OUR DANCE WITH MOMMA
There is a popular Garth Brooks hit song called "The Dance" with a verse in it that say's, "I could have missed the pain, but I'd had to miss the dance." Little did my brother and I know how close to home that song was going to hit us. This is the story of how our dance with momma began.
One day toward the end of July 2001, I went to pick up our mother for supper. When she came out of the house to get into the car she was walking slowly and unsure of her steps. In a kidding way, I asked her why she was walking like an "old lady". You see she was 76 years old, but never looked or acted her age. There was something quite different. She got in and proceeded to tell me she had been feeling dizzy for a few days. Right away I told her we would get a doctors appointment to find out what was wrong.
Within a couple of days, she had an appointment with her regular doctor. He thought she had an inner ear infection and gave her a prescription. We thought all would be well in a few day's. Not so. The medicine didn't help her. By now she is experiencing many vision problems. Blurred and double vision and seeing extremely bright colors were her main complaints. The dizziness had not subsided either. I made her an appointment with her eye doctor. He gave her a thorough exam, but couldn't find anything wrong. He thought if she would wear a patch over the eye that was bothering her the most it might help. He also concluded since this had come on her so fast, it might go away just as fast without ever knowing what caused it.
Momma had been working in an insurance office half day's every day pretty much since our Dad died with Alzheimer's in 1999. Besides the problems she was having, she hated missing work. At her age, it was good for her to get out every day, and be around people. We always thought this was one of the things that kept her so young at heart.
She tried the patch, but it didn't seem to help. By this time we were both getting worried because nothing seemed to be helping and no one could find anything wrong. My brother, Kevin and his family were coming for a short visit in a few days and she sure didn't want to be sick while they were here. I told her all I knew to do was to take her to a nearby emergency room and she agreed. We went on Friday August 3rd. They ran a few tests such as a C.T. Scan, E.K.G. and blood work. After a while a nurse came back and said all the tests were good. The E.R. called her medical doctor with the results. He told them he wanted an M.R.I. and a carotid artery test done next week.
On Sunday, August 5th, my brother and his family arrived. Right away Kevin noticed there was something wrong with momma. No matter what, we were all happy to be together. On Tuesday, August 7th, Kevin and Dawn (My sister-in-law) took momma for one of the tests. Wednesday night, our family and a couple of close family friends went out for supper. Although we enjoyed being together, celebrating my niece, Jodi's birthday, something was definitely wrong with momma. I took her for the M.R.I. and another visit to the eye doctor on Friday August 10th. The next week the results were in. Again they had found nothing abnormal in the tests. The eye exam also brought nothing.
It was now the middle of August and she had begun to loose her short- term memory more and more everyday. I would be with her at her house most of the day. If I would leave for a while, when I would come back to check on her, she acted as though she hadn't seen me all day. It was very hard to see this strong woman being so unsure of herself. It was scaring her and me to! I didn't know what to do. I discussed it with some of the family members and friends. I decided to take her to yet another emergency room facility in Champaign ILL. Our dad had doctored there and they had a good reputation. On Saturday, August 18h, we went to Carle Hospital in Champaign. They ran the same initial tests the previous hospital had run. They came to the same conclusion. The doctor said there was nothing wrong with her but natural aging. I got very upset with him, and told him this was not natural aging. Our momma had lost more short-term memory in 3 or 4 weeks than our dad had lost in 6 or 7 years of Alzheimer's. Along with the other problems she was having, this was NOT natural aging for a woman who until the last of July had been working everyday! He was then prompted to get her an appointment with a neurologist for August 27th.
We came home and for the next nine days hoped that this doctor would find something and be able to help her. During these nine days she was getting much worse. Sometimes she would forget to put on articles of clothing that she normally wore everyday. On Monday August 27th, the day of her doctor's appointment, I was helping her get ready to go to our friend Janet's beauty salon. When she came out to go she didn't have her teeth in. She never went anywhere without her teeth. I told her she better go and put them in. She said that someone must have stretched them last night because they were to big for her mouth. Of course, this wasn't true, but she wasn't able to get them in or forgot how too. We went on to her appointment, Afterwards we stopped by her house before leaving for the doctor. She went right in and put her teeth in like clockwork. Who knows what happened in that short time.
The neurologist, Dr Aronson, put momma through an extensive exam in his office. One thing really stood out that day. Her eyes weren't tracking right. She couldn't follow his fingers, as he would move them around. She answered most of his questions correctly and to his satisfaction. He wanted to see the notes from her eye exams and the M.R.I. films from the previous hospital. He was going to consult with a neurological-ophthalmologist and see what he thought the problem could be. He told us to go home and he would be in touch soon. Little did he know how soon!
In the true fashion of our family, the next thing on the agenda was to find a good place to eat. Mom, my good friend Sharon and I were all up for that. Sure she had to hold on to my arm while walking into the restaurant, but there had always been precious little that had ever kept any of our family from a good meal.
