What is heartbreaking? It’s seeing someone you love feel broken. Leaving Mom at her nursing home with my brother last night, and seeing her tear up as we left her at the doorway hurt. Knowing that she feels trapped and wants not to be where she is, and in the condition she’s in, leaves me frustrated and angry.

Mom is the person I admire so much for her strength and determination through the years, from putting herself through college as the first female in the family, on scholarship, working 40 hours a week while completing her degree at IU. She is a caring mom who taught us sports, put meals on the table, and planned our family vacations to include time for swimming as well as the historical landmarks Dad was so interested in. Doing all this even as a young mother getting her Masters degree and after she went back to full-time teaching. An elementary school teacher who cared about her students and taught them well. A singer of Christmas carols interchangeably with show tunes around the house at all seasons. A thoughtful provider of valuable life lessons to me and my brother, typically in the kitchen. She loves people and laughs easily.

When my brother and I were in high school, Dad began to change. We know now he was showing signs of early onset Alzheimer’s disease. Being around Dad was tough, especially for Mom. She opted not to take a trip to Europe with Dad and the church choir, because it would have been too stressful. Her singing around the house stopped. Her first grandson was born in 1991, and he was a cause for joy to her in a difficult time. Even once we moved Dad into the Alzheimers unit at the Franklin home, she was torn with guilt because he wanted each visit to be taken home, and called her to come get him. Dad died in 1995. Mom got help for depression. We bought her a cd player and speakers, and some music returned to the house. Things were looking up, but within a couple of years, she needed heart bypass surgery and retired from teaching. She recovered from that better than ever, and took a cross-country road trip with her sister, seeing the Tetons and Yellowstone, and visiting me in San Francisco. She went with the whole crew of us to DisneyWorld for a week in 1999.
By 2001 she had back pain so severe that spine surgery was the only hope for a pain-free life. I took family leave and stayed with her for 2 weeks after the surgery, but after lengthy recovery, the pain was not gone. When she visited San Francisco in 2004, I rented her a scooter, which was an adventure for her first time driving one – on bumpy paths at Muir Woods.

With increasing pain and limited mobility, we helped her move in 2005 from our family home to one just a block away from my brother. That helped, but the neurologist eventually came up with a diagnosis of Parkinson’s to account for the continuing mobility issues. She began to need a walker. She began to fall when her feet and legs would “freeze” and had some falls that resulted in hospitalizations and rehabilitation.

She rarely has visible tremors, but the signs of Parkinson’s show on her face and the medication and disease itself contribute to hallucinations and vivid dreams. These often make their way into her stories – stories that would seem plausible to someone who doesn’t know the real situation about people, times and places she sometimes describes. Sometimes they got her into trouble, like when she said she stepped away from her walker to go dancing, except there was no actual dance partner.

After part time care at home proved insufficient, we got her into assisted living, hoping that would give her the independence she so wants with the support she needs. It worked for a while, but she is now in long term nursing care. She doesn’t want to be there, and says she gets panicky and packs up her things to leave almost daily, often calling my brother’s house for someone to come pick her up to move.

She wants to be living somewhere else. She wants her independence back – her recliner and TV that she could control with no roommate to consider. Maybe she wants the travel she didn’t get to, as well.

I have never heard her express regret that she didn’t get to do something. Only recently did I hear her say she felt that she ought to have done something during the civil rights movement, and felt badly that she hadn’t taken action then.

She was always adamant about wanting us to live our own lives, and resisted for a long time even taking the step of moving nearer to my brother and his family. That is part of what makes her calls to leave the nursing home so heartbreaking. That and the fact that she feels badly about doing it, in part because she recalls how she felt when Dad did it.

I believe she is at heart an optimist. She created most of her opportunities from an early age and fought through challenges without complaining. Maybe it is that optimistic spirit that continues to fight for her independence and to change her circumstances, even when she isn’t fully grasping reality. She certainly knew that life isn’t always fair, but if anyone deserves a break, she does. From the tears in her eyes as I left yesterday, I think she thinks so, too.

So what do I wish for her on Mother’s Day? A miraculous recovery would be nice. Barring that, some peace so she can enjoy more of the life she has, however constrained. For her family, friends, and caregivers, I wish us all the strength and love and compassion we need to help her on the journey as it continues, however hard the road.

Mom with my brother and me on May 11, 2013

Mom with my brother and me on May 11, 2013