A Long Good-bye (Part One)

28 02 2013

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“Who’s that girl over there?”

I’m standing at the stove making tea. Mom is a couple of feet away, sitting at the kitchen table with Dad.

“That’s our daughter,” he tells her. “Jeanne.”

And this is the new reality. Her face a distorted mask of fear, confusion, and frustration. The endless stream of questions that circle around and around but never land — like a bewildered dove, lost in the fog, and wasn’t there once an ark and a warm nest, and why can’t I find my way back there?

These eyes that embraced my newborn face, that delighted in my first steps — that read aloud innumerable pages, the words inviting me into Alice’s Wonderland and the Secret Garden and the Hundred Acre Wood, expanding my horizons and giving my imagination wings. These once passionate eyes, that smoldered at my willful disobedience and glowed at my simple accomplishments, now dull. Suspicious. Distant.

Or angry. And she lashes out with cruel, unfiltered words, mocking, accusing, working herself into a fury. “I don’t understand any of this! I don’t need a babysitter! Why don’t you just go home! Go home!”

I steady my voice, try to explain that I’m not there to babysit but to keep her company, and I’m not going home until Dad gets back. She snorts her disgust, snatches her walker, and retreats to her last safe place, hobbling into her bedroom, disappearing into the oblivion of sleep. And I collapse on the couch, my heart all one aching prayer. Jesus, meet her in her dreams. You know what she needs. Please, come Lord Jesus, and meet her in her dreams.

Once upon a time, I wrote a song just for them — a thank you for countless gifts given and a prayer for only good to come — and George and I recorded it on my twenty-first birthday. The chorus echoed a childhood bedtime routine, a dialog that played out night after night, with their, “We love you, Jeanne,” and my, “I love you, too.” Then “Sweet dreams, now” and “Same to you.” And I’m back there in my mind, bowed bedside on little knees, praying the Lord my soul to keep.

And if I die before I wake?

When we’re alone, she often asks me if Dad is dead, but one day after I said no, she asked, “Am I dead?” And I wonder, can the fog get so thick that waking feels closer to death than sleep?

The song’s last chorus ended with, “It’s not just Jeanne loving you, sweet Jesus loves you, too. And I pray He’ll bless Mommy and Daddy forever, Amen.” She played that recording for anyone who would listen; played it again and again until the cassette tape wore out, and there wasn’t another copy, and how is it that we treat our memories so carelessly, as though they, like God’s blessing, will last forever?

Sweet dreams, now.

Oh, God. Please.

I spend part of almost every day with her, but these furtive, frightened eyes, they rarely recognize me now. Rarely, yes, but there are still moments when I crack a joke, and she laughs out loud, and she turns and looks at me — sees me — and the happy years dance in her eyes again, like a hint of a wisp of the splendid energy that marked my childhood home, where banter begot banter, and we laughed until tears flowed and our tummies ached.

It flickers there, a spark, and I grasp the moment for what it is.

A gift.

Because I’m learning that each moment is the only one, and I beg God for wisdom, for creativity, for the right words that will comfort and calm, but all He keeps whispering is enter these moments with her. So I lean hard into grace, and I try.

We sit in the same kitchen where seven-year-old me packed her lunch-box — the pink one with the black poodle on the front — and it was PB and J on Mrs. Baird’s Bread and Lay’s Potato Chips and a baggie filled with Chips Ahoy. I open the pantry and can almost see the colorful row of cereal boxes — froot loops, and that silly rabbit, and I could honestly use a few lucky charms about now — but today those shelves are much less crowded and chaotic. Pistachios and prunes. Olive oil. A bottle of wine. This kitchen where she worked the NY Times crossword puzzle every morning, and slapped together hamburger helper for dinner, and all six of us sat in the orange molded-plastic chairs around the Formica-topped table, arguing or singing or sharing adventures from the day. It was loud and safe, a place where children were not only seen, they were heard and celebrated.

I was seen. Heard. Celebrated.

And now, almost fifty years later, those orange plastic chairs and that same round table remain — but the children are grown and have children who have children, and she sits alone in her place, her eyes shifting here and there, and she asks me, “Is this our house?”

“Yes,” I say. “You and Dad live here together.”

She looks again, slow, searching deep, and when she asks the next question, my heart is as tortured as her face.

“Why don’t I recognize it?”

I don’t answer, because I don’t know.

I don’t know why God leads some of us into dense fog at the end of life’s journey. I don’t know why the Alzheimer’s-afflicted suffer a long, slow fade, slipping farther and farther away, while those who love and care for them watch and grieve and offer comfort that can never cure. But who am I to question His goodness or demand that He give different gifts?

No, I don’t know the why, but I know the Who — that there is a God who knits us together in our mothers’ wombs and numbers our days, and no, I’m not equal to this, but I haven’t been equal to a lot of things God has chosen for me, and He has proven Himself faithful and immeasurably more in them all. I’ve learned to trust His ways — to keep my eyes open for the beauty that He always creates out of His children’s brokenness, the beauty that He must create because He is Redeemer, and everything He touches He makes free.

