Niki kept a journal beginning from the first time she was notified that her mother had "probable Alzheimer's disease", until the end of the school term. At that time (spring of 1995) Niki was attending the University of South Dakota. This journal does a good job of depicting the emotions at that time.
APRIL 4, 1995 -My mom called today to tell me that the doctor had called her. She said, "He said I had Alzheimer's, isn't that silly?". "Yah!" I gasped. My mom has had symptoms of this and now we can no longer deny it. How could they call her and say that though. It seemed kind of cruel to me. I am scared and sad, this is so crazy, my mom is way too young to have Alzheimer's (or old-timers as I used to call it). My first instinct is to drop out of school and go home to be with her, nothing seems more important than to be with her right now.
APRIL 6 - I told Alison today about my mom, I thought she would be most understanding since she lost her mom to cancer when she was young. I was so emotional and moody that for the sake of my friendship with her I had to say something. I thought she was going to cry when I told her so I just changed the subject quickly before things got too emotional, I had already cried enough.
APRIL 7 - Tori and I drove to Rochester today, primarily to see my mom. I wasn't sure how my mom was going to act, so I told Tori about her having Alzheimer's disease on the way there. She didn't know quite what to say which is understandable since I didn't either.
APRIL 8 - My dad told me that my mom wouldn't lock the doors for a week before I got home, afraid I would be locked out. All my mom seemed to do was watch TV while I was home. I did notice she has still kept up her habit of not stepping on cracks, which she started around Thanksgiving last year. "If you step on a crack you will break your mother's back" she repeats.
APRIL 14 - Home for Easter. I noticed it is getting harder for my mom to do her hair and makeup. It also seems to be harder for her to call and make an appointment to get her hair cut. Hopefully Aunt Debbie can fix it up before they go to Florida. My family has always been horrible at communicating , especially me and my dad, but for some reason I feel us getting closer. He has actually been talking and treating me like an adult, maybe for the first time. For once in my life I feel like nothing is more important to me than my family. I want to be there for my dad and my mom, what ever it takes.
MAY 12 - This is my first day back since Easter. Mom seems to have gotten worse. It seems hard for her to be around people not in the family without staying very reserved. All she has been eating is hot-dogs and Lunchables, she no longer cooks and hasn't for about 10 months. She no longer reads, it seems to be to straining, giving her a headache. We went out to eat with friends and it seemed hard for her to keep up with conversation. She has also acquired some new habits such as: obsessively putting on lip stick, wanting me to wear lipstick, following me around the house hugging me and tickling me, trying to kiss me on the lips to get lipstick on them, kicking and hitting the dog for no reason, and singing and clapping loudly that she could have been a country singer.
MAY 14 - I have been trying to cook so my mom can eat a little bit healthier. She has been eating my food, although I think she would rather eat her Lunchables. I want to be by my mom all day long. I feel guilty leaving the house without her, I just want her to know I love her and always have. I also feel a tremendous guilt for any mean thing I have ever done or said to her, but I guess that is just a part of growing up.
MAY 16 - My mom started a week of tests at the Mayo Clinic on Monday, today is Tuesday. I took my mom to her tests today and will be with her for the rest of the week since my dad is now working in Mankato. Yesterday she talked to a doctor and had her second MRI done. Today she had a blood test for which she had to fast, and a four hour memory test with a psychologist. The memory test consisted of her answering questions involving time, simple arithmetic, her repeating what the doctor had said, and more questions of the like which seemed very difficult for her to answer. She had one fifteen minute break in the entire four hours, so I brought her some fruit and Tylenol because I knew she would have a terrible headache from all the concentration they were having her do. When I saw my mom during the break she was fairly down, I don't think (I know) she doesn't understand what is wrong with her and why she is having to take all these tests. I wanted to take her home right then, but I knew I couldn't because it is our only hope that they will find something physically wrong with my mom that they can cure.
MAY 17 - Yesterday my Mom had a "sleep and awake" EEG done. It was necessary for her to be sleep deprived for this, which wasn't easy to do. She was only allowed four hours of sleep, it took me about 20 minutes to get her up that morning. We have also been doing a 24 hour urine test to check if there is any lead or metals in her body. This also has been quite a chore. Today we went to Saint Mary's Hospital for a Brain Scan.
It was about this point in time that the second diagnosis was made at the Mayo Clinic of "probable Pick's disease". Niki remained for the summer and was Shirley's primary caregiver during that period.