When my 82-year-old mother died in 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 “living grief”. When I went to visit her over the last few years of her life, I was aware that our connection would be limited, so I tried to keep my expectations low--usually to no avail. 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 left those visits feeling distressed, 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.
She had been a person with infinite patience, and had a knack for appreciating smaller pleasures. Things that would drive me to drink wouldn’t faze her in the least. While I would sit and complain about having to wait for an hour at the pharmacy for a prescription, or in a long line at the DMV, she would sit and wait calmly, trying to convince me that there was no reason to put off doing things out of boredom or impatience. While I would scarf down my food so that I could hurry along to the next thing, she could sit and ponder a scone and a cup of coffee for an hour, enjoying every bite. I was nothing like my mother, but as an adult I came to appreciate how invaluable these qualities really were. She lived much more in the present than I could have ever hoped to.
I started to notice that something was 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. This was just the beginning of an 8-year illness that ended in a heartbreaking decision that raised questions about quality of life, and when to pull the proverbial plug.
This story can’t be fully understood without revealing the greatest tragedy of her life. In 1999, my brother was injured in a horse riding accident. He hit his head with full force, and 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 her son would come back to her (a scene that would repeat itself a few years later as she slipped away from me). She drove to the hospital every day to sit by his side-- a dutiful and loving mother who was losing her son.
When we finally removed him from life support, he was septic and dependent upon a ventilator. As a family we knew that it was hopeless--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, whose greatest joy was gathering her extended family around her for large holiday dinners, who could make anyone feel welcome and embraced with just a smile—that person was slipping away right under our noses.
Over the next few years, I bore witness to a mental and physical unraveling that would take my mother from me bit by bit. I was forced to emotionally distance myself from the only person that I knew who would never abandon me. My mother 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.
Sure, I’m a grown-up, so I ought to be able to handle it. At least this is what I HAD to tell myself to compartmentalize my feelings. 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, and be able to deal with it.
Why should I be able to deal with it? This is my mother, the person who always took care of me. I watched her as she forgot how to cook. 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. Sure, I can deal handle this. And inexplicably, I did.
Over the next 3 years, I watched as my mother slowly deteriorated physically and mentally. At the time of her stroke in 2006, she was no longer speaking or making eye contact. She had become a shadow of her former self. Her caregivers, who called her “mommy”, had been feeding her and changing her diaper. Toward the end, she spent her waking hours slumped in a wheelchair, unaware of her surroundings, descending deeper into darkness.
When I got word that mom had suffered a stroke, I was on the big island of Hawaii on a long overdue vacation. My sister called and said that mom had been taken to the emergency room. All at once I wondered why. She had an advanced directive, and it was clear--she was a DNR, do not resuscitate. Why then was she being pumped full of fluids and revived? I failed to see the logic in this decision, especially after what happened over the next 10 days.
It was a lost opportunity to let our mother go quietly, but I don’t think that any of us were really prepared for that moment of truth. Our first inclination was to keep her here with us. We were all afraid of what we would have to face when she was actually gone--that blank space where mother used to be.
Worried and confused, I flew home the next day to see mom, and to meet with my sisters. My family gathered at the care home, where my mother was lying in her bed, 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. Her body was quite alive, but the mother that I had known had disappeared long ago.
The doctor at the hospital had said that it was pretty hopeless, and all that we might hope for is for her to remain bedridden, if she survived at all. As a family, we decided to take her back to the care home with hospice support.
When we made this decision that was so devastatingly final, we intellectually knew that it was the right thing to do, but we were also filled with doubt. Her quality of life had been gone for years; that was true. She was no longer able to speak, or to engage in life in any meaningful way, that was true too, but she was still our mother, and she was still alive and breathing.
There were options. We might have sent her to a skilled nursing facility where they could have inserted a tube into her stomach that would have fed and hydrated her. Maybe with a little time, she’d improve. Who knows, she might recover enough to benefit from some basic therapy. Certainly this crossed my mind, but the question about quality of life was glaring at us. These measures might have prolonged her life, and we were all faced with the grim reality that the quality of her life had been seriously diminished long before this stroke. Was there really any question what we needed to do? Hadn’t I prayed for this in the past?
The next day my sisters and I called a Catholic priest, who came and administered the last rites—then we sat and held our collective breaths. In my frantic grief, I imagined that he would perform the sign of the cross over my mother’s forehead, and that she would magically let go.
Of course, she didn’t.
It wasn’t going to be that simple or painless. For the next ten days, she lingered on, and the guilt and fear that I felt was excruciating. At times it felt as though we were committing a kind of matricide, but we didn’t acknowledge these darker feelings to each other. We knew that we were hurrying her physical death along, but we also knew that the woman who she had been had long vanished from our sight.
We had to let go of our beloved mother, and she had to let go too.