On Thursday of that week, she began to startle and become easily frightened. The next things were hallucinations. They were horrible!!! She said she saw mean, evil people coming after her and I. They were going to hurt us. I will never forget her screams when this would happen, for as long as I live. I felt useless!!! She had always been there to help everyone in our family. Now, when it was my turn, I didn't know what to do. By Friday, August 31st, these episodes were happening more and more. She was crying and I held her in my arms and told her not to cry. She said, "Wouldn't you cry if you were afraid?" She was right--I was crying. I told her the only thing I knew to do was have the ambulance take her back to Champaign to the hospital to see Dr. Aronson. She agreed. In her true fighting spirit, she walked out to the ambulance with the E.M.T. Just holding on to her arm. This was because she insisted she wasn't sick enough for the stretcher. That was our momma. That was also the last time she was at home. They kept her in the E.R. overnight for observation and admitted her the next day. By this time I had called Kevin and told him he needed to come. We needed him. He resides in Florida, but in record time he and my other niece, Jessica were in Illinois. He will never know just how much I needed him. Our Momma had never been sick. She was always the caregiver with the loving heart.
Kevin had come home with the idea of taking mom home with him. They had the room and more family down there to help take care of her. I had told him that was fine with me. He and Jessica arrived at the hospital a little before I did that Sunday morning. When they went up to momma's room, at first she was afraid of them. She knew them, but she was still afraid. That didn't last long. She loved her boy and granddaughter very much and was very happy to have them there.
Like before, they started taking all kinds of tests on mom to try to pin point the problem. Like before, nothing was showing up. Kevin wanted her tested for encephalitis because some of the symptoms were the same. Mama and I had visited Kevin and his family the end of May for my nephew Jacob's graduation. Since they have all kinds of bugs down there, it was possible she had been bitten. This was checked when they did the spinal tap. Dr. Aronson had also requested an E.G.G. to be taken. This was the only test that showed up anything. The E.E.G. or brain wave test showed that her brain waves were grossly abnormal. What this meant we didn't know. He also briefly mentioned that he had saved some of the spinal fluid to be sent to California to be tested for Creutzfeld~Jacob disease. CJD for short. He said this was a one in a million chance, but he wanted it to be tested because of the E.E.G. results. I looked at my brother and said, "We're that one in a million". This is something I will never say again as long I live.
For the next few days, Kevin, Jessica and I were there with mama every day to spend time with her and to help momma in any way we could. Jessica was very good with feeding momma. This was something that hadn't changed. Her appetite was still very good, but because of the problem with her eyes, she wasn't seeing good enough to feed herself. The testing continued. Our friends, family members and minister all rallied around us for support. The three of us, and momma needed their support oh so much! Despite the outpouring of love and prayers, she was getting worse by the day. Kevin decided that it was time for our sweet Dawn to fly up from Florida. None of us were sure what the future held for our precious momma. But we were sure that we needed to be united. Kevin asked mom if she wanted Dawn to fly up on a crop duster and she smiled. She hadn't lost her sense of humor.
After Dawn's arrival we had a meeting with the doctor about the results of the test from California. The test came back negative for CJD. But the doctor still felt that was what she had. The only other definitive test was to do a brain biopsy. We were skeptical about that. We thought we needed a second opinion. Maybe there was something the doctor had missed. The doctor encouraged us to get the second opinion.
Kevin talked with a long time friend, Bruce Baldwin, for guidance on what to do. Bruce isn't a doctor, but works within the medical profession, so Kevin thought he might have some insight for our next step. As I've said before, Mamma had never been sick so this was all new to us. Our cousin Joey got on the Internet and found the name of a Dr. James Mastrianni at the university of Chicago hospital. He only dealt with Creutzfeld~Jacob disease. Kevin promptly called him. Dr Mastrianni answered his own phone and Kevin said, "That's the man we want". He told us to get mom up there as soon as possible. He would be waiting for her.
The date was now September 10th. The arrangements were being made to transport her the next day. The next day --September 11th -- We were all in mom's room hoping to get word of when she would be moved. Little did we know what was going on in the outside world. Although the tragedy of this date was a most devastating one for thousands of people and their families, our own tragedy was unfolding before our very eyes. We did make phone calls checking on the safety of our loved ones who were anywhere near "ground zero". Because of what had happened in the United States and with the heightened security, Mom's trip was on hold for almost 2 days. During this time we kept asking mom if she wanted to go to Chicago and go dancing. We said we were going to take her up there to another doctor and she was going to get well. After that we would celebrate with her and go dancing under the stars of Chicago.
In the wee morning hours of September 13th, Mama was finally admitted to the University of Chicago Hospital. Once they got her settled, we went to find lodging for the rest of the night. Initially, Dr Mastrianni said he thought she did have CJD because of her condition.
Even so, he had many, many tests taken on her. He didn't want to leave any stone unturned. By now she wasn't talking very much. It was hard to hold her attention very long. We all tried to play little games with her about T.V. shows she liked. Sometimes we would get a reaction, sometimes not. Because of the nature of this disease, it was hard for her to understand us when we would tell her to swallow her food. It had affected that part of her brain, that told her to swallow on her own. This led to IV's to nourish her and keep fluids in her body.
