“…and now
the thought stark and irrevocable
of being here without you
shakes me…”

–Wanda Coleman

I first knew something was really, really wrong with my mom in the summer of 2009 when she drove my young son and me to Drift Creek Camp for a weekend retreat. She seemed to be in a trance as she tailgated other cars on the highway. She took corners too fast on the winding, gravel-lined road leading up to camp, even with a cliff on the other side. Her recent backseat driving when I was at the wheel had been a point of tension for us. Consequently, I actually feared saying anything when she was driving so dangerously that day. I used my son’s inclination to get car sick to ask her to slow down.

We shared a room at camp. All night she snored so loudly that I had to use ear buds to listen to music in an attempt to sleep. Sometimes her breathing would seem to stop and then suddenly start again in a great gasp. Aha! That was it! My mom simply had sleep apnea. That would account for her trance-like state when driving. That would also explain why she seemed so uncharacteristically depressed all the time the past couple of years and didn’t talk very much anymore.

When we got home, I emailed my dad and told him I was worried about Mom. She never checked the email, so I knew she wouldn’t see it. I asked him to make an excuse to leave the house and to come see me. After I told him my suspicions, he shared with me about TWO minor car accidents she had been in–both her fault–that she had asked him not to tell me about. He agreed to tell her that we feared she had sleep apnea and was not safe to drive until she had been treated for it.

A sleep test confirmed that she had sleep apnea. She began to wear a C-Pap at night. The sleep specialist told us that if her behaviors did not change after three months, we needed to see a neurologist. After three months she only seemed worse. Dad let her drive once after she had been wearing the C-Pap for a while. If he had not been with her, she would have caused another accident. The worst part was she seemed completely unaware that she’d nearly side swiped another car when attempting to change lanes without looking.

A neurologist at OHSU diagnosed Lewy Body Dementia in the spring of 2010. A brain autopsy after her death proved it was not that but frontotemporal dementia. It didn’t really matter. Treatment and outcome were the same. Terminal with no real cure. My dad had briefly read about it and clamped onto a sentence stating people could live up to 20 years with LBD. He thought surely there would be a cure for it by then. However, I had read much more about it and knew that she was more likely to die in about two years. Those two years yawning in front of us were going to be hard. She was going to completely lose her ability to talk, walk, bathe herself, dress herself, feed herself, brush her teeth, use the toilet. My heart shattered on the way back from OHSU as my dad cheerfully said how relieved he was that it was only LBD. Oh, Dad. You have no idea.

He soon learned. As she declined, his grief grew exponentially. He was scared and desperate and beyond sad. He was a mess, sobbing every time I saw him–which was several times a week. Though my own grief felt bottomless, I was forced to be strong for him. He spent his time reading about dementias and potential treatments. Time and again he asked me to call OHSU to ask the doctor about a treatment he’d read about or a possible alternative diagnosis that was curable. He didn’t understand that I couldn’t just call up a neurologist at OHSU for a little chat. Appointments were months apart. He would have preferred weekly, even daily visits. She began to fall more and more frequently. Every phone call was a crisis. My heart skipped beats whenever the phone rang.

After a year, she was no longer safe at home. Twice Dad had found her in the back yard in the middle of the night. Hard of hearing, he was wakened only by the motion sensing light in the back yard. She was looking for something, but she was no longer able to find the words she needed. Once she said she was looking for her conscience. When my sister stayed over night while her home was being renovated, she caught my mom trying to leave through the front door at 1:00 in the morning. Mom clearly needed to be in a safer place. Dad had not woken up that time, despite the bed-shaking device he’d installed to alert him when she left the room.

Mom spent her last year at Farmington Square. At first Dad visited her for every meal and got her ready for bed at night, leaving only after she was tucked in. I changed my job hours to part-time, taking off Fridays to spend with her. I normally visited another time on the weekends and on some evenings, averaging about three visits a week. My mom’s sisters and a brother visited often, especially Lorene who was there probably twice a week at least. Her church family saw her often. No other resident at Farmington Square had as many visitors. I put photos of her in her room that showed her healthy and smiling so that her caretakers would see the real person inside this body they bathed and dressed.

