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Caregiving Lessons

A daughter learns a lot about herself in the process of caring for others

En español │I'm a third generation caregiver, which sounds as if I should be expert at it. But in truth, it took me three generations to really understand the fundamental truths of caregiving, and, more important, how to apply those fundamentals to myself.

My Grandparents

When I was just 13, my maternal grandparents moved in with us after my grandmother's stroke. She was in the early stages of dementia, and the stroke had weakened her so she needed constant supervision.

It was a lot of fun in the beginning; Granny told wonderful stories of her life, and I didn't mind fixing her hair or helping her get dressed. But as her dementia progressed, her stories grew tedious. Her silliness became annoying. My mother handled this progression with grace and poise. I was not always so kind.

I came home from school one day to find my grandmother in my room, reading my diary. I jerked it out of her hands and ordered her out of my room. I instantly regretted my temper tantrum. But it was too late. Her crestfallen face would forever remind me how fragile dementia patients are.

I confessed all to my Mom, so ashamed I couldn't even look her in the eye. Later, I tried to apologize to Granny, but she had no memory of the afternoon. But I did, and took the lesson of true caregiving that my mother taught me into the second generation.

The only good thing about Alzheimer's, at least for my mother and my grandmother, was that it at least stranded them in a time when they were the best versions of themselves.

My Parents

I was 35 when my parents moved in with me. I'd lived two hours away for many years but kept in close contact with my two brothers. It was clear that Mom and Dad needed someone there 24/7. My mother was in the early stages of Alzheimer's. My dad had endured two strokes and two heart attacks, and his diabetes was way out of control.

"I can do this," I assured everyone. My relationship with my father had always been an uneasy one. I'd spent most of my adult life seeking his approval in some form or another, and I think, on some level, I thought that by doing this, perhaps I'll finally win the old man over. And I truly wanted this time with my mother because I knew the day would come when she no longer knew me. I just didn't expect it so soon.

The first six months went smoothly, although Dad spent a lot of it in the hospital. He'd arrived at my house with failing kidneys, so getting him to a manageable level of health took several months. I think those weeks at the hospital took the hardest toll on Mom, and some nights, she simply couldn't walk out of there. I would get a hospital wheelchair and push her. But she wouldn't miss a day. My dad was and still is her world.

It was during one of Dad's longer hospital stints that Mom's transition from moderate to severe finally came. I was exhausted from a week of back and forth to the hospital and dealing with the stream of specialists who were in and out of Dad's room faster than the insurance companies could keep up. The majority of our conversations revolved around Dad. I noticed her repeating was getting worse, but hoped it was merely the exhaustion seeping through. One morning I came in to find her wandering around the house still in her pink housecoat.

"Mommy?" I asked, suddenly so afraid she was gone forever. Please, please, remember me, remember me, remember me. "It's me, Kathy."

"What's wrong?" I asked, going to her side.

"Where is this place, where we are?" She wore a puzzled look. "How did I get here? Where's Tom?" Her voice rose at the mention of my father, because they'd been sweethearts for nearly 60 years now. That kind of bond transcends the boundaries of even Alzheimer's.

"He's not here, Mom, remember?" I saw, though, from the blank look in her eyes, that she didn't. And finally, the words I knew would come one day, but didn't expect this soon.

"Who are you?"

My mom has always been my best friend. She taught me so many things, but she didn't teach me how to cope when she forgot me. How to sort through the clutter of her mind, for that one synapse, that spot that would trigger the memory of holding a small baby girl in her arms, of tucking her into bed at night, of raising her to become a woman.

"Mommy?" I asked, suddenly so afraid she was gone forever. Please, please, remember me, remember me, remember me. "It's me, Kathy." I used the name she always called me. "Remember?"

"Kathy?" she said the name as if it were not something she'd said a thousand times. "No, I have two sons, but I couldn't have any more children."

"I know, but remember, you adopted me, you …" She was shaking her head, agitated, so I stopped. I knew upsetting her would only tighten the knot, not release it. "You and Dad live here. See, this is your room" and I led her to familiar things, photos of us together, which I kept in plain view. It was important to have daily reminders of our bond, whether she knew me as a daughter, or just some woman who took care of them, I wanted to be seen as a familiar. The presence of her quilts and photos and bed seemed to calm her, but there was still no recognition in her eyes.

I tried to control the surge of raw pain that she forgot me because I was adopted. I had been 2 when that had happened, so I never knew any other parents; the thought that I was not theirs never occurred to me. Yet here, her disease was sinister and cruel, finding that crevice of truth to nudge her into, and blotting out the rest.

But now was not the time for my sorrow. My tears only confused her more. Wiping them away, I put a false cheer into my voice. "It's okay. Let's get you something pretty to wear to the hospital." And just like that, the moment I'd dreaded for years came and went. I'd found that my mother's dementia was much like Granny's had been. Both loved pink and pretty, girlish things. The only good thing about Alzheimer's, at least for my mother and my grandmother, was that it at least stranded them in a time when they were the best versions of themselves, blushing young girls, filled with life and excited for what it held. For them, at least Alzheimer's had not left them in a land of uncertain limbo.

Dad's health finally allowed him more time at home with us, but his demands increased, and, suddenly I felt like a child again, seeking his approval. I would have done anything for his praise, and I pushed myself further and harder than I should have. My body stopped me cold with a severe case of pneumonia. But there was no time to be sick, not with Mom's mental state and Dad's health needs. And there was no time for my needs; meeting them was such a ludicrous thought it almost never occurred to me. I sometimes missed the activities I used to enjoy: reading, cooking, shopping, sleep. But, unwilling to admit I'd bitten off the proverbial "more than I could chew," I pushed myself further, ignoring the signs that I wasn't over the pneumonia, until I wound up in the hospital.

That's when I learned what took me three generations to learn. Caregiving starts with care taking. Too often, caregivers fall in the trap to which I did; they give so much care that they give away their selves. And that was my nearly fatal mistake. I had done almost no caretaking of myself during the last two years.

My Turn

A week in the hospital and lots of antibiotics pretty much cured my pneumonia. But the rest would take some time. Therapy would help me deal with my insecurity and my grief as a daughter, forgotten. But my body had given me the clear signals I had ignored because I thought once I was a caregiver, that everything and anything else that defined me was gone. But while my parents stayed with my brothers, and I healed up, I began to think: maybe I wasn't meant to be a caregiver. Because I was having a difficult time just being the daughter in all this. Dealing with having my mother forget me was something that was going to take time. Everyone kept telling me "you knew it would happen eventually," which is true, but it sure doesn't prepare you. Nothing prepares you for that blow.

My parents decided to stay with my brothers. It was the town in which my mother felt most at home. I knew that my bigger city offered better doctors, but, I couldn't give them the landscape of the familiar, which went beyond some photographs or furniture. It was the small town they'd spent 35 years in, and where they wished to spend their last years, too.

I stay in touch by phone and frequent visits. Sometimes, like last night, I call my parents, my breath held in my throat, waiting to hear my mother's voice. I wonder if she will know me. I say hello, awaiting the verdict, searching her words and tone for the recognition I crave. "Do you know who this is?"

"Of course I do, it's my baby girl." She seems to chastise me for even thinking she wouldn't recall who I am. There is a bitter sweetness to knowing that she is blissfully unaware of her disease. I relax, hearing the words that tell me she is having a good day. When I am her "baby girl," I melt inside, wanting to cry and throw myself to her chest and sob at the joy to be known. Instead, I say, "Of course I am." And I always will be, because I know. And that's enough.

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