The Long Good-Bye…

Do not go gentle into that good night,

Old age should burn and rave at close of day;

Rage, rage against the dying of the light.

—Dylan Thomas

______________

She’s bedridden now, mostly, they tell me. She’d stay that way all the time, except they get her up every day. For at least a little while. Sit her in a chair, so her body position changes. And so the blood can flow. She smiles some. Eats, because they feed her. She doesn’t know a whole lot, if anything, that’s going on around her. Except she smiles sometimes, as if she grasps a bit of it. But then she reclines back to the bed and falls asleep. And she sleeps and sleeps. Through the night, into the next day. And they do it all over again. Wake her. Get her up. Clean her. Then feed her as a baby is fed. One spoonful at a time. Then she’ll sit for a while on the rocking chair, maybe. But always, soon, back to bed. That’s the current state of my mother’s long helpless descent into the cruel and darkening twilight that is Alzheimer’s.

Yeah, I know. There’s a million other stories out there detailing the brutal ravages of Alzheimer’s. But this isn’t one of those million other stories that I can shrug off because I’m not anywhere close to the people affected or involved. Nah, this one is personal. This is about my Mom.

We noticed the first little bumps in her memory about a dozen years ago, or so. You can’t ever precisely pinpoint the onset of Alzheimer’s, not when it’s coming at you, because it comes at you slow. An aberration, at first. A flash of anger so far out of character that you flinch back. What was that? Where did that come from? That’s not who you are. And that’s how it was with Mom. We look back now and see the first few times. It was hurtful to the person she spoke to. That could not have been my mother speaking. But she said the words, in all their savage meaning.

Her condition didn’t deteriorate that fast, really. But it was steady. And by 2004 or so, we spoke the dreadful word in our family. Alzheimer’s. Mom is coming down with it. I don’t really remember how I felt. Just a sense of foreboding, I think, along with a vague and desperate hope that she wouldn’t linger for years and years in that condition. Not like her sister Mary, who had silently suffered in a hollow shell for ten years.

They lived in Bloomfield then, she and Dad. In a cozy little Daudy house on my brother Joseph’s farm. Their house was connected with a walkway to his. Joseph had moved from the old home place north of West Grove. Bought Gid Yutzy’s dilapidated old farm along Drakesville Road, at public auction. A perfect place for his metal sales business. Two miles south of Drakesville. Right in the center of the community, right along a paved road.

And they settled in their little house, she and Dad. She still cooked back then on her wood burning kitchen stove. And on the kerosene stove in summer. Mostly did well, getting the meals together. The rhythm of her life was so ingrained that she walked her daily steps from habit. At that time, she kept a little flock of chickens in a tiny run down wooden shack. She walked out every day, rain or snow or shine, to feed them, talk to them, to gather the eggs. Fussed when the hens came up one egg short. Which one wasn’t feeling well? She’d have to look into it. Take care of the matter. And the chickens clucked and came running when she called. She smiled and chattered at them. Here’s your feed for today. Eat well now, and lay me a bunch of eggs.

And it seemed like that’s where they would end their days in peace, she and Dad. Right there in the cozy Daudy house in Bloomfield. Sure, most of the family had scattered now, moved out. Only two of their sons and their wives remained in Bloomfield. Joseph and Iva. And Titus and Ruth, a mile or so south and west.

And I remember the last time we were there, in that house, Ellen and me. During the winter of 2006-07, I’m not sure exactly of the date. We knew we didn’t have long to be together anymore, so we made one last trip home to see Dad and Mom. The roads were sheets of ice when we arrived. I remember the bleak dreary day, how the biting sleet swept sideways from the sky. The kitchen stove crackled, the little house was almost uncomfortably warm. Mom met us, smiling. Dad was sitting in the living room, pounding away at his typewriter. He got up to shake hands, then folded his arms, and he and I sat down to visit.

Mom welcomed us both. Ellen sat there in the kitchen with her, drinking coffee, and the two of them just chatted right along in Pennsylvania Dutch. Mom always completely accepted Ellen. That day she had a little gift. A little white home-sewn apron. For Ellen to wear when she’s cooking, Mom said. And I watched them and grieved quietly in my heart. The two of them together, laughing and talking. I knew this would be the last time. It was.

