I Am Learning And I Want to SCREAM

I have been researching about Lewy Body Dementia and I am really struggling with conflicting emotions. First I "need" to know what is happening to my mother. Which is what pushed me to search the internet for information about Lewy Body Dementia. But the more I search the more emotionally conflicted I become.

Mom first became "sick" almost 6 years ago. She went into the hospital in November of 2005. The same time I was diagnosed with breast cancer. She went from her assisted living apartment into a rehabilation center and I started chemo. I told my sister and brothers that I wanted to take care of my mother and they said I had all I could handle taking care of myself. Which was true but that didn't take my desire away. I submitted and allowed them to make decisions for Mom and I concentrated on living.

I made it a habit to call her every week. Sometimes I couldn't reach her. I would call at a different time and find out that she was out with my sister or out with my brother. And that was OK. I felt that she was being well taken care of.

But, after a second near death illness,my mother began to change. She was not able to carry on a meaningful conversation. She would repeat things over and over. Sometimes she would tell me wild stories.

My favorite story is about her marriage to a wonderful man who was tragically killed in a plane crash shortly after they were married. Her new stepson was going to set her up in a lovely apartment and take care of her. She believed that fantacy for weeks. But then after awhile she moved on to another equally unbelieveable story. I knew nothing about her LBD diagnosis and blamed her bouts of confusion to sleeping too much. Everytime I called she told me she had just woken up or was about to go to bed. I was convinced that she was bored and lonely and was inventing a dream world to makeup for the fact that my sister and brothers seemed to be neglecting to visit her.

I visited her between chemo and radiation treatments. I stayed with her at the rehabilation center and we just sat and visited during the day. She was herself most of the time but there were times when she would slip away and that made me very sad.

I went home and finished my treatments. I continued to call her every week. I was still convinced that all she needed was more contact with a loving family. I was angry that my sister and brothers were not providing that for her. But I didn't know. I didn't know that my sister was doing all the things that a loving daughter does. I didn't know about the dinners out or the trips the the house for the day because my mother forgot about them and couldn't tell me about them. All I knew was the lonelyness in her voice and the confusion, the ridiculous stories, the begging to be taken home. My heart was breaking because I was so far away and I longed to have her close.

On November 11, 2010 I flew to Minneapolis and on November 14, 2010 I flew back to Indiana with my mother in tow. I had such plans. We were going to spend every minute I could spare together. We were going to sit in the garden and sip tea and watch the humming birds and laugh and talk. We were going to be two "old" ladies walking in the park. Then I learned that Mom had LBD.

My mother cannot walk more the a few feet without assistance but if not watched closely will walk down the hall into other patients rooms. She eats like a bird. She cannot verbalize her thoughts so she reads everything that she comes in contact with. She does not remember what she had for breakfast 5 minutes after she eats. She is incontenent both of urine and bowel. She becomes aggitated easily. She is only a shell of the woman I remembered. But, she is funny, witty, mischievous. She is caring in her own broken way. She loves my cat even if she can't remember his name. She loves old movies, and chocolate covered cherries. She likes to watch the birds at the bird feeders and watch children playing in the park. She knows my name and my husband's name. Her eyes light up when we talk about her trips to Isreal. She smiles EVERY time she sees me. A day with her is like a day in sunshine.

I read that people with LBD live on the average of 7 years after diagnosis. Mom was diagnosied almost 6 years ago. I find myself begging God to give me more time. Other things that were important to me just aren't anymore because I want to spend every waking moment with her. If I could I would never leave her side.