Wednesday, November 04, 2009

Alzheimers: Living the 36 Hour Day

This is far removed from my usual happy-go-lucky "Oh, how cool" and "I love this place" raves of Alaska, but this, too, was a part of my life. A Facebook friend just posted that her father has Alzheimers, so excuse this moment of seriousness. This is for her, to help guide her along the way, yes, but mostly to remind her that she isn't in this alone. It took me a long time to write this story, nearly three years after Mom was gone, but if it helps one person prepare and learn to appreciate the small miracles and pleasures of still having your loved one with you, it was worth the tears I shed.

Living the 36 Hour Day
Alzheimers: A Caretaker’s Story

"Where's June?"

Two words. Two simple words that turned my world upside-down.

Until that moment, when my mother failed to recognize me, I'd been able to ignore the signs of her deteriorating mental condition. Now, confronted by these words, I was forced to face reality.

My mother had Alzheimers. The signs had been there. The increasingly poor memory could easily be excused as simply due to her age but...her reluctance to read? Deteriorating eyesight. Forgotten names? Rudeness? Paranoia? The oft’ repeated questions of, “What time is it?” “What day is it?”. Well....she’s old. That’s all.

As time went on, however, the changes became increasingly difficult to cope with, let alone rationalize away. Like, the day she burned a pan of water dry on the stove, then raged at my father for pointing it out. She'd been walking with a heavy, three-legged cane since a serious fall the summer before and, to my horror, I saw it raised in rage that day, as she threatened to "knock some sense" into him. Black-and-blue marks soon became all too common on his body.

Another day, as I bent to pick up some crumpled papers from the floor, she exploded, "That’s mine!" Taken aback, I could only stare at her in wide eyed disbelief as she advanced threateningly on me, all the while cursing and call me vile names. My mother, the Sunday School teacher, cursing? Since then I've learned that this sort of personality change is a common symptom.

My father, attempting to make peace, was struck on the shoulder by her cane. She picked up a book from the coffee table and hurled it at him, barely missing his head. This was quickly followed by a lotion bottle that struck him squarely on the chest. I shuddered to think what would have happened had it been a knife. Yet, seconds later, she had no memory of the event.

Unfortunately, in our ignorance, we tried to convince her of our truth, and her anger again flared. She began cursing and striking out, tossing pillows right and left, kicking the trash can from one side of the room to the other, upending the coffee table, and telling us we were going crazy and she was going to kill us.
My mother, my gentle, loving mother, raging like a maniac, threatening to kill me? Yes. Alzheimers is cruel. Not only do its victims lose precious memories, but whatever shreds of personality that made them special, whether their smile, love of music, or their gentle nature, changes, often drastically. The person you knew is no longer there. Instead, you, are left to face an unknown, unpredictable stranger named Alzheimers who comes dressed in your skin of one you love.

There were other, more personal problems. While I was occasionally able to talk her into allowing me to help her bathe herself, she became increasingly reluctant to do so. Couches and chairs were routinely soiled with urine and waste. Home health care nurses were turned away. In addition, she wasn't eating well, and nothing anyone could say or do could convince her to do anything her damaged mind was set against.

Even more amazing to me, my mother, who had been happily married to my father for over sixty years, seemed to have become convinced that he not only had another woman but was keeping her hidden in the backyard. Then, to my amazement, I found out who the other woman was me!

One day, after spending a few moments alone in the back yard with my father, I entered the house to be met at the door by my mother. “Who was that woman?” she hissed. “What did he do with her?”

Shocked, I realized that she had no idea that the woman she had just seen was me. She was convinced that, as the woman was no longer in sight, she must be hidden somewhere. No amount of insisting that the only person in the back yard with my father was me would convince her otherwise. Then, suddenly, she looked straight at me and said, "Where's June?”

