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.
Share
I’m sorry about your mom. I watched someone go through that for the better part of a decade in the past decade and it was rough while she lived, now my grandfather is starting to show serious signs of memory loss. Hang in there Ira.
Comment by Ryan Mercer — July 27, 2012 @ 6:59 pm
My heart aches for you and your family. I know this was not an easy piece to write, but write it you did, and beautifully. This terrible disease is a stealer of all things familiar and changes lives in ways that could never be imagined. The one wish that most people have, I think, would be that they recognize their own selves in their senior years. I will pray for you and your family that the memories of the love that she showed toward her family throughout your lives overshadows the memories of her being lost in herself. God bless you all.
Comment by Carol Ellmore — July 27, 2012 @ 7:19 pm
Ira, where do you find the strength to write and post thoughts such as these? You bless my heart.
Comment by LLJ — July 27, 2012 @ 7:21 pm
Poignant and touching, Ira. No matter our age – or theirs – it’s a hard thing to watch your Mother slipping away. Praying you will have a deep sense of peace when you go for the visit.
Comment by Velma Smucker — July 27, 2012 @ 7:47 pm
A wonderful tribute to your mom – you are blessed to have her in your life this long.
Comment by Rosita Martin — July 27, 2012 @ 7:53 pm
What a beautiful tribute to your mother. My mother is 96 and also slipping way from me. They loved us and cared for us when we needed them. God Bless them. Fran
Comment by Fran Sletvold (Bob's Mother) — July 27, 2012 @ 7:54 pm
So sorry you have to be going throughout this. My dad had this for at least 8 yrs but it was slow, and thank goodness we never had to feed him..It was hard seeing such a brute of a man become smaller and fragile. He’s gone now and the good memories remain, not at first but with time we remember the younger hearty man we all called Pop..
Comment by Elsie Riehl Smucker — July 27, 2012 @ 8:09 pm
Oh my FRIEND…My heart hurts for you. I wish I knew words to make it all better. I still struggle every day as you know….I would of given anything to and still would to have just one more day. Take the day, Ira, as she may not know, but you always will, my friend. It will stay with you forever..LOVE you TONS.
Comment by Margie — July 27, 2012 @ 9:34 pm
What a beautiful tribute to Mommy…you made me cry. Blessings to you in your upcoming trip–Love you!
Comment by Dorothy — July 27, 2012 @ 9:46 pm
So sorry about your Mom, can’t imagine how much pain you feel. I just finished your book a month ago, was fascinated and gripped by all you went through. It still blows my mind when I see what God can do when we submit to Him. Your life is a good example of that. Keep writing please!
Thanks for sharing.
Comment by Hilda Simmons — July 27, 2012 @ 9:54 pm
I am so sorry to hear this about your mom, I know it took a lot of courage to write your feelings. I will remember you in my prayers. I am not Amish, but I am a born again christian and proud of it.
I also have a very close sister that is dealing with Alzheimers. She is my eldest sister and I am the youngest and I have been closest to her since I was 17 years old. She is now 78 and They say she doesn’t even open her eyes, and I can’t go see her. I can’t see her in this state, I want to remember her like I last saw her. I am now 70 years old and beginning to not remember things. My mom has Dementia and is still alive at 98 years old.
Don’t need to say anymore, just wanted to say how much I enjoy your writings. and to let you know that I will be praying for you & your family.
God Bless & keep you.
Comment by Linda Morris — July 28, 2012 @ 12:14 am
So sad for you Ira.
Comment by pizzalady — July 28, 2012 @ 12:50 am
Ira,
It is never easy to watch the decline of a loved one. You are in my thoughts and prayers.
Comment by Ann Cralidis — July 28, 2012 @ 7:02 am
I’m so sorry about your mom. I’ve been there, only for me it was a stroke that took my mom and left us with a shell that used to house my mom. For almost three years we would take turns taking care of her. Some of us, that is. A couple of us seldom if ever showed up and at mom’s funeral I felt only pity for them. Because now they were not only grief stricken, they were also guilt ridden. I wouldn’t have traded places with them for any thing. So do go see your mom and do take care of her and love her and even if she doesn’t “know” on some level she will know. At the very least you will know and it will heal something inside of you.
Comment by Ruthy Troyer — July 28, 2012 @ 8:27 am
Your writings are so smooth. So easy to read. I understand your heartache, my mother also suffered. And now my mother-in-law. And you are right, it is all in God’s timing. I know it is so very hard. I feel that your mother knows your heart and she understands more than you know. Blessings my friend.
Comment by Jan Ellis — July 28, 2012 @ 9:58 am
I’m so sorry about your Mom. Dee’s Dad also had Alzheimer’s and died about 4 years ago. He got slightly angry a couple times, but mostly he was very friendly with a ready grin. He would tell the same story over and over again. At the time I was tired of the same stories, but now I wish I could hear him tell them.
Comment by Arlen Yoder — July 28, 2012 @ 10:26 am
My prayers are with you and your parents.
Comment by Mark Oliver — July 28, 2012 @ 11:14 am
This touches me deeply. I too know the pain of seeing loved ones being taken from us a bit at a time. My Dad suffered from dementia for many years before his death almost 3 yrs. ago, now we are caring for my Mom who is in end stage of Alzheimers. No one knows & understands like those who have walked in our shoes. God’s blessings to you as you prepare to see your Mom again, and may His Grace be sufficient.
Comment by Esta Schlabach — July 28, 2012 @ 12:35 pm
I cried & cried while reading this! My mother passed away from brain cancer when I was 18 and only recently lost her mother (my grandmother) to Alzheimers. Please do go see your mom. From what I understand there are brief windows in time when they grasp some piece of the present. I was at Grandma’s side while she lay on her deathbed when she suddenly smiled a big bright smile and folded her hands in prayer on her chest the way she always did when we prayed before eating! We can only cry tears of joy as we imagine what she may have seen!
Comment by Henry — July 28, 2012 @ 2:36 pm
Thank you for sharing this with all of us, through tears I send my thoughts and prayers to you.
Comment by Erin — July 28, 2012 @ 7:04 pm
Ira, I remember meeting your mom and dad in California in 1995. I think perhaps the disease was just beginning. She’d gotten a tote bag to carry stuff in but it had a logo on the outside that she was worried about. I suggested she turn the tote inside out. She thanked me profusely and did so. Later we were with a group of people and she mentioned the tote saying “someone” had suggested turning it inside out. She didn’t remember that it was I who had made the suggestion. We visited with them a few times in Bloomfield in the doddy house and shared a meal with them there. I never saw any other signs of Alzheimers after that when we’d see her, but then she may have been on “autopilot”. I remember your mother’s smile which was so beautiful. I’m sitting here crying as I read your column. I’ll pray for relief for her. It’s time. Stay strong.
Comment by Joyce — July 29, 2012 @ 12:18 pm
That was so well written and coming from a very personal place so I hope it helps just sharing the struggle you’re going through with your “listeners”. It will be one of the hardest drives you’ll ever take and one you’ll be most proud of yourself for doing. She may have no recognition of you, and even if hugging isn’t something you’re comfortable with, do it anyway. Don’t think – do.
My mom was a hospice nurse and I told her I understand people need to pass away, but I don’t understand why they have to suffer so much before they do. Her answer still sticks with it – his or her job here on earth isn’t finished yet. Even in an unresponsive state, others are responding and being changed. Fair? Absolutely not, but as you said, His ways are not our ways. It’s not strange, by the way, hoping the Lord will release her from suffering. That’s because you love her.
Thanks for sharing that – now I need to go get another Kleenex. That “thank you” she wrote did me in.
Comment by BethR — July 29, 2012 @ 3:02 pm
Your blog would not be complete without mentioning at least some of the angels without wings (fellow human beings, not of her own flesh and blood) who have so graciously helped Mom along the way. Wilma Troyer, a widow and family friend, stayed with her in Fla., showering her with love, the only language Mom understands. Wilma had experience in that type of care giving, no certified nurse could have done it better. Elizabeth Wengard, a neighbor comes every day to check her blood pressure, etc. Mary Luthy, Fannie Mae Wagler, and the list goes on. And Marvin Mast a local (in Kansas) owner of Golden Rule travel, always helps us figure out our Canadian plane tickets. Angels all of them..but the bravest person of all is our own dear sister Rosemary. She bravely goes on day after day with the help of her daughters, Edna, Eunice, and Naomi, in what cannot be easy….God Bless them…….
Comment by Rachel — July 30, 2012 @ 9:16 am
Thank You for your writing and the blessing of your words. God’s comfort to your whole family at this time.
Comment by Susan Lance — July 30, 2012 @ 10:48 pm
It’s all so brutal…
Comment by Reuben — July 31, 2012 @ 5:02 am
My family still denies that my mother had Alzheimers, even after it was written on her death certificate, just a few short months ago. I was left to care for her as my siblings fled home years prior. Living with the memories is difficult…more than difficult. I have no words of comfort for you as Alzheimers is brutal and cruel. Your dear mother does not deserve this.
Comment by Ames — July 31, 2012 @ 7:18 am
Having met your mom, Ira, this is especially touching. There’s nothing I can say, really, in response but I want to acknowledge what it did to my heart. When you come to Ontario in August, I pray that God will grant you and your mom a special moment, even if wordless.
Comment by Trudy Metzger — July 31, 2012 @ 1:19 pm
Ira
I’m sorry for you and your family, I will keep you all in my prayers, especially your mother. There is not much for me to say that would be a comfort to you, other than I have been down the same road with my mother, and even then, each situation, I’m sure is different.
Comment by Warren — July 31, 2012 @ 8:07 pm
This is a sad story, all too common.
Comment by cynthia r chase — July 31, 2012 @ 8:35 pm
You are right Ira, Gods thinking and timing are not ours, but he always knows best and his own. May God keep you and your family in his loving arms until we are all called…….blessings.
Comment by Lissa — August 3, 2012 @ 8:49 pm
I’ve never met the Wagler family, but this touching account pulls on the heart-strings of any normal person. Especially those with elderly parents. And although I try to phone my Mom once a week, this story makes me want to make the 12 hour round trip to visit and give her another hug.
May it be the will of the LORD to, someday soon, call Mom Wagler unto Himself where all is New. Somehow, while yet in this old fallen world and body, God’s feeble and infirm children still inwardly trust in Him. He continues to grant them mercy in spite of their outward befuddled state.
Psalm 73:26 “My flesh and my heart faileth: but God is the strength of my heart, and my portion for ever.”
Comment by e.s.gingerich — August 4, 2012 @ 5:16 pm
“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.” Well, that says something. As does the “Thank you.” Each culture has its points, at least we can say that.
I’m blessed that you so honor your parents. People who criticize your book without reading it should understand how you honor the Amish as well, as real people like the rest of us.
May God bless your time with your Mom.
Comment by LeRoy — August 4, 2012 @ 6:18 pm
I know what you are feeling as I just lost my Dad in June after helping care for him the last several years. He had Alzheimer’s and it was such a blessing when the Lord took him home. There was certainly nothing for him in this life anymore. Blessings to you as you continue this journey.
Comment by Edith — August 4, 2012 @ 7:41 pm
We lost my mom’s mom to Alzheimer’s/dementia. It is a cruel disease and a horrible thing to watch happening to someone you love. I’m sorry for your family, for your mom.
Comment by Ann — August 6, 2012 @ 3:16 pm
You may want to try serving your mother coconut oil in her food. It is limked with reversing dementia. Ingles has it on the top shelf, in plastic cans, like Crisco. Thanks for sharing!
Comment by Lee — August 8, 2012 @ 1:09 am
Ira, I left my thoughts about your book on your FB page, not being familiar with blogs, I did not know it was here.
Thank you for so eloquently sharing your feelings and thoughts in the book and about you beloved mom.
I too, experienced the sadness of seeing my dad’s mind deteriorate to hardly knowing his own children.
Comment by Carolyn — August 15, 2012 @ 3:25 pm
Ira,
Our Moms were special! I have priceless memories of both of them. A year ago my Mom came to see us, and little did I think it would be our last time. Now she’s waiting to welcome your Mom, one of her friends to her new home in heaven.
Comment by Rudy — August 20, 2012 @ 11:52 pm
I listened to your book and enjoyed it very much. It brought me to your website where I’ve been browsing your blog entries. This one hit home as I lost my mom to Alzheimer’s last year. Last week would have been her 88th birthday and yesterday would have been her 53rd wedding anniversary. She and Dad are together again and for that I’m grateful.
It was so hard seeing her in the nursing home during her last months. It was much as you describe in this post. The blessing for her was that she could still get around and enjoy visits until Just a couple of months before she passed. She would say, “I don’t remember it, but I always have a good time!”
I pray God’s comfort for you and your family. His Peace be with you.
Comment by Margaret Loots — September 20, 2012 @ 11:10 pm
“This time, I would hug her”. How beautiful. There is nothing like the bond between a mother and son.
Comment by Francine — October 10, 2012 @ 12:00 am