I’m not equal to this, and that is part of the gift. His strength in my weakness. His sufficient grace. If I could see my way clearly, what need would there be to reach for Him? So then. Even the fog is a gift.

I enter these moments with her, and I can’t see the next step in front of me, but this one thing I do have.

I can feel the pressure of His hand in mine, and it is enough.

* * *

{Dear friends, I haven’t written much about my mom’s Alzheimer’s, but lately I’ve been sensing that I need to wrap words around this journey. I don’t know how often I’ll come back to it, but future posts in this vein will also be titled A Long Good-bye, mostly for the sake of anyone who would rather not go there. Believe me, I know it’s hard. But this is where I live right now, and words are the way I process. As I expected, writing this post was cathartic for me. I pray it’s a blessing to someone else, too. Thank you for understanding.}


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59 responses

28 02 2013
Mary DeMuth (@MaryDeMuth)

So very very beautiful. Thank you.

28 02 2013
jeannedamoff

Thank you, Mary, my love. xo

28 02 2013
Karen Zacharias (@karenzach)

J- It is in entering the sufferings of anyone that we are best able to hear the heartbeat of Christ on the cross.

28 02 2013
jeannedamoff

Yes. And you know this well. Thank you for entering and listening and telling your story so faithfully, dear Karen.

28 02 2013
Joyce Wagster

Keep writing and sharing. My precious Aunt had alzheimer’s and lost the part of her brain that told her she was hungry. I answered many questions over and over within 4 years and heard stories over and over and cherished each one….She was such a wonderful person who was always so good to us growing up. Each memory is precious and today in heaven she is free!

28 02 2013
jeannedamoff

Thank you, Joyce. We are dealing with loss of appetite, too. As you know, it’s a long, hard road, but I thank God with you for the cherished memories of your dear aunt and her glorious freedom in Heaven. He makes all things beautiful in His time.

28 02 2013
kathy white

Jeanne so blessed by your words of love. I sat at a nursing home with my aunt last year and asked God why. I watched ladies fold their napkins for lunch 10 times over. An older man repeat the same sentence over and over. Another women shout from her wheel chair as she circled the area.
The LORD gracious replied to me, Kathy you are seeing a picture of grace…they are not aware of the burdens of family, the world ect…this too is from Me : My grace is sufficient…I AM El Shaddai…this is for you Kathy!
thanks Jeanne

28 02 2013
jeannedamoff

How kind of the Lord to reveal this to you! Thank you so much for sharing, Kathy. May our eyes always be open to His gifts.

28 02 2013
Jeanette Webber

Thanks for “wrapping your words around this journey”. I am preparing for my day, which includes time with my mom. Will she think I’m her mom today? Will she smile, or be mad? Will I have to take a bite of her food in front of her so she knows it’s safe for her to eat? My dad has always been the caregiver but he passed in July. I didn’t see that coming. My mom now needs 24 care and I keep thinking that I’ll get numb to the pain of her anguish and confusion, but it hasn’t happened yet. So, today, I am praying for wisdom to enter into the fog to honor her. I am also praying that whatever happens today will bring me closer to Jesus. Blessings and strength on your day and your heart.

28 02 2013
jeannedamoff

Oh, Jeanette! How I hear you! Dear Jesus, be with Jeanette and her mother today. Give her grace for every moment, and wrap your peace around her heart. Thank You for sisters, for the body of Christ, for the kindness of comrades whose faithfulness in the valley spurs us on.

Much love to you, Jeanette. So much love.

28 02 2013
Stephanie

I have worked as a nurse in various states and facilities. I once worked in a nursing home for ministers, pastors and missionaries. I am a pastor’s child and a pastor’s wife. I watched my parents serve and sacrifice for years. When I saw that there were those in the nursing home who had faithfully served God for years, and now they were here, bodies strong and minds…. I was angry. Was this their reward? Is this how He took care of His servants? His children? As I continued to work there, I saw more. They had anxieties. Anger. Fear. They didn’t know their family. Some didn’t know who they were. They had nothing…. But, they could quote scripture. They could sing hymns. Something gets them started and they join in. They finish it. They didn’t know, couldn’t remember, anything,…but God, Jesus, His words, His love. They would lose all…but God. I learned that this is not their reward. It is their last battle. Their last trial. And God is with them. He is with them when no one else can be. Their reward is not here. There is still more for them to endure here. Their reward is there. Their reward is God. And great will be their reward. This last will add yet more to the reward of the faithful. But, in the meantime. I never saw any of them lose HIM. He kept them. He keeps them all the way through. And delivers them to Himself.

28 02 2013
jeannedamoff

Dear Stephanie, thank you for this. Thank you for serving the least, for refusing to land on bitterness, and for letting God show you the deeper truth of His upside-down kingdom. And thank you for sharing your insights with me and anyone else who reads your comment. Yes, He keeps. He delivers His own to Himself. Nothing can separate us from His love. Nothing. What a wonder.

28 02 2013
Linda Chontos

Oh Jeanne. I weep with you friend and rejoice that in and through it He holds your hand tightly in His. How could we walk through such things otherwise? I’m thankful you’ve written with such a pure, honest heart. It blesses and encourages. I look at my very elderly parents and know the blessing.
This “never-the-less,” this yielding when we don’t understand and would really rather not walk the path He has chosen for us for a season has been played over and over again in my heart in recent days. It is this that brings us to the “good plan,” the one where we are made more like Him. We only walk it by grace.
Please know I will daily pray for grace and strength and for moments when there is that special light. Praying that His peace and presence will fill your heart.

28 02 2013
jeannedamoff

Sweet Linda, how can I thank you for your tears, your wise words, and especially for your prayers? What a gift they are! Much love and gratitude to you, my tender-hearted friend.

28 02 2013
Patricia Hunter

You’ve been in my mind and on my heart for days, Jeanne, I’ve wondered – hoped – if you with your exquisite writing would be journaling this season. It is a bittersweet season (the hard eucharisteo, as Ann would say) – a sacred privilege to honor your mother in this way – to love unconditionally this new someone – this woman wandering in the fog who is but a shadow of the mother you’ve always known. In the long-goodbye season of my daddy – that for about two months overlapped the shorter goodbye of my mama – I camped out in Isaiah 35…that concludes with this:

“And the ransomed of the LORD shall return
and come to Zion with singing;
everlasting joy shall be upon their heads;
they shall obtain gladness and joy,
and sorrow and sighing shall flee away.
Isaiah 35:10 ESV”

One day, dear friend. One day.

28 02 2013
jeannedamoff

Dearest Patricia, to be in your mind and heart is a holy gift. Thank you for encouraging me to write — to drink fully the bittersweet and not to hide my own heart from its pain. I know it’s best. And thank you for sharing His Words that declare unshakable truth. One day indeed! So much love to you.

28 02 2013
Holly Cornwell

Thank you for writing these words, Jeanne. You know they are close to my own heart. As you say, I can truly feel God holding my hand through this whole journey and I am so very grateful for that.

28 02 2013
jeannedamoff

You’re welcome, Holly. I do know they are close to your heart, and I’m grateful for you, your family, your friendship. Let’s have coffee again soon? xo

28 02 2013
Sharon O

This is so hard my own mother is in the same situation only she needs full assist care and cannot walk alone and now cannot feed herself. Sometimes she knows now time but rarely. It is a terrible thing to watch. Hoping for you some peace and continued clarity and calm.

28 02 2013
jeannedamoff

Sharon, I’m so sorry. Yes, it is a terrible thing to watch. I echo your sweet prayers for me back to the Lord for you. May He give you peace, clarity, and calm, and may you know the sweet mystery of His grace for every breath. Love to you and your mother.

28 02 2013
kingfisher

I’m so glad this writing was cathartic for you, Jeanne. God working his blessings in you even in the midst of your grief and helpless-not-knowing-what-to-do.

I miss your writings, whatever the subject, when you’re absent from your blog for a while. Thank you for having a tender heart toward God, and for your thoughtful insights.

“I’m not equal to this, but this is is part of the gift.”

Such comforting words to me. I went through the “thing” with my parents a number of years ago, but today, I found comfort in your statement for another reason. My own serious health issues leave me helpless to know what my future will be, what I need to do today to keep going. The “hows” of getting through life, unsteady me. I’m not equal to knowing how to live with several diseases, the successful treatment of one which worsens the effects of another. But this razor’s edge, just as I know it today, uncertainty about everything, is a gift from God? Halleluliah! He knows the way, even though I don’t.

28 02 2013
jeannedamoff

Such a tender ache in my heart for you! Wishing I could rescue you from “this razor’s edge” and yet trusting God’s severe mercy even in this. Oh for eyes to see — for you, for me — His hand, His fingerprints, His sovereign grace that refines and prunes and presses hard always and only with good, holy, loving purpose. He knows the way. Yes. May His joy be your strength. Much love.

28 02 2013
Tatia Cook

As I read your words that so eloquently portray the vast expanse of emotions characterizing this season, my arms longed to hug you and my heart ached for you, Jeanne! These words…”No, I don’t know the why, but I know the Who…” and “If I could see my way clearly, what need would there be to reach for Him?” – at these, my heart rang out a resounding, “Yes!” Thankful that your writing is cathartic for you; it is, mostly certainly, a BLESSING to us. Thankful that you are aware of His Presence ever with you. Praying for a double portion of that Presence to overwhelm that house in ways that we can’t even imagine. Praying, too, that in those moments when you are clinging to Him for all you are worth and you still feel like it’s too much – praying that He will send others to be the Hands and Feet of Jesus to you all and to speak His Words of Life over you. To remind you of what you know to be true and Who you know to be The Truth! Much love 🙂

28 02 2013
jeannedamoff

Dear Tatia, your prayers are like a holy anointing oil on my head. Amen and amen. Thank you with all my heart.

28 02 2013
terri burton

Please keep writing. Helping us to understand what may lie before us is a gift.
Thank you.

28 02 2013
jeannedamoff

Thank you for the encouragement, