THE LONG GOOD-BYE | Susan A. Martin

In the coldest month of the year, my 81-year-old mother left our home in her slippers and robe to find the nearest neighborhood bar. She was an alcoholic. When bored, upset or in pain, she would go in search of a drink. My neighbor called me in the morning hours of my workday, letting me know he had invited her in for coffee when he saw her walking down our two-way street. This scary event was the impetus to find the first available opening in a memory care facility near our home. She had been on a waiting list for a Medicaid bed for over nine months since my father died. His dying was managed through in-home hospice care, and she complained daily of boredom without my father to care for. They had been married for 50 years. I thought the move would keep her safe, so she could make friends and find new purpose in her daily life.

The coordinator at the memory care facility instructed me to come any time after 3 pm to move in. I thought this was a bad idea, since her disorientation began about that time, and she was always better adjusting to changes in her routine earlier in the day. When I arrived, my first sight was a frail lady sitting in a wheelchair, with significant bruising on her face. The house manager assured me that a settling in period for memory care residents was normal as she showed us to my mother’s shared bedroom. I did my best to stay positive as I helped unpack her belongings.

As the house manager stepped outside for a cigarette, I thought the staff-to-resident ratio was worrisome. I was anxious about leaving my mother in an unfamiliar house with staff who appeared untrained to work with dementia behaviors. The manager gave me her cell number and said I could call anytime to check in on my mom. I appreciated that kindness and yet it was short-lived when my 100 lb. mother now stood between me and the locked door of the entrance and said, “You are a good daughter, don’t leave me here.” She was crying and now so was I. This delicate and fiery woman had used her sad words to pummel me to the ground. I could not bring her home with me. I did not blame her for the words that would haunt me for weeks. I would not want to live in this place either. A week before my father died, he asked me, if my mother would be alright when he was gone. I told him yes. I wish I had known the burden he felt trying to keep my mother safe every day in those last weeks before his death. I now wondered if I had lied to him as I cried in my car on the way home.

When I returned two days later, my mom was sitting at the kitchen table. She had no shoes, no eyeglasses and she smelled; unbrushed teeth and urine. A staff member had said she was having a bad day, and she tried to climb the fence to get out. I searched for her eyeglasses, remade her bed, and helped her shower. Somewhere along the way, I had become the parent and she the child. The staff appeared impatient, flustered by my questions, and argumentative with my mother. This move to memory care was supposed to keep her from wandering into traffic in search of a bar. Instead, I found myself making the same anxious drive to see her, wondering what I would find next.

It was Super Bowl Sunday when my mother fell and broke her hip. The facility administrator called me and stated that mom had packed all her things again and was going into other residents’ rooms. She sounded irritated on the phone. I could hear my mom arguing with another resident in the background about an item being both theirs, and the administrator was yelling at both. It took me 15 minutes to drive to her facility. I found her lying face down on the floor, in front of her roommate’s bed, and the facility administrator sitting on the roommate's bed speaking with EMS on the phone. I smelled urine from her roommate’s bedding. My mother was in her pajamas, hair soaked with sweat, and she was struggling to breathe. I pulled a blanket from my mom’s own bed and tucked it under her side and turned her over. She said, “Oh, that’s better, thank you honey, I don’t know how I got down here.” The EMS arrived and they all quickly left for the hospital. I noticed my mother’s side of the room was packed up again, including the bedding and pictures off the walls. The next day, while she lay in the hospital bed awaiting surgery for a non-displaced intertrochanteric fracture of the left hip, I moved her belongings out of memory care.

My mother uses a wheelchair now and lives in a new memory care since her discharge from the hospital. The hospital social worker was instrumental in finding a safe living situation with adequate staffing trained in working with patients with dementia. My mom still tries to “escape” and will likely never walk on her own again. She often asks where my dad has gone and when he will pick her up. She does not know where she left her purse, or why her roommate sleeps “so damn much.” The staff tell me they enjoy her stories about travel and adventure. I tell them my mother needs a purpose every day, that she has never liked being told what she can and cannot do, and that she enjoys a margarita with dinner.

At the end of each visit, she asks if she is leaving with me. I gently remind her she lives here now. The question still catches me off guard, even though I know she will ask it again next week. Dementia has been a long goodbye, filled with grief, guilt and uncertainty. But being a good daughter is not measured by having all the answers or being able to keep her safe from every harm. It is measured in showing up, again and again, even when it hurts, and loving her through each good-bye that neither of us is ready to say.

Susan A. Martin is a psychologist and medical educator with over 22 years of experience in graduate medical education. Her work explores the human side of medicine and the stories beneath diagnoses. She writes about experiences that shape us and the ways love and connection endure through illness and loss.