Caregiving Reimagined

Who am I? Two days after my mother’s appointment with Doctor Werner, I sat in my car in a parking lot at a Buddhist Temple watching two large chestnut-colored horses stand in a pasture across the street. Hints of a balmy summer to come were present in the warm spring breeze that blew through their mane making them look as if they were in a shampoo commercial. The ethereal flow of their locks and their unwavering stance against the wind reminded me of what facing adversity looked like. I hoped the transcendental qualities of meditation could strengthen my spine and alleviate my sagging shoulders, relieving what felt like an insurmountable weight. In my eagerness, I arrived at the Temple thirty minutes early and had to wait in my car until the building was opened. With nothing to do, other than watch the horses, I decided to call my mother for our daily check-in. Sometimes our calls lasted only a few minutes, other times we could talk for more than an hour. Most often I let her dictate the time, but occasionally I quickly steered through our usual topics of conversation. She answered after the first ring prompting me to get down to business; she was feeling fine, and enjoying the warmer weather, she had a peanut butter and jelly sandwich for dinner using a new brand of strawberry jelly that she wasn’t sure she liked as well as Smucker’s even though it was more expensive, and she was enjoying Jeopardy. There were three new players. I told her I was about to go into a meditation class and other than that nothing was new since yesterday. We both sighed. “Well, okay. I’ll see you tomorrow morning. I should be at your home around 10,” I said just about to hit the end button. “Do I have Alzheimer’s?” she asked. I felt the quivering in my gut reminding me of a hummingbird fluttering and darting about only this time it flapped its wings faster than ever before causing more pain. I hoped my mother hadn’t heard the loud whoosh of air as my breath caught. Closing my eyes, and wishing I could disappear, my head started shaking from side to side, silently thinking no, no, no, not me. Her question was legitimate, not an Alzheimer’s moment. Since her doctor had not told her, my siblings and I decided we wouldn’t tell her either; there must be reasons for not telling patients. It seemed easier to follow the doctor’s lead than blaze a new, unknown trail. Maybe the burden of knowing would negatively impact the quality of a patient’s life. My siblings and I all agreed we should remain optimistic and silent. My heart raced as my mother breathed into the phone, waiting. “Well, you know. The doctor said something like that. We need to wait and see,” I stammered. “Tell me. What did she say?” “You have to take the new medication for three months and then we’ll meet after that.” I took a deep breath, trying to calm myself. Breathe. Breathe. Breathe. What should I say? What should I do? What would happen if I told her? How would it effect her? Would my siblings be mad at me for telling her? As I waited for her to say something, my attention was pulled to the whinny of the horses. They stood with their heads high facing the wind as if encouraging me to do the same. “What. Did. The doctor. Tell you. And Pat?” my mother asked in a staccato voice, one I’d never heard her use before but also letting me know that she was more aware than I realized. “Do I have Alzheimer’s?” I was so conflicted about what I should do that I became inert but my mind reeled at warp speed like a trailer for a movie with only the highlights. There were only two possibilities; lie or tell the truth, both felt ominous. For a moment, I regretted calling her and then was angry that she asked me and not one of my siblings. I was also mad at Doctor Werner for shirking her responsibility. My reel of emotions was short lived as the bray of the horses pulled me back to reality. I understood my mother’s question required something more from me than she had ever needed before and it required me to know who I was. What did I value? What kind of a daughter and caregiver did I want to be? In that moment, I knew I wanted to be a person who was going to show her that she deserved respect. She was valued and loved. Her diagnosis wasn’t going to change that. It wasn’t until years later while reflecting on this conversation that I realized it set the tone for our relationship over the next eleven years. She trusted me and I respected her. She was my mother and for that alone she earned my loyalty but she was more than that. Throughout her care I was cognizant of treating her as a woman who had had a full life and was worthy of all my reverence. I also realized that caring for her gave me the chance to learn more about myself and so much more. It was a rare opportunity and I didn’t want to waste it. She deserved the truth. “Yes, Mom. You have Alzheimer’s,” I said.