To lose my mother to dementia was a “living grief”. When I went to visit her over the last few years of her life, I was aware that our connection would be limited, so I tried to keep my expectations low--usually to no avail. 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 left those visits feeling distressed, 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.
She had been a person with infinite patience, and had a knack for appreciating smaller pleasures. Things that would drive me to drink wouldn’t faze her in the least. While I would sit and complain about having to wait for an hour at the pharmacy for a prescription, or in a long line at the DMV, she would sit and wait calmly, trying to convince me that there was no reason to put off doing things out of boredom or impatience. While I would scarf down my food so that I could hurry along to the next thing, she could sit and ponder a scone and a cup of coffee for an hour, enjoying every bite. I was nothing like my mother, but as an adult I came to appreciate how invaluable these qualities really were. She lived much more in the present than I could have ever hoped to.
I started to notice that something was 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. This was just the beginning of an 8-year illness that ended in a heartbreaking decision that raised questions about quality of life, and when to pull the proverbial plug.
This story can’t be fully understood without revealing the greatest tragedy of her life. In 1999, my brother was injured in a horse riding accident. He hit his head with full force, and 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 her son would come back to her (a scene that would repeat itself a few years later as she slipped away from me). She drove to the hospital every day to sit by his side-- a dutiful and loving mother who was losing her son.
When we finally removed him from life support, he was septic and dependent upon a ventilator. As a family we knew that it was hopeless--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, whose greatest joy was gathering her extended family around her for large holiday dinners, who could make anyone feel welcome and embraced with just a smile—that person was slipping away right under our noses.
Over the next few years, I bore witness to a mental and physical unraveling that would take my mother from me bit by bit. I was forced to emotionally distance myself from the only person that I knew who would never abandon me. My mother 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.
Sure, I’m a grown-up, so I ought to be able to handle it. At least this is what I HAD to tell myself to compartmentalize my feelings. 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, and be able to deal with it.
Why should I be able to deal with it? This is my mother, the person who always took care of me. I watched her as she forgot how to cook. 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. Sure, I can deal handle this. And inexplicably, I did.
Over the next 3 years, I watched as my mother slowly deteriorated physically and mentally. At the time of her stroke in 2006, she was no longer speaking or making eye contact. She had become a shadow of her former self. Her caregivers, who called her “mommy”, had been feeding her and changing her diaper. Toward the end, she spent her waking hours slumped in a wheelchair, unaware of her surroundings, descending deeper into darkness.
When I got word that mom had suffered a stroke, I was on the big island of Hawaii on a long overdue vacation. My sister called and said that mom had been taken to the emergency room. All at once I wondered why. She had an advanced directive, and it was clear--she was a DNR, do not resuscitate. Why then was she being pumped full of fluids and revived? I failed to see the logic in this decision, especially after what happened over the next 10 days.
It was a lost opportunity to let our mother go quietly, but I don’t think that any of us were really prepared for that moment of truth. Our first inclination was to keep her here with us. We were all afraid of what we would have to face when she was actually gone--that blank space where mother used to be.
Worried and confused, I flew home the next day to see mom, and to meet with my sisters. My family gathered at the care home, where my mother was lying in her bed, 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. Her body was quite alive, but the mother that I had known had disappeared long ago.
The doctor at the hospital had said that it was pretty hopeless, and all that we might hope for is for her to remain bedridden, if she survived at all. As a family, we decided to take her back to the care home with hospice support.
When we made this decision that was so devastatingly final, we intellectually knew that it was the right thing to do, but we were also filled with doubt. Her quality of life had been gone for years; that was true. She was no longer able to speak, or to engage in life in any meaningful way, that was true too, but she was still our mother, and she was still alive and breathing.
There were options. We might have sent her to a skilled nursing facility where they could have inserted a tube into her stomach that would have fed and hydrated her. Maybe with a little time, she’d improve. Who knows, she might recover enough to benefit from some basic therapy. Certainly this crossed my mind, but the question about quality of life was glaring at us. These measures might have prolonged her life, and we were all faced with the grim reality that the quality of her life had been seriously diminished long before this stroke. Was there really any question what we needed to do? Hadn’t I prayed for this in the past?
The next day my sisters and I called a Catholic priest, who came and administered the last rites—then we sat and held our collective breaths. In my frantic grief, I imagined that he would perform the sign of the cross over my mother’s forehead, and that she would magically let go.
Of course, she didn’t.
It wasn’t going to be that simple or painless. For the next ten days, she lingered on, and the guilt and fear that I felt was excruciating. At times it felt as though we were committing a kind of matricide, but we didn’t acknowledge these darker feelings to each other. We knew that we were hurrying her physical death along, but we also knew that the woman who she had been had long vanished from our sight.
We had to let go of our beloved mother, and she had to let go too.
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