The 36 hour day:
I just read an article on CNN telling folks how to deal with Alzheimer's patients at the holidays. Maybe I need to write up my experience. It's not so easy to deal with as what they printed. I'm tempted to send my story somewhere, but want anonymity if I do.
Mom knew
My dear mother passed away this year. I miss her -- but I am relieved that this dreadful disease no longer haunts us. It's funny -- my brother and I had different experiences. He and Stacy reported a smiling, happy woman. Especially at the end, they saw a completely different Mom. He didn't see the anger, the confusion, the conflicting emotions and conflicting memories. They didn't see the violence in the hospital -- this sweet little woman thrashing out, threatening to kill people. She was so scared, but the infection made her crazy. Nothing could have prepared anyone for this.
The Changeling
Earlier in this progression, I would visit and find Mom changeable. She could go from happy to sad in a heartbeat. Usually she was an unsettled woman. It wasn't' that she didn't recognize me. She always knew I was there to see her. She just couldn't really know if I was her sister, daughter or niece. Maybe she thought I was her granddaughter. Even if she knew my name, she wasn't always straight about how I became a part of the family. She asked me every visit how I became part of this clan.
Travel the Seven Seas
She always thought she was traveling. I'd come to visit and there she was, packed and ready to go. She'd want to change flights and leave early. Didn't like the hotel. Didn't like the other guests.
She forgot the years she cared for Dad. It was agony hearing Mom say she should have been there for him and shouldn't have let him kill himself. HE DIDN'T! It was hard to hear her say that he left her and she was a divorcee. None of this happened, but she didn't really know it. She grieved as if it was real and if I said otherwise, she didn't believe me. So she went through a strange grieving process and took little comfort. These emotions would be hard for anyone. One thing that was true, when she said she wanted to die, she really meant it. She knew what was going on. She knew it as it happened and it drove her nuts.
Sunset not so nice It was hard to bring her home after dinner. That is when the disease had the most control.
Mom did this sunsetter thing where she was worse as the days got darker.
Whatever she thought, it was as painful for me as it was for her. Well meaning folks would say: She wont' remember later, don't worry about it. That just isn't true: Mom would run the same play through her head on a daily basis; she would put herself through agony feeling the normal feelings of someone who suffered the painful emotions of loss even though she did not suffer those losses.
I couldn't bear to look at the stress on her face as she tried to sort things out. Mom was an intelligent woman. Mom was smart and sharp until the last few years. So one of my last visits, I sat and gazed with love at my Mom. She had pneumonia. She had an oxygen tube. As she ate, she noticed me looking at her and snapped at me: "Stop looking at me like I'm a freak!" I wasn't. I told her I was looking at her with love, but her comment tore through me like a saw. (still hurts now) Today, I think it was Mom saying she knew what she looked like and didn't like it. The lady was going away. The one always dressed to the nine's was not there. Ah, it was awful. And she knew it.
There was some good in this:
My mothers mind was gone. But she would squeal with delight when I walked in to the room. Later, the irritability came on strong if she didn't like something or someone. On lucid days, we had fun. On lucid days, we shared love and laughter, and enjoyed many peaceful, loving moments. We bonded well during those visits.
Gratitude
I'm grateful for these years, but will always feel I didn't do enough. I know it's a useless emotion. Still, it's there. I needed some sort of life too. I couldn't do more than I did.
But the good is that I kept going back. Mom and I had a rocky relationship basically because she loved me and was so worried all the time. Day by day, one visit at a time was all I could do. But her final years were mixed blessings.
A toast to MOM
Thanksgiving was always yours. And each year I remember the love that went into your feasts. You did good, Mom! This year, go do it again. Be with your sisters, your Mom and Dad and your sweet Stanley. Be at peace. WE MISS YOU, MOM! But we love you and we go on!
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