She went downhill rapidly in 2007, mostly mentally. And some physically, too. She was still active, though, still absorbed in her daily household work. That’s all she ever knew, and even though her mind was receding, her body stayed on autopilot.

In some ways, her condition was a blessing for me, I suppose. That spring, my world imploded around me. I hunkered down in the storm. All my siblings and even my father quietly offered support such as I had not expected and had never known before. But they never told Mom. She never had to endure or absorb the knowledge that her son had messed up his life to such a low point. And that he now was slogging through a tough, weary road. I’m glad she didn’t know. But with that blissful blessing of ignorance also came a sorrow, for me, a few years later. She never knew that I wrote of her, told of her world as it was, and so much of what she had endured. She never knew that I dedicated the book to her.

In December of that year, my brother Joseph moved with his family to Mays Lick, Kentucky. His reasons for moving are not important to this narrative. It was a choice, and when you make a choice like that, you make the best one you know. But my parents had no choice but to move with him. He set up a new double wide close to his own new house, again connected by a deck and walkway. And so they settled in this strange new place. Dad threw himself into the experience as he always did in life, walking forward, meeting new people, writing enthusiastically in The Budget of this great new place. Mays Lick. Mom mostly just quietly rocked and smiled. She spoke now and then, sometimes coherently. And she grasped that she wasn’t in her home in Bloomfield anymore.

Her children gathered around her when we could, at weddings, funerals, and sometimes over Christmas. And right up until recently, she always recognized us, and spoke our names. She wasn’t there much in any other way, but she knew her children. And with the passing of each month, it seemed, she sank ever farther into a world we cannot know, a world from which no one has ever returned to tell of how it was.

And it all got a little tricky, the care of them both. Decisions had to be made, decisions sometimes strongly opposed by Dad. His mind was still pretty sharp. Still is. But as Mom sank ever deeper into the fog, he couldn’t quite grasp the reality of it all, seemed like. And he had his own bright-line rules, the ones he had observed and followed all his life. He would not stay with any but his Amish children. If you left for the Beachy Amish or the Mennonites, oh, no. He wouldn’t stay in your home. So his options were severely limited to a very small group. Of his eleven children, only three remain Old Order. Rosemary, my oldest sister, and her husband Joe. They never left Aylmer. Joseph and Iva. And Titus and Ruth, who still reside in Bloomfield.

Mom takes a lot of care. And Titus and Ruth were never an option, because, well, a man in a wheelchair takes a lot of care as well. Plus, they adopted two rambunctious little boys, Robert and Thomas, about six years ago. Their home is full, their lives are busy. So that left only Joseph and Rosemary. Then a few years ago, Joseph came down with some serious health issues. He tires easily. And it was a tough road, for him and Iva to try to take care of my parents. But they did their best for a few years. It wore them down, stressed them out. And now only one place remains, where Dad will stay. At Rosemary’s home in Aylmer.

It all seems a little senseless, but it just is what it is. Every one of my sisters and my brothers with families would gladly take my parents for a turn in their home. Take care of them. Take care of Mom.

For the past few years, before it reached this point, they stayed with Rosemary in Aylmer over the summers. Rosemary’s children come to help take care of Mommy, as she is called by her offspring. And the Aylmer community kicks in, as well. When it comes to taking care of their own, especially the elderly, few systems are better than that of the Old Order Amish. No one ever goes to a nursing home. The elderly remain on the land they knew and loved, in comfortable and comforting familial surroundings. But still, to quote a line from an old Eagles song, “Every form of refuge has its price.”

And here, I honor all my sisters. And all my siblings, really. But my sisters stepped up. They scheduled family phone conferences, and you’d better show up. We all connected and talked. Vented, too. In the end, though, they stepped up to do what needed to be done. Joseph and Iva needed help in Kentucky. Who would volunteer to go for a week? And they stood tall, one by one. Maggie can go on this date, for this time. Rachel can go next. Then Naomi. And then Rhoda. And they went. Took the time from their own busy lives and schedules, dropped what was going on, and traveled home to be with Mom. To take care of her. And when my parents were in Sarasota during the past two winters, they all took turns again. Including my brothers, too. Joseph and Jesse and Stephen and Nathan all went down to see her, to be with her.

