son Kyle, it was his 31^st birthday. Paul ended up calling him early this evening. I don't want to mention to my husband or anyone that my memory is diminishing because we feel so young and my sex life has been great. Talk to you later.

People with Alzheimer's disease feel the need to hide their disorder from friends and family. They do no want to be branded as the typical elder who has "lost their marbles."

4/20/00
My son John called today it seems like things are going well for him and his family. The only problem was with the end of our conversation, he asked me "why I didn't ask how Kelly was doing." Kelly is my two year old grandson and I just entirely forgot about him. The worst part was when I responded to that question, I asked him who is Kelly? I acted as though I had no idea who he was and that I had no relation to him at all. John also asked me if I was excited about him and Kyle coming down for the summer, he said I haven't seen my kids in a long time. I said yes I was excited about them coming down even though I had no clue what he was talking about.

Carol is now entering the more developed stage of Alzheimer's. Confusion, disorientation, and wandering will begin to occur more frequently (Cohen 28). A victim of Alzheimer's will often try to hide their disease by studying family photographs and names, in order to conceal their memory loss (Cohen 28). Again, Carol is disguising her disease.

5/23/00
My husband just reminded me about our kids coming down, I had completely forgotten. My forgetfulness is really starting to scare me. I have decided to tell my husband if he doesn't already know and I will tell my doctor too. I started studying my photo albums and am trying to learn my family's names and events that took place to I don't look like I'm getting old.

Often patients wait until they are frightened and worried about their memory loss before speaking to a doctor about their condition. The intermediate stage of Alzheimer's has set in on Carol. Soon she will have mood swings and battle with depression (Cohen 20)

6/7/00
Today was the first day my family came home it was so great to see them again, I actually remembered all of their names. Paul said that I told random stories of the past and cried frequently, I didn't remember doing that but thought that it was possible.

People with Alzheimer's disease typically have decreased perceptions of time and space, agitation, restlessness, and mood swings (Cohen 20). Carol's inability to control her emotions is documentation that she is succumbing to Alzheimer's.

6/21/00
I just got home from taking the boys to the airport, I will miss them. During the drive home Paul asked if I have heard of a disease called Alzheimer's, I said no. He tried to explain it to me but I didn't understand what he was talking about. He said he was going to take me to the doctors tomorrow, then I told him that I have been forgetting a lot, I started crying and then so did he.

Paul crying indicates the emotional toll that relatives of people with Alzheimer's undertake. Caregivers must come to terms with the fact that the disease is progressive and degenerative. Their loved one will spiral downward through the stages of Alzheimer's dementia. (Cohen 30). Paul must now accept the difficult role as caregiver, and realize the difficult road that will follow.

6/22/00
My doctor and Paul say I have Alzheimer's, a build up of plaque in my brain or something like that. They say there is no cure and that I will forget nearly everything even writing. That night after Paul and I had a long talk, I told him that if I got really bad that I would want him to finish writing the journal for me, he said of course.

Alzheimer's disease is caused by abnormal accumulation of plaques and by neurofibrillarly tangles in the brain (Encyclopedia 129). The plaque Carol describes is an excessive build up of beta-amyloid proteins.To add to the brains malfunction, neurfibrillary tangles pretevent transportation of synthesized products within the cell to its organelles.

6/29/00
Today I took the dog for a walk and then went swimming with it in a lake it was so much fun. Thomas says that I have to be in before dark because I get real angry and aggressive when the sun goes down. Tomorrow I'll play with sugar some more.

Carol is experiencing the sundowner's syndrome. This constellation of behavior is a hallmark of Alzheimer's disease. As dusk approaches, just prior to the setting of the sun, the decrease in light intensity has an adverse effect on the brain. This results in a higher severity of the patients symptoms (Cohen 31). Oral supplementation of melatonin and some herbal supplements help alleviate these difficult symptoms. Calling her husband Thomas demonstrates her extreme confusion.

7/15/00
This is Paul, Carol is having a horrible time she can't remember anything. She thinks my name is Thomas and she doesn't even know who she is. She would try to fight me whenever I helped her and she couldn't control her bowel movements. I have to help her in some way.

The plaque in Carol's brain is now suffocating her neurons by inhibiting blood flow to them; this makes the disease progressively worse for the patient (Encyclopedia 145). By this stage of regression, Carol is experiencing incontinence, one of the signs that the final patient has entered the final stage of Alzheimer's Disease (Cohen 39)

7/16/00
I have to keep Carol in the house. I can't take her out anymore its just unsafe. I called a nursing home to see about putting her in and they said it would cost about $6,000 per month. I only have approximately $150,000 so I decided to call a lawyer. The lawyer was brilliant; she came up with a plan so that Carol was eligible for Medicaid.

8/1/00
Today I took Carol to the nursing home, she is extremely quiet now and doesn't do much. I will visit her everyday. I told Carols assistant that I would like her to read the diary to Carol so she knows her life and how much fun she had and how she ended up in a nursing home.

I love you so much Carol and thank you for the best life a man could ask for. I will miss you always and forever.

Love your husband Paul

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Work Cited

"Alzheimer's disease" Encyclopedia Britannica
<http://www.britannica.com/eb/article?eu=6056>

Cohen, Elwood. Alzheimer's Disease Prevention, Intervention, and Treatment.

Lincolnwood, Illinois, 1999

Nadelson, Carol. Life out of Focus Alzheimer's Disease and related Disorders.

Chelsea House Publishing, 1999

"Alzheimer's Disease" Encyclopedia online powered by elibrary

www.encyclopedia.com

Author not available, The effects of dementia, The Evening Standard ( Manawatu, New Zealand) 7/29/97