It's a Miracle?

I talked to my dad this weekend and got an update on my mom. He decided not to tell me right away with the good news--he wanted to see if it stuck before he got his hopes up. My mother--who has Alzheimer's and has been chair bound and mute for the last nine months--is walking, talking and feeding herself.

It is kind of unbelievable. That is not to say that I don't believe it or think it isn't true. I believe she is walking, talking and feeding herself. I don't believe her Alzheimer's is receding, though. I think something else is going on.

Many months ago (I don't remember when), the staff at Danbury found my mother one morning in a different state.

"What has different about her?" my dad had asked Deena, the head nurse.

"She wasn't crabby and angry," she had said. "We thought something had happened to her." Even Alzheimer's patients don't have that dramatic of changes in behavior overnight.

My dad met my mom at the hospital. One possible explanation for this change was my mother could have had a stroke. The only way to tell was for certain would have been to give my mother an MRI.

"An MRI isn't worth the trouble," my husband said, echoing what my father had been told by the physicians at the hospital. "She couldn't sit still for that long, and they would have to anesthetize her. It wouldn't be worth the risk. Plus, the treatment wouldn't change."

One day a few weeks ago, a new hospice nurse came to see my mom. The new nurse gave my mother a spoon and a smaller bowl to see if she could feed herself. Much to everyone's surprise, she did. After months of being spoonfed, my mother used a spoon and fed herself.

A few days later, Laura, one of the regular nurses, tried to get my mother to walk. After months of being wheelchair bound, my mom is walking with assistance from a nurse. After my skiing accident, my quadriceps atrophied after not using them for two weeks. I feared my mother's leg muscles would be similar to mine after the accident--inert due to lack of use. Somehow, my mother's legs could handle walking. It sounds like they aren't that strong, but they are strong enough to stand and move with help.

I talked to my dad and Jack about my mother's miracle recovery. We suspect my mother had a small stroke or a TIA, and now she is bouncing back from that setback. When my grandfather had a stroke, he had speech and occupational therapy. My mother didn't have rehab for a variety of reasons. First, it was unlikely that she could have understood what was happening and could have participated. Second, they didn't know what happened, so they didn't know what to do to make her better. With her Alzheimer's, she couldn't articulate what was wrong in order to get the help she needed. Maybe she didn't want to eat for a few days because she didn't like the food. Maybe she had a stomachache, and couldn't say it. When she stopped eating, they decided to spoonfeed her. Unlike toddlers, once my mother was spoonfed, it became a one-way street. No one tried to get her to try to feed herself again. Most patients with Alzheimer's have a slow and gradual decline. Why would they assume that she would get better when that goes against the trend of the disease?

I find this fascinating, not just because my mother got better, but because the nature of assumptions. It wasn't until someone gave my mother a spoon again did they test if she could feed herself.

Surface Tension

While I was in Ohio, I visited one of my closet friends from high school, Betty. We went to a coffee shop after dinner and talked for about two hours. I saw her in January when I visited Ohio, but we hadn't really talked since then. Betty has a job, two young children and a husband who travels. Between her limited time and a three hour time difference, it isn't simple to keep in touch.

I talked about my life; she talked about hers. Betty is everything you could want in a friend: funny, empathetic, a good listener, caring, and intelligent. She asked me how I was doing with my mom's illness, my knee, and losing the School Board election last fall. She asked how my dad was coping with my mom's illness and his subsequent loneliness. She asked about Jack and how we were recovering from his betrayal that I first learned about two years ago. She asked about Claire Adele and the Boy. I talked about dealing with the Boy's reorganization of his teenage brain and his frustrations with friends. While the Boy is generally pleasant, he is capable of epic mood swings. As my friend Sarah says, "The Boy has a large emotional range." Yeah.  And it is awful to be on the receiving end of his tantrums.

As we were talking, I didn't think I was being excessively whiny or complaining. I was more or less giving her an inventory of my life, as we commonly do when we haven't seen each other in a while.

"How is the job search?" Betty asked.

"It has been on hold since the knee injury," I said. My daughter's piano reminded me of the emotional and physical energy required for healing. It is one thing to continue to work at a job you already have when you are injured; it is another thing to look for a new one while recovering.

"What about getting back into education?" she asked.

"The entire new School Board except one director campaigned against me," I said. "I have no clout with that group. I can't return to advocacy in the current environment. Nor do I want to. I decided to go big or go home when I ran. I lost, so now I am going home. I can't go backwards. It is really difficult that I spent nearly ten years in that arena and I really can't go back."

"Have you looked for a job at the university?" she asked. She works in a university setting and she knows we are close to UW.

"There was an opening for change management position to support the new payroll system roll out," I said. "I applied for that."

"You sound perfect for it!" Before kids, I had worked in Change Management.

"I didn't hear anything back," I said. I didn't tell her there were probably 300 other resumes that came in for that job.

"Oh," she said. I didn't tell her about the other half dozen jobs at the university I applied for. Betty paused.

"How are you managing all of this?" Betty asked.  Translation: Wow, your life is in a bad place.

I imagined myself being a tightrope walker being unaware I was 300 feet in the air, and then having someone tell me. I looked down and saw the people looking like ants while I was floating above them and freaked out. I thought, She's right. This is really hard. How am I coping?  

Betty is a dear friend and meant no malice. Her only fault was being empathic, which is the opposite of a fault. I have other empathetic friends, but this was a high density conversation about all that is going on in my life. When she asked, "How are you managing?" the surface tension which was keeping the liquid from overflowing burst. My cup was overfilled, held together by exceptional laws of physics. When the tension was released, my emotions poured out, not at that exact moment, but slowly: when I got back to my dad's empty house, when I was flying home, when I went to dinner Saturday night with Jack and the kids and the Boy decided to have a snit fit which then expanded into full blown tantrum by the end of the evening. By Sunday, I was a wreck.

It is a minor testament to resilience that I could manage to keep moving and maintain a reasonably positive outlook. At the same time, a little pessimism doesn't hurt. It is what inspires and motivates us to makes changes. Okay, I can't end on this Pollyanna note. I want to say my life is a mess and I need to clean it up, but sometimes life is just messy, and there are things that can't be cleaned up. I can't change my mom's situation. I can't go back and re-run the School Board election. I can't change that I have a teenage son who is at times my favorite person in the world and other times my least.

While on the stationary bike this weekend, I read Roz Chast's Can't We Talk about Something More Pleasant?* It is her graphic novel memoir about her parents' slow deaths. She had no control, but she could collect her insights and write them down.  I laughed in recognition when she wrote and drew "The Aisle of Tears" which sold adult diapers, adult wipes, pureed food, and other things my mother needs. She talked about the dining room at the Assisted Living Center being like a high school cafeteria with its cliques and unofficially assigned seats, which I also saw where my mom now lives, but on a much smaller scale.

Reading Chast's book made me realize that there are parts of life that just suck, and there is very little we can do about it except get through it. There is no shortcut through suffering: it is part of the human condition. Reading her book, I felt like I was in a conversation with a friend who was guiding me through the wilderness of aging parents. For now, my experience with my parents' aging is not up close, but from a distance. She turned her and her parents' suffering into art, a story that resonates with people like myself who are going through something similar.

Sharing coffee with a friend, telling her how I feel, that is good way to make it all a little more bearable.


* I used to like Roz Chast but now I love her.

Dad

Happy Father's Day, Dad!  Better late than never.

In addition to being a dedicated father, my father is a dedicated spouse.  He is working so hard to take care of my mother during her decline into Alzheimer's.  My biggest fear is not that something will happen to my mom -- I've read about the downward spiral and am expecting it to be bad.  Death by Alzheimer's is a slow death by a thousand cuts, with minor and major insults and injuries along the way.  This weekend, my mom got in a car and drove off to visit her friend.  She isn't supposed to drive, but she did.  She was lost for an hour, which caused panic in my father.  No one was hurt and no damage was done except to my father's nerves.

My biggest fear is that taking care of the woman he loves will kill him, wound his heart, break his spirit.  What they were looking forward to as their golden years will be much less, marked with challenges and difficulty.  I hope he takes care of himself.