And during those times, something obstinate rose inside me. I don’t know why. Maybe it’s because I’d been gone so long. I don’t want to go see her. Why can’t I remember Mom as she was, before she reached this state? I used whatever excuse was at hand. In 2010, I was writing my book. I want to be left alone. In 2011, the book was coming out, and I had places to go and things to do. And no. I don’t want to see her like this. No. I’m not coming. And they left me alone, pretty much, my siblings.

Last summer, my parents stayed as usual with Rosemary at her home in Aylmer. Mom could still walk a bit back then, and one day she was outside with her daughter. There was little conversation, as Mom was beyond that now. But she suddenly walked out toward the road. Rosemary stayed close to her. Mom shaded her eyes with her hand and stared southeast, across the fields. And she spoke. “Something looks familiar, there, in that place over there,” she murmured. She took a few more hesitant steps forward. Still staring intently. “That place looks familiar,” she repeated. Something had triggered in her mind, and called her back to at least some awareness of the present moment. She was seeing and recognizing our old home place, the place where my family had lived before we moved to Bloomfield in 1976.

Last winter, they spent three months in Pine Craft. January through March. Dad rented a nice house, and they settled in. They took Mom out and about in a wheelchair, and she seemed to very much enjoy her surroundings. And again, my siblings took turns going down for a few days or a week, to help take care of her. My cousin, Fanny Mae Wagler, traveled down with them to take care of Mom for the first month or so. One evening, as they were sitting around the table, Fannie Mae gave Mom pen and a blank sheet of paper. “Do you want to write something?” She asked Mom. And Mom took the sheet and tore off bits from the edges. She dawdled for a while. And then, after some time, she picked up the pen and clearly wrote two words. Thank you.

January 29, 2012. Mom, Nathan, and Dad in Pine Craft

I last saw her close to two years ago. She was frail then, but walking. She knew my name and spoke it. And now there is no more to be said about not going to see her. Sometime in mid August, I plan to travel up to Aylmer, probably over a long weekend, just for a few days. Inside, I shrink from the journey, as I have for the past few years. But now it’s time. So now I will go.

We have prayed, all of us, her children, that the Lord would take her, would release her weary wasted body from this earth. That she would go to Him. That may seem strange and wrong, even, to some. But it’s not. There is little in this life for her anymore. Except only life itself, which of itself is always a rare and priceless thing. But still, to human eyes, there comes a point when that single factor alone is not enough to wish her to stay.

A couple of times in the past few months, her breathing slowed so much as she slept that they thought she had left us. But she was just a in a state of deep, I don’t know what. Something triggered by the Alzheimer’s, I suppose. In any case, she still remains, and we cannot question that. However senseless it seems to us. The Lord’s ways are not our ways. The Lord’s thoughts are not our thoughts. His timing is never wrong. And one day, perhaps soon, perhaps not, He will call her home to Him. She has suffered and endured a great deal in this life. She still endures. I like to think she doesn’t suffer much anymore.

I remember back in the early 1990s, when Nathan and I headed home to Bloomfield every year at Christmas How Mom always welcomed us, excited and smiling. Her boys were home. And then, a few days later, as our departure loomed, how she smiled still. Bravely. The sadness shone from her eyes. Good-bye, she said with forced cheer. Good-bye. Drive carefully and take care. Come home again. And she always pressed some little gift into our hands.

And we spoke awkwardly to her. Good-bye, Mom. We will. We never hugged, because the Amish don’t hug, mostly. At least not in any world I had seen up until that time.

I wish there were a way to say good-bye to her one more time like that. Not as I’m leaving her. But as she’s leaving us on the final leg of her journey home.

And I’d like to go back to those days and say good-bye to her one more time like that. This time, I would hug her.

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