Navigating the end-of-life journey is something that so many of my friends have been doing. We're the "sandwich" generation. It's what we do. My mother's decline has not been linear. It's a series of jagged degradations of physical and mental abilities. She's not merely slipping away. It's not neat. It's not tidy. And right now, it's not even peaceful.
My mother has Parkinson's Disease and related dementia, what is now referred to as Lewy Body Dementia. For years we'd been worried about her continued elevated level of crazy behavior. She's always lived by her own set of rules and within her own special reality, so it's hard to really determine when her normal crazy became dementia crazy.
We were powerless to step in and "help" because she was so resistant to the idea that she needed help. And she was tricky. So tricky that she kept her doctors and the DMV fooled into thinking she was okay, or at least not too bad.
It took until the point that we were literally able to kidnap her to get her into our care. And, only a few months later, we tricked her again and locked her up in memory care. That was the worst day of my life, by the way, tricking my mother and locking her up.
The goal and the mantra over the next two years was assuring that Mom was comfortable and content. And she was until only a few days ago.
That's when the screaming began. The screaming that makes me feel powerless. Is it pain? Is it fear? I'm the person who is supposed to be in control. If something needs to be done, I want to do it. To fix it. To make it right. I need my mother to tell me what's wrong so I can fix it.
After a day at the ER, looking for something to fix, it was obvious that we've reached the next stage. At the memory care facility, the staff often uses the term "part of the process." I don't know what else to call it. Dying, I guess.
Hospice has now set up shop in my mother's room. Everyone has been fantastically supportive. The staff of Sunrise of Sacramento, everyone at Kaiser, Blossom Ridge Home Health and Hospice, Rabbi Nancy. I have so many new phone numbers and names in my phone now of people who have met with me to provide guidance and comfort. After observing a flicker of awareness when I held up the phone for my brother to talk to her, I got the idea to seek out a rabbi. I am not religious myself, so it's not something that occurs to me. I don't know why, but I knew that I needed a rabbi for my mom, and I sought out a visit from Rabbi Nancy from Congregation Beth Shalom. I'd seen her once at Purim celebration. I knew that she would be wonderful. And she was. I asked her if she knew a prayer. This is a very stupid question to ask a rabbi. What I meant was, "Do you know the right prayer to comfort my mother?" This is also a stupid question to ask a rabbi. I plead emotional exhaustion.
Rabbi Nancy Wechsler went into my mother's room and sat by her bedside. She has a beautiful singing voice and got up close to my mother and comforted her with her beautifully offered prayers. Prayers that were familiar even to me. Prayers that comforted my mother and brought to her a look of serenity and peace. Prayers that made me feel close to my Jewishness. Prayers that I saw, by the look on my mother's face, made her feel close to her beloved parents and grandparents. I hope I can find a Rabbi Nancy when the time comes to have a memorial celebration in Los Angeles. Does she travel?
I'm taking it one day at a time. That's what everyone says to do. I continue to make plans for work and travel but always with the caveat that I don't know what tomorrow will bring. It may be the same. It may be different. I can't control that, but I can hold up that spoon and hope she opens her mouth.