People asked me all the time “How is your mom?” I hated that question. I never knew how to answer because the answer was horrible. “She’s dying, and there’s nothing we can do.” Not exactly the way to answer in a polite conversation. If I answered truthfully, I couldn’t take the distressed look on their faces. I learned to say, “She’s doing as well as can be expected.” They’d smile, pleased with my response, only hearing “she’s doing well.”

Sometimes well-meaning friends who’d visited her would tell me they had a lovely conversation with her. I know they meant to encourage me, but it only made me feel worse. Really? She had a conversation with you but not with me? For a while, Mom could seem to be fully present in a conversation. She could still say words and nod her head at appropriate times. What people didn’t catch on to was that she no longer had her OWN words. She parroted. If you asked her, “Are you feeling OK today, Thelma?”, she could answer, “Feeling OK.” If I said, “I love you”, she could reply, “I love you.” But once my son said, “I love you, Nana” and her response was the same: “I love you, Nana.” By the end of her life, she could no longer form any words.

During that time, my grief leaked out at odd times. In the shower, while doing dishes, in the car. My son Isaac often saw me crying in the car. He learned to simply ask, “Nana?” I’d nod, and he understood. This happened frequently over those last two years. It still happens. But I had to learn to contain my grief. I had a dad who was falling apart and needed me to be strong. I had students to teach, papers to grade, dinner to cook, homework to help with, vacuuming to do. I learned to shut my tears off so I could function.

I described my sorrow as “grief interrupted.” I had already lost my mom in a sense. She’d gone away without me realizing it until it was too late. But yet she wasn’t all the way gone. I could see her, though she no longer had facial expressions. I could talk to her, though she couldn’t really respond. I could hug her. She could still hug me back as long as I held her up. I couldn’t fully grieve my loss because she was still right there in front of me though in altered form. Also, to look into that abyss for too long was terrifying. I couldn’t see the bottom and was afraid if I looked for too long, I would get sucked into it forever. I paid a grief counselor to help me through it.

Once when I sat with her at dinner, stroking her throat to encourage her to swallow the bite I’d just fed her, I began to cry. We were alone in the dining room by then. Crying felt like a luxury I couldn’t often indulge in. But now no one was there to see and there was nothing else to do but wait for my mom to swallow. I surrendered and let the tears flow. When I was done, I grabbed a dirty napkin another resident had left behind to wipe my face. I then got up to get a tissue from her room to blow my nose. When I returned, a staff member who’d secretly watched me crying, had left a box of tissues next to where I’d been sitting. Such a kind gesture that makes me weep even now to remember.

When hospice became involved, I actually felt some relief that her end was near. I don’t feel guilty about that. She and I were very close. She was my best friend, my closest confidant, my greatest cheerleader. I loved her fully, and she knew it. She loved me fully, and I knew it. But this was no way to live. Not for my dad whose health was dramatically declining from stress and from injuries sustained trying to catch her when she fell, not for my husband and sons who I often neglected while caring for her, and not for me. Most of all, not for my mom. Her smile, her laughter, her words, her ability to enjoy life were gone years before her body was gone.

She died with my Aunt Lorene, my dad, and me by her side on June 15, 2012. She was only 68. I promised her I’d take care of my dad, my sister, and her grandchildren. I told her that if she saw a light, she should go to it. That I loved her and that I knew she loved me. That she was a great mom. I watched as space grew between her breaths until they stopped. My vibrant, compassionate, brilliant mother was gone. I looked up at the ceiling and blew her kisses because I’d read accounts of near-death experiences which described their sense of hovering overhead looking down at their bodies.

At her funeral, I did not cry.  People who watched me smile with dry eyes may have assumed wrongly that I wasn’t sad. Nothing could be more wrong. I was shattered. But I’d been shattered for the past two years. Now I had to pick up the pieces. But I would do that after the funeral was over and I was alone. As I had been practicing for the past two years, I set my grief aside so that I could function.

I recently read the best description of grief I’ve found that describes what the past nine years have been like for me. When you lose someone (or something else you value), grief is like a ball in a box with a pain button on the inside. At first the ball is so huge that it presses on the pain button all the time. The pain is constant, fully present. In time, the ball shrinks. But sometimes it bounces and hits the button, and at those times, it hurts as sharply as it did at first. And though the ball shrinks, it never goes away. When I stand at the edge of the abyss of my grief and look down into it, it still takes my breath away. I can’t see the bottom.  But at least I no longer worry about falling in.