She thought she had it all figured out.
I don't know how many times she told me: "When I die, all my paperwork is in the desk. Everything you need. It's all taken care of."
Her desk was neat as a pin. There, she had her bank account number and the numbers of her attorney and her accountant. She also had a lot of other papers she thought we might need.
"And, be sure to go look in my safety deposit box," she always said.
In the box, was her will, the deed to her house, along with old deeds of houses she had bought many years ago. Family death certificates, both of her wedding licenses, special papers. All the things that make a life.
But, nothing happened to her like she thought.
Like any of us, thought.
The end came slowly. Very, very slowly.
The years before the end, gave her time to stack boxes of papers in the dining room. Taxes, receipts, old cards from friends, packages of pictures never put in albums.
"These are the things I haven't gotten to yet," she said.
And I thought she was just busy. Too busy to sort, add, put away.
I came to her house twice just to help her file things. I was armed with fresh new boxes and bright colored file folders and lots of big paper clips. I tried to sort, I tried to add, I tried to put away. But the more I went on, the more confused I got.
"Do you know you have things mixed in here from different years?" I asked one day in desperation. My mother never misfiled things . She lived and died by her systems. Nothing out of order.
"Oh, don't worry about all that," she said. "I told you I'll put it away later. Let's visit. Let's go out to lunch. Just leave that there and I'll do it later."
And, still, I didn't understand what was happening.
Months went by; visits passed.
And then, one night, just after Christmas, my husband and I flew to her home in a panic. Her younger brother had just had a massive stroke. He couldn't speak. He could barely walk. He was going to be released from the hospital that day. And, at the age of 83, she had called to tell us that she was going to bring him home and take care of him.
"There's no way she going to be able to do that," my husband said, shaking his head.
"She sounds strange on the phone," I said.
"Just strange. I don't know. Something's off."
"Her brother just had a stroke!"
"It's not that. It's something else."
And still I didn't understand.
Until I saw her.
She had lost weight, but it was more than that. She was wandering. Wandering in her own home.
My mother never wandered. At her sickest, she was moving around, doing "things", giving endless orders to others. My mother never wandered.
She looked at the huge pile of boxes that had materialized in the dining room.
"Oh! All those taxes! I've got to get to that, and clean it up!"
And, then, that night, after we put my uncle to bed, it finally started to make sense.
She was furious when my uncle would ring the little bell we'd given him to ring if he needed something.
"He just rang it a few minutes ago!" she said angrily. "Why doesn't he just go to sleep?!"
She yelled at him for not picking his clothes up off the floor of his room. She yelled at her other brother who came to visit. She complained loudly about how no one in her family cared about her anymore. About how no one would help her.
"She's under stress," my husband said.
"Nobody understands!" she growled.
But, I thought maybe I did.
When I took her to the doctor, a week or so later, he confirmed my suspicions.
"I'm pretty certain she has Alzheimer's Disease," he told me over the phone, a few days after he'd given her a series of tests in his office.
"You mean dementia," I said.
"No. I believe she has Alzheimer's Disease. They are different. And she shows clear symptoms of having Alzheimer's."
And I spent the next four years, learning exactly what those symptoms were.
We moved my uncle to a nursing home, and moved her out of her house into retirement living. She loved being in such a beautiful place where they "did everything" for her. Time after time, we invited her to live with us, and time after time she refused. Independent to the end, she insisted she had everything she needed and she wanted to stay in her own apartment.
Until one day, three years later, when she had a heart episode, and we told her that, like it or not, she was going to have to move up where we lived. She took it fairly well, the illness sapping some of her usual feistiness. Before she could think too much about it, we packed her things, put them on a truck and flew her out to the state where we lived.
Things happened fast after that, but those who know the illness well, know that any kind of move or change of surroundings will bring that on. She recognized her grandchildren, and my husband and I, but, had trouble remembering people she had just met. She talked a lot about what had had happened in her childhood, but couldn't remember that I'd visited earlier in the week. Little by little, the childhood stories changed from happy memories to angry ones. During one period, she'd entertain me during every visit, with a huge litany of all the things my father had done to her.
"He was not a nice person, " she said confidentially.
This was not news to me.
The two things that never left her until the very end were her sense of humor and her willingness to share whatever was hers. My husband tells of the many times he brought her candy, (their mutual vice,) and how the first thing she'd do was break it in half and offer him a piece.
Late in her illness, she was still making jokes about herself and other residents. Her voice had gotten lower and quieter, but suddenly, when you least expected it, you'd hear her laugh at something funny. She kept her wild, yet sophisticated sense of humor until close to the end, never missing the little ironies.
"She's crazy," she'd whisper about Gretchen, her next-door neighbor in the memory care wing where she lived.
Gretchen was a woman who walked from room to room, mumbling things that were often non-sensical. Often, she took objects and moved them to other places.
"You know, there are a lot of crazy people here," Mom would add, confidentially.
"And you're not?" I'd always say. It was an old joke we'd shared between us.
"Oh, no! I'm perfect!" she'd add quickly. And then, she'd laugh.
Her real decline began in the beginning of that summer. She became more stubborn and more angry. Childlike in her refusal to do certain things. Combative with the caregivers she'd liked so much. She hit a couple of residents and yelled at others. We put her in the hospital to manage her medications because the care facility couldn't have her acting so violently. The first hospital she went into, she thought she'd trick them into breaking out.
"I'd like to go for a little walk down that hall," she told some poor nurse, innocent to her wiles.
"Sure!" the nurse chirped cheerfully, wheeling her chair about 500 yards down a straight hallway that led to the next building.
"Now it's time to go back to your room," she said in a sing-song voice, after they'd made the long trek.
"No. No, I'm going home now," Mom said, starting to get out of her wheelchair and moving toward the door.
The nurse later told us that Mom was wheeled back to her room with a dark scowl on her face and both arms crossed in front of her chest.
Later, at another hospital, she pleaded with me over and over to "go home."
"You have to stay here until you get well, Mom," I said, "then you can go back to your home."
The next time I visited, I mentioned that she's probably be released the next day.
"Oh, no," she said. "I like it here. People are very nice to me. I'm not going back to that other place," and she crossed her arms in defiance.
When the end finally came, it came with all the bells and whistles that Alzheimer's likes to bring. Mom had stopped speaking for the last few weeks, except to mumble a word or two that we could not understand. She was thin and frail and seemed so helpless. Until I saw the caregivers try to put a small assistive device on her lap to keep her from falling out of her wheelchair.
First, she slunk down and tried to squeeze her tiny body out through the bottom of the chair.
"Oh, she's trying to escape," the caregivers smiled cheerfully. "She does this a lot."
Then, as they gently tried to hoist her up, the woman who hadn't spoken in weeks, suddenly yelled out angrily: "NO! "I DON'T LIKE THAT!!"
Just in case we had any doubts.
At the end, she fought for hours past the time nurses thought she would last. The day before she died, the kind hospice nurse said: "If this were anyone else, I'd say she'll be gone in an hour or two. But, since this is your mother, I'd say she could go on like this for a long time."
Thankfully, she passed away the next day. She loved autumn and the changing colors of the trees, more than almost anything. Born in September, and dying one morning in October; there was something lovely, and very fitting, about the timing of her passing.
Alzheimer's Disease is not a kind master. Patients go through a string of indignities, and they say and do things they would never dream of. It often takes them past the brink of sanity and squeezes the last bits of life out of them.
But, is there really any "good" way to for death to come? Can we ever be fully ready for something we don't understand? Something that is so different for each one of us?
No, the victory does not come here. The victory comes on the other side.
That was the one thing she always did have figured out.
And so do I.