Struck speechless, I stared. Yet, in a heartbeat, she resumed talking, once again apparently aware of who I was. Oh, yes, she was still convinced my father had a woman hidden in the backyard, but she again knew who I was. Unfortunately, this soon became the pattern. Increasingly, particularly during moments when my own anger and frustration at the disease that'd robbed me of my mother grew, she'd turn to me in bewilderment and ask me who I was. I took some comfort in the fact that, blessedly, the daughter in her mind remained calm and loving while I, this stranger to her, became increasingly anything but.

Slowly, I faced the cold, hard fact that not only had my mother become a danger to others, but herself as well. One night, long after bedtime, something told me to go to the kitchen. The oven was on and a fast food sack, obviously there for some time, was beginning the burn. Fortunately, I was able to retrieve the sack with no damage done but realized that I could no longer take anything for granted. Water faucets were left running. The horse was let out of the pasture to wander. Papers I’d laboriously worked on, in an effort to complete my master’s degree that semester, vanished. Walls were written on. Soiled clothing was returned to closets and drawers. Food was hoarded and stockpiled in the most bizarre places.

Then, one night, somewhere in the wee hours of the morning, my bedroom door slammed open. Mom stomped in, simultaneously turning on the lights and hurling a book at me. She had no memory of it the next morning and, needless to say, I began to sleep with my door latched.

‘Twas little Christmas cheer in our house that year. Mom somehow sensed that this day was special but didn’t know why. Reminded that it was Christmas, she’d pout, “I guess no one got me anything,”“What day is it?”

Even worse, from the moment I awoke, till the moment she finally went to sleep the next morning at four, she never let me out of her sight. I'd get up to go get a drink, she’d come with me. I'd go to the bathroom, she'd follow.

At first this was somewhat amusing. I quipped to my father, “Well, this is one way to get her some exercise.” This went on for the entire day, however. Soon, feeling trapped and frustrated, my best intentions were forgotten, and I began to snap at her. She picked up a pillow lying on the sofa and threw it at me. To my surprise, I found myself picking it back up and preparing to hurl it back at her. Shocked at my angry reaction, I was able to stop the motion and it fell harmlessly at her feet. Suddenly, I was afraid of hurting her.

By early evening, I was practically hysterical. A normally laid-back, calm in the face of chaos kinda person, this was totally alien to my personality. Yes, I'd read all the books, studied all the pamphlets, listened to all the specialists. I knew I shouldn't take it personally. I knew I should simply calmly answer her umpteenth request to know what time or day it was as calmly as I'd handled the first but, quite frankly, like all caregivers, I had reached my limit. Crying, I attempted to escape into the bedroom. She followed. I rushed past her to the living room. She followed.

Seeking solitude, I went into the bathroom again, closing and locking the door behind me. She followed, beginning to pound on the door, yelling and screaming, kicking at the flimsy door. I knew I was being childish. I knew I was only further upsetting my father, whose illness was an added worry, but it was something over which I no longer had control. As I sank to the floor, back braced against the door, the kicking and screaming continued. Irate at my non-response, my mother screamed, “I’m going to kill you!”

I burst into tears. Head in hands, tears streaming down my face, I was forced to face the truth. My mother was gone. Even worse, she wasn’t coming back. Alzheimers had stolen her from me.

Even the shadow woman outside the door would be with us for only another short week. On New Year's Eve, as the festive sound of fireworks began to erupt in the neighborhood, she became increasingly agitated, unable to stay still. Then, even worse, she began to complain that her chest hurt. Yet, when asked, “Does it hurt?” she denied the pain. Then, moments later, she'd move her hand across her chest, looking bewildered. Again, I'd ask, "Do you hurt?" The answers were never the same. "No." "Maybe." "Yes." "I don't know."

Frightened, I wondered if she could understood the concept of pain. Had even that basic sense left her?

A quick call to my sister and we were on our way to the hospital. Expecting the worst, I dreaded the emergency room scenario yet, ironically, my mother was perhaps the most composed of the three of us. She sat, happily watching the Orange Bowl Parade, her attention diverted by two children playing in the waiting room, as my sister and I explained the situation to the nurses and doctor on duty.

