Most of this story happened in 2013. What followed in 2014 is a different story.
There was a day I remember helping my mom. She was ill, I think, though she couldn’t tell me about it because she had lost her ability to speak from dementia.
As she slept in bed, her nose was bleeding. You likely haven’t seen an infirm person in bed with a nosebleed, so I’ll just tell you: it looks like a crime scene. I tried to help her out of bed, but she is bigger than me, and she was frail, so we sat there with me sort-of propping her up, and both of us surrounded by a variety of body fluids.
We sat together for twenty minutes like that, and as I wiped her face and kissed her forehead, I felt our roles change. I took the role of the parent, and she became like the dependent child. She needed help like a three-year-old child, and I could do that. I already had two children, and I was good at taking care of them. I could wipe faces and do laundry, I do that every day. I let go of my role as a daughter.
It was better, actually, to feel that shift toward taking care of my mom. I had helplessly watched her go through a dozen years of debilitating loss. My sadness felt secondary to her first-hand experience, and feeling like I couldn’t talk about the loss of a person who was technically still here and needing care, I swallowed my grief and sank into dark depression. I thought I had experienced a splinter compared to someone who had lost an arm. I developed a fine collection of coping methods, but caring for her was something helpful I could do.
Dementia is the experience of hundreds of losses, in slow motion, with no relief in sight. My mom couldn’t speak, drive, or play with her grandchildren. She couldn’t control her facial muscles to make a smile, and that saddened her because of how it affected other people.
At home she could no longer be by herself. She walked around wearing only one shoe. She wanted to take walks outside in 100-degree weather wearing winter clothes. She walked constantly in laps around the house.
I got an ID bracelet for her to wear since she was prone to leaving the house to go walking by herself. Three days later I received a phone call from a stranger who helped her and saw my phone number on her bracelet. My mom had fallen on the street and needed emergency care. Without the bracelet, she would have been Jane Doe in the hospital. I couldn’t leave my phone after that; I carried it constantly.
The kitchen was safety-proofed, and the refrigerator door locked because she would get drinks, not remembering that she had finished her drink five minutes before. She ate without discernment things that were not food: a grape stem, a corn cob, pieces of paper, even the kitchen sponge. I hid the push pins.
Without concern for safety, she tried to exit a moving vehicle. She called 911 twice in a week for no reason—the police showed up both times. She pushed the alarm at the memory care center where she visited a few days each week.
She didn’t like it at the memory care center; she thought it was boring, and she wanted to be at home. My dad asked what she thought she would do at home, and she replied, “laundry.” To her, doing the laundry meant stopping and starting the laundry cycle over again by pushing the buttons. It took all day to complete a load of clothes, unless I guarded the washing machine.
Caring for her was different than caring for a child, certainly. It was a remedy and a privilege for me. The intimacy of caring for a dependent adult felt like a sacred place. It was hard, though, and I did work that I didn’t think I was strong enough to do.
I was glad when my dad decided to move her into the memory care center full-time. He had always been my mom’s primary caregiver and carried the majority of the work. I wasn’t worried about her, I knew she would be fine; I was worried about my dad. I felt relieved. He felt devastated.
Ironing the name labels onto her clothes seemed like sending my kid to camp. She had a nice room with a new bedspread. The workers were friendly and supportive.
A few weeks after she moved to the care center, I was trying to get my life back to normal, but I couldn’t because everything changed.
I was diagnosed with cancer in March 2014. It started in the breast and spread to several places in my body, attached to my bones. I was 36 years old, and my children were 7 and 4. When the doctor told me the news, I thought of my mom and said, “Well, I’ve seen worse.” I didn’t cry. I was so tired of being sad.
I didn’t tell my mom I had cancer. I didn’t know if she could understand, and I imagined her turning away to go for a walk. I knew she wouldn’t be able to respond in the way I wanted. I wanted her to help take care of my kids and cook for me during chemo. She would have helped me, if she could.
Although she couldn’t help me, I realized she gave me something greater: she showed me how to go through something hard by her example.
(More details about my cancer treatment will follow.)