I’d like to be able to tell you about my mother in a way that enables you to really see her and who she was. I’d like to tell you about all of her antics in the 1970’s---her 1965 powder blue Cadillac convertible—how she would drive it down the street with a Benson and Hedges clenched between her teeth to go “shopping”. How she loved fashionable clothes and wearing hats, and how she became unglued and became a sort of “Mrs. Robinson” for a period of time when she was in her early 50’s. I’d like to be able to share with you all that was good and all that was sad about her, but I can’t. I can only show you what it felt like to be her daughter, and what it was like to lose her bit by bit to a disease that mangled her brain, and inexplicably forced me to distance myself from her when she probably needed me the most. 

8 Years and 10 days  

When my 82-year-old mother died in late 2006, I thought that I would feel a sense of relief. Finally, everyone’s suffering would come to an end. In fact, I had prayed over the past few years that she would die, but I grappled with this too. To pray for her death was contradictory to everything that I secretly desired. What I really wanted was to have my mom back. I desperately needed for her to emerge from the dementia that had stolen our shared history, and our mother/daughter bond.

To lose my mother to dementia was a kind of living grief. When I went to visit her over the last couple of years of her life, I was aware that our connection would be limited, so I tried to keep my expectations low—which was almost impossible to do.  Remaining hopeful in the face of this stark reality I sat with her, silently pleading with her to know me and see me as the daughter that she loved, but she couldn’t respond. She could only sit and stare at me expressionless, or mutter a few nonsensical words.  

I usually left those visits full of tears, and was forced to start grieving all over again. “She’s gone, and you know this”, I told myself. “If she could tell you that she loves you, you know that she would”, I counseled myself with inadequate reassurance. As long as she had a physical presence on this earth, I couldn’t let go of my childlike hope that she might come back to me.

 I tried to look past my mother’s illness to see the woman who I used to know. Like most mother’s, unconditional love was never a question, and even if she disagreed with a decision that I had made, she was inevitably there to dress my wounds when things went wrong, with no judgment or shaming. But it was hard to look past her blank stare. It was difficult for me to set aside my own grief and disappointment to be there for her, to give her what she needed, even if it was only to sit beside her holding her hand. 

Her physical unraveling was a shock too. She had always been so attentive to her appearance down to her clothes, shoes, make-up and hairstyle, and now there was hair growing out of her chin that she wouldn’t allow you to pluck. Now her hair was gray and unkempt, now she was dressed in an assortment of powder blue and pink cotton sweat suits with white socks and Velcro shoes. Her external appearance was now in lockstep with the chaos that was going on inside of her.

 I started to notice that something was subtly changing about my mom in 1998. She had lived in the same town for 50 years, and when she started losing her way along roads that she had driven down countless times, I found myself frustrated to the point of irritation. “C’mon Mom”. I said to her on one occasion, “You know where you are!” I had no idea at the time that something was going terribly wrong inside of her. In fact, she had gotten lost in her very own neighborhood, only a few blocks from her home. 

These changes were just the beginning of an 8-year illness that ended in a complicated decision that raised questions about quality of life, and when to pull the proverbial plug.

My mother’s decline and illness can’t be fully understood without revealing what happened to my brother. In 1999, he suffered a traumatic brain injury. He lived for 7 months, first in a coma, then in a devastating vegetative state. My mother, in the early stages of a dementia still undiagnosed, was inconsolable. She clung to the idea that he would recover and come back to her. She drove to the hospital every day to sit by his side-- a dutiful and loving mother who was losing her son.

When we removed my brother from life support, he passed away within 12 hours. We knew that he was dying when we made that decision--even mom knew. Still, when we made the decision to let him go, she shook her head in disbelief. “What?” she cried out, and then fell silent. She couldn’t see that he had been lost to her that terrible day 7 months earlier. To her, this decision was complete betrayal. She was still holding on to hope that he would emerge, perhaps if only to say the things that she needed to hear before she could let go.

Ironically, I eventually came to understand how she felt.


My brother’s death dealt my mother a blow that she was unable to overcome. Now she was a “double winner”. At age 78, depression descended upon her like a pall, and the dementia that seemed to be only peripheral at first began to have an effect on everything that she said and did.  

She had previously been a person who enjoyed an ice-cold beer on a hot day, who reveled in driving her Cadillac convertible---looking sharp and self-assured, a person who could make anyone feel welcome and embraced with just a smile—that person was quickly slipping away.

After my brother’s death, I witnessed a mental decline that would take my mother from me bit by bit. I felt compelled to emotionally distance myself from the only person that I knew who would never abandon me. She had always been my emotional safe house, and it was hard to accept the reality that she could be sitting right in front of me, yet be completely unavailable. I had to disconnect on some level---I felt that it was the only way to cope with such a cruel loss. It just hurt way too much.

My mom was losing her ability to do simple things, like use the toilet. One afternoon when visiting her at her home, knowing that she had to pee, I took her arm and walked her into the bathroom. After a minute or two of coaxing and pleading with her to sit on the toilet, she finally just stood there and peed all over the bathroom floor.

I get it. My mother has dementia, and I have to expect these things.

I watched her as she forgot how to cook and take care of her own basic needs. I watched her as she hallucinated, and became delusional. I watched her as she stripped off her clothes and flashed my husband. I watched as she was stripped of her dignity.

It was a lost opportunity to let our mother go quietly and quickly, but faced with the sudden reality of her physical death, the base emotional reaction was to save her life---to keep her with us because we were afraid to let her die---afraid of enduring that final blow. 

The doctor at the hospital had said that her prognosis was grim, and that all we might hope for is for her to remain bedridden, if she survived at all. This was almost too much to wrap my head around. She would have died if an ambulance hadn’t been called, and now we were being told that she probably was going to die anyway. I was angry and heartbroken. 

My sister, who held the power of attorney, called a trusted hospice program, and my mother was transported back to the care home where she had lived and been cared for since 2003. 

Of course there are always other options. She could have been sent to a skilled nursing facility where they would have inserted a tube into her stomach that would have fed and hydrated her. Maybe she would recover a little. This was a consideration, but the questions about the quality of her life were inescapable. There was a slight chance that these measures would improve her condition, but really, it was a hopeless scenario. She was never going to come back to us. 

I arrived home the next morning and went straight to her care home to see her. She was lying in her bed; her face drooped on one side. There was no flash of light or life. Her eyes didn’t open or shut. No sounds came from her mouth. She lay there unconscious, breathing steadily, her heart pumping blood to her organs and extremities. Her body was quite alive, but those things that made her special; her personality and intellect had already been stolen from her by the dementia.

There were moments that I wanted to take her back to the hospital, have them start an IV and a feeding tube, and relieve the excruciating guilt and fear that I was feeling---along with what I perceived as my mother’s terrible suffering.  At times it felt as though we were committing a kind of matricide, but we didn’t acknowledge these darker feelings to each other.  

During those final days I spoke to my mother. I visited her late in the afternoon on the 8th day and I wept, and I told her that I loved her, and I thanked her for loving me. I told her how sorry I was that this was how it was all going to end, and that I missed her terribly. I only hoped that she could hear me, just this once.

She finally died on the 10th day on a Saturday morning at 5:30 AM.