This took some doing since, with a history of erratic heart rates, it was difficult for a stranger to assess her current state. Worse, when asked, she denied having any chest pains. With her own doctor out of town, we were dependent on this stranger, a man who admitted to being relatively unfamiliar with Alzheimers. I could feel their reluctance and stares but, somehow, out of my own tiredness and frustrations, I was astonished to hear myself threatening to sue him, the hospital, and anyone else I could think of if he refused to admit her. Perhaps sensing my desperation, he did.

Yet, even as we pulled away from the hospital, I felt guilt. Was my insistence because of real fears for her health or simply my own calling out for help? Was I looking for an easy way out? Perhaps. I still don't know. I do know, however, that as hard a decision as it was to leave her there that night, the next, to move her straight from the hospital to a nursing home, was even more difficult.

Caregivers are faced with this difficult decision every day and, like me, agonize over relinquishing their loved ones to someone else’s care. Like me, most know they will face the unspoken questions of those who wonder how they could "put their loved ones away."

It's a difficult decision; yet, if you love the person who once was, it's a decision that, for many, must be faced. When your loved one, like my mother, becomes a danger to herself and others, it's time. Neither my father nor I could do any more. My mother was gone and nothing we could do would bring her back. For me, it was the right choice. It was the only choice.

Sadly, my father, who had sheltered me as long as possible from my mother's deteriorating health, died only a few weeks later. They would have been married for sixty-four years that April. Mom, who had slipped away from us so long before, hung on physically for another year and a half, for the most part happily wandering the halls of the nursing home, convinced in her mind, apparently, that she was in Ohio, the scene of her childhood and happiest memories. She occasionally recognized me as I visited but, more often than not, simply chattered away to me as she would to any stranger.

Ironically, I wonder if she’d didn’t have the better role in this nightmarish play. She talked often of having just seen Paul, my father, or others who were long since gone and, in a strange way, I remain convinced she was content. True, her memories of the present were long since gone but she seemed content, lost in her own past, seeing what she wanted to see, caught in the web of confused memories of what was or was imagined to be.

Mom died the day after Mother’s Day, 1994. I’d visited that Mother’s Day and, driving away in tears, somehow knew I wouldn’t see her again. Yet, I felt only release when notified of her death. Alzheimers, finally, had been beaten. My mother, with death, had reclaimed her memories.

In Memory of Mary Catherine Llewellyn Price


Lazy Husky Ranch said...

Such an incredible story, June, and amazing courage you have in sharing it. And, also, what a beautiful tribute to your mother. I love that she beat Alzheimer's. Thank you so, so much for sharing this because of my current experience. What part of Ohio was your mother from? Is she buried there?

Susan Stevenson said...

Thank you for sharing such a personal story with your readers, June. I'm sorry that Alzheimers touched your family.

Lisa said...

Thank you so much for sharing this story with all of us. It really touched me. My mothers name is also Mary Katherine.

Brenda B said...

June, I knew you had Alzheimers in your family but we've never really talked about it. This sounds SO much like what my father went thru before he died. They never "named" his dementia but thanks to your story now I know. Thanks for sharing. I know how hard this was to live through and to put it into writing and live it again. Hugs, Brenda

Anonymous said...

I was referred to your blog post by your relative Molly. This blog almost put me into tears. I have worked in several nursing homes, and have seen first hand what Alzheimers can do to the victim, as well as the family. I have a friend, here in Stockport, Ohio, who's mother has Alzheimer's, and it is very sad to see her mental status diminishing. I think my friend is in denial, and insists on taking her to activities that she always went to, before her disease. I keep explaining to him, that she is older now, and with this disease, she needs more care than she did before. She hides money and other items in pillow cases, closets, shoes, and drawers, and then forgets that she puts them there. He is becoming very frustrated. I would like to print this for him to read.

June said...

Kimberly, feel free to share with anyone. If it helps take away one tiny bit of the frustration and feeling that you're in this together for someone, I've been successful in its writing.