Back to Stories
Remembering The Ties That Bind: A Daughter Copes With Her Mother's Dementia
April 19, 2018
Remembering The Ties That Bind: A Daughter Copes With Her Mother's Dementia
Bozeman psychotherapist Timothy Tate helps a client work through the pain of watching her matriarch's memory fade
She came through the Blue Door of my clinical therapy practice carrying the load of unrequited guilt for the way in which her mother who, under her care, died a disturbed death.
Her mother’s dementia, like Montana weather, stormed through her home, unbidden and treacherous. How could a woman whose warm love showered over her for so many years slowly become a cold, angry woman as an elder?
Such is the agony of an inter-personal relationship when one party holds onto memory and another loses it. Is there a parallel that can be drawn to a community, too?
Like other stories of hardship, courage and decisive action, her call to write about this experience came to her through a dream.
“I cut the roof of my mouth on a chip. I didn’t think much about it,” she said. “That night I woke up with my mouth on fire. I had been sleeping hard, and my mouth was so dry. The cut throbbed. The first thing I thought was why does my mouth hurt so bad. The very next thought was about my mom.”
This brought deeper reflection. “At the end of her life, as her mouth was open and she struggled for breath, her mouth must have been so dry and hurt so much worse than this,” the daughter wrote. “All I could think was that I did that to her. I caused her pain. I had not thought of the sponges used to wet the inside of someone’s mouth until day two of her last three days. Why hadn’t I thought of it earlier in her fight to die? I broke down sobbing. Keening really. Every part of me hurt for my mom and what I didn’t do for her.”
Eventually, the daughter drifted back to sleep. “I dreamed that I was writing about my guilt. How it was so heavy a burden to carry. In my dream, I was sitting with you, Tim, in your office. The room smelled of cedar. The fire was warm. I was safe behind the Blue Door. I was writing about dementia, the cruelty of it, the guilt that I carry about my mom’s death, and my role in it. In the dream, you were writing about how I could let the guilt go, why my shadow seemed to fight to hold the guilt rather than let it go, and how I could forgive myself. I had such a sense of trust and peace. I so want to forgive myself.”
I cannot begin to explain how the psychic pathways of our species sometimes appear to converge, whether as conscious thoughts or via the mysteries that expand our comprehension even when we are not awake, but navigating the internal state.
The daughter went on. “I woke up in the morning and, remembering my dream, thought about how an article about my experiences with dementia, guilt, and how you, Tim, have guided me through this could possibly help others that face similar suffering.”
° ° °
Clients sometimes tell me that they remembered a dream and that I will love it.
What I take away from this is that this dreamer has tapped into a meaningful if not transpersonal story that registers not only with them but others as well. Do we all wade in a similar collective memory?
So many dreams do the unbidden work of keeping us sane in a world that appears lost and confused. These compensatory dreams typically occur in our first dream cycle, some ninety minutes after we are asleep.
But this dream she shared was an early morning dream where the brain, rested from its assistance as an aid to sanity, goes deeper into, what we might call, our mind and serves up a clear message meant to advance our maturity.
The message she saw in her dream allowed her to take the next step in her healing process and summarize her struggle to care for her mom during the transition from a loving woman into one struggling with dementia.
° ° °
With my client’s permission, the following is her story: “According to the World Health Organization, it is estimated that 50 million people worldwide have dementia, with the most common form being Alzheimer’s disease, and 10 million new cases are diagnosed every year. If you or your loved one is suffering from this disease, I am sorry.
I am not supposed to say sorry anymore. But I am sorry about this.
My mom had vascular dementia. It is a wicked disease that slowly takes away your dignity. That’s an important word, dignity, for dignity relates to how we treat others and how we, when we are vulnerable, hope to be treated by them.
In 2006, we started noticing my mother’s forgetfulness. We were concerned but not worried. We laughed about having to find her keys or her glasses for the fourth time in a day, but as time progressed, the forgetfulness progressed, and we stopped laughing about it.
We tried applied kinesiology, speech therapy, light therapy, vision therapy, computer programs, modern medicine, and every herbal medicine available for memory loss known to mankind. Nothing helped. She was slipping away. In 2013, she was declared mentally incompetent. It wasn’t until the spring of 2016 that I had full-time care for my mom.
My aunt and I looked after her while juggling our own lives filled with kids and work. I didn’t know how to do it any other way. My mom was my best friend, my biggest fan. She loved me unconditionally, gave me life and more support than a daughter could ever hope for. I was one of the lucky ones.
Over the course of her dementia, my gentle lodestar became violent. I was the primary recipient of her violence until one day when she grabbed a caregiver’s arm and wouldn’t let go.
I was able to get to the house quickly as I lived next door, and in the process of extracting my mom, her adrenaline high, she clearly asked to me to end her life. She wanted out of her hell. I didn’t stop crying for days.
"I was able to get to the house quickly as I lived next door, and in the process of extracting my mom, her adrenaline high, she clearly asked to me to end her life. She wanted out of her hell. I didn’t stop crying for days."
I was my mom’s designated Health Care Power of Attorney. It was a gift as it demonstrated the ultimate trust my mom had in me, and a curse as I was faced with a decision for my mom that I was not sure I was strong enough to make.