We still kept praying for a miracle everyday as we made our 100-mile trek to Chicago. This just couldn't be happening to our momma. Although they didn't want to, Dawn and Jessica had to return to Florida. The day before they left was, I think, the last time we heard her talk. Jessica told her that she loved her, Mom responded with "I love you, I love you, I love you sweetheart." Although she said it to Jessica, I really feel she was saying it to all of us.
Kevin, thank God, was able to stay here with mom and I. Almost everyday we would leave early in the morning to see mom. There were always many other doctors, along with the two main ones, checking on mom at least twice a day. Dr. Christie Stine was always so helpful in explaining things to us. She was so gentle, with a kind heart and was oh so sweet to our Mother. We will never forget her. She kept telling us to talk to mom. She said even though we didn't think so, momma could hear us. Well, I don't know if that was true, but I hope so. We had a routine everyday -- Kevin would brush her teeth and rinse her mouth out. Then he would try to put her false teeth in for her. She wouldn't have wanted anyone to see her without her teeth. Sometimes her stubborn streak would show up and she wouldn't open her mouth for him. That was ok. He knew he tried for mom's sake. Then I would try to comb her hair, this was another thing that was usually a must. She was always very neat about herself. She always said you never know whom you might run into, so you better look good.
During this time Dr Mastrianni approached us with the idea of trying an experimental drug named quinacrine. It was an old drug used for treating tapeworm. It had been tried in two patients in California. We agreed and the drug was ordered. Another hope. We agreed to let it be given to mom for three weeks and see what happened. By this time the diagnosis had been set in stone. It was definitely CJD. No treatment and no cure to date. There were many ways she could have gotten this disease. She could have been born with it. We'll never know. We did agree for there to be an autopsy in hopes that it would help someone else. He also told us there was no reason that momoma couldn't be moved to somewhere closer to our hometown and still receive the drug.
We got busy with the hospital staff and the local nursing home in our hometown to make sure they were capable of caring for her and that they would take her. This disease is not well known, especially in a small town. Finally everything checked out, they had room for her and the arrangements were made. On October 9th she was transported back to our hometown of Hoopeston, ILL. Momma sure did cause a stir in that hospital!! She was put in what's called a swing bedroom in the hospital. This is a room used to keep patients in while they are waiting for a room to open up in the nursing home. In the day's to come, we decided just to keep her in that room because she could be more easily taken care of there.
The experimental drug was given to her through a tube that ran up her nose and down into her stomach. At first they used small tubing. It didn't seem to bother her too much. But it kept getting clogged. They increased the size of tubing. This was very uncomfortable for her. A few days short of the time we agreed on, the tube came out. There was no reason to put it back in. There had been no changes and she didn't need the discomfort.
Kevin and I would go see her a couple of times a day. We would talk to her and tell her we loved her. The doctors had told us that sometimes, just for a brief moment, everything would click and she would know what we said. Sometimes Kevin would read to her from her bible. I know she really liked that. We would make sure that everything was being done for her to keep her comfortable. After getting over the shock of the disease, the nurses and aides were very good to her. They would talk to her while they were turning her or bathing her. Since she wasn't getting the quinacrine anymore, they changed the IV from liquid food to sugar water. Any additional medicines could be put through the IV. We hadn't wanted her to have a catheter because of the chances of infection, but in order to make it easier for them to care for her, we agreed to it. We tried to work with the hospital as much as we could because we were very blessed they would even take momma. Some institutions won't because of the nature and the unknown nature of the disease.
Kevin had been here quite awhile, with mom and I. Although I know he didn't want to, he had to leave for his home and his work. I know it was very hard for him to leave. If I remember correctly, it was then about the middle of October. From then on, it was up to me to check on her twice a day. No one told me to, but I knew if it had been Kevin or I in the hospital, momma would have never left us alone for a very long time. One day I was missing her talking to me. Although for a long time, she hadn't been able to see, this certain day it looked like she was looking right at me. I looked deep into her beautiful blue eyes and said "Momma, please say my name just one more time. Just say Becky, please." Of course she couldn't. I kept looking at her and then I said," Well, if you don't want to say my name, can you smile at me? Please momma, I know how smart you are and I know you can do it." I think God let everything click for a moment because the corners of her mouth turned up like she was smiling 2 or 3 times. I thanked her and she stopped. My brother told me it was just an involuntary twitch that went along with the disease, but mom and I know differently.
As the disease progressed, the brain would simply not tell organs to function, causing them to shut down. This is exactly what happened. Her kidneys had almost stopped working, so the decision was made to take liquids away. There was no reason to keep fluids pumping into her body when her kidneys weren't expelling it. This would have done nothing but make her body swell. We didn't want that to happen. Amazingly, she still looked good for all she had gone through. This, I think, was December 12th.
Dr. Stine in Chicago had told us momma would probably be in heaven by Christmas. On Sunday afternoon, December 16th, I was visiting her. She had been looking so sad for the last week or so. I was holding her hand talking to her. I told her it was all right if she wanted to go be with Daddy. I had told her that before, but that day it clicked. About 4:00 pm, she decided to go to dance with dad in heaven. As the song says "We coulda missed the pain, but we'd had to miss the dance "
This is in loving memory of our mother, Annetta "Tiny" McIntyre. From her children, Becky and Kevin.
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