I am fortunate to have a very close relationship with my dad, a physician, who was able to provide advice and support for me and my mom even though my parents divorced long ago. Conversations with my dad have prepared me for his end of life plans as we watched my mom deteriorate. He wants no life support, no extreme measures. My mom and I had many conversations about what she wanted too at the end of her life. Similar to my dad, she wanted no life support, no extreme measures.
My mom did not remember to drink water in her demented state. You could hand her a glass of water and half the time she would put it down or push it away not knowing what it was. The other half the time she would take only a small sip.
My mom was alive because of the caregivers who throughout the day brought water to her lips and encouraged her to drink. I made a decision for my mom under the guidance of my mom’s physician and support from my dad. We would no longer assist with water. Even though I had guidance, the decision was mine, and I had never felt so alone.
I met with hospice. They said they would be there for us to manage her end of life care. My mom had headaches, joint aches, stomachaches, constipation, and dry mouth. She became more and more agitated. Water was always available. She just didn’t know how to drink it.
After we changed her care plan, my mom became so violent you couldn’t get within a foot of her. A hospice nurse came to provide medications to calm her. The nurse explained the medications, their doses, and the dosing schedule to me so that I could administer them. Then, he left. I cried so hard I thought I would shatter.
I did for my mom what she asked; I did what I know she would have done for me had I been the one asking. But every dose of medication I gave her killed a small piece of me. I started to apologize with every dose. Medication every hour, apology every hour.
If you are not exposed to death, it is startling. No one warned me about the gurgling, the struggling to breathe. I had believed my mom’s doctor and my dad that death by dehydration is not a painful way to die. I had believed that hospice would be there to support us during my mom’s end of life. It was beyond painful, and hospice only stopped by once a day, leaving me, my aunt, and a caregiver to struggle through this process. Medication every hour, apology every hour.
The night my mom died, I was lying in bed with my mom’s head on my shoulder telling her a story. I was holding her hand. Her labored breathing shifted. She took two very quiet, calm breaths and let go. I shattered into a million pieces, but my mom was free of her demented body. Free.
It seems as if it took me almost six months to just pick up the pieces of me and another six months to slowly start to put myself together. But the pieces of me didn’t fit back together as they were before my mom died. I apologized to my mom every day that first year. I was leveled instantly by a smell, a noise, a flash of a memory that would drop me to my knees in wracking sobs. How does one carry the weight of making a decision about life or death for the person they love?”
° ° °
We have sat together with this quandary over the last two years struggling with not only her survivor guilt but what it means existentially to hold the fate of a beloved mother in her hands. It seems that no matter who is on your care team, be it hospice, relatives or friends, there comes a moment, where she was all alone with her mom and then she was gone. No more gurgling, lashing out, pleas, administration of medications, but rather a softness of an effortless exhale bidding farewell.
Guilt is Medusa-like in its manifestations, snarling snake hair ball of self-incrimination, what ifs, regrets, admonishments and crippling sadness. It seems like if we face it directly, like unaware heroes did with Medusa, you turn to the stone of inadequacy. Negotiating the reach and entanglements of guilt begins with how one winds down the “I am so sorry” narrative. One of the tar pits of the human psyche is our socialized demand to be contrite, to explain, to apologize, to defend, to justify our choices and attitudes concerning a complex human condition playing out in our lives.
Is love really never having to say sorry or is sorry the mea culpa mantra of a woman struggling to contain, to put into some context, choices made in the maelstrom of a deteriorating medical condition everyone knows is going to end badly but where only one woman is left being her mother’s keeper. It’s not like this person is some needy helpless woman, au contraire, she is fiercely independent, a professional, mother of two kiddos, friend to many and is dedicated to balancing health and fitness as a big part of her lifestyle. She, like many folk in my practice behind the Blue Door, is a woman others hold in high esteem, leaders in our community.
You see, there really are three levels to reality: literal, psychological, and mythic. One requires actual literal decisions and consequences, one is where we emotionally find meaning or not with our actions, and one is where we have the ritual or ceremony option to complete what otherwise is unfinished with the first two levels of reality. Although organized religion has assumed authority in the mythic realm, there are ways to access that form of power independent of religious doctrine or practice. And so it was in this case. What kind of ritual could she perform that would assuage her guilt and provide a release to the stubborn pain of her mother’s ragged dying?
The “agony and ecstasy” of life demands we rise to the occasion of the particulars of our life story that take us to our limit and beyond. There is no playbook for life's most challenging moments. There is no authentic map for the invisible world of grief...
The “agony and ecstasy” of life demands we rise to the occasion of the particulars of our life story that take us to our limit and beyond. There is no playbook for life's most challenging moments. There is no authentic map for the invisible world of grief, loss, and transformation. It must be personally discovered during the heat of battle. It makes sense then to seek our own depths before and during our call to action. My client’s qualities of courage, selflessness, wonder, love, and steadfastness are intact because she was wise enough to know that we can always use a hand when facing the heat of life’s irreconcilable paradoxes.
I will dedicate another column on the actual ritual that we co-created to complete the task of adjourning the past. Suffice it to say that it involved a really hot bonfire, a sacrifice of a treasured object, and roasting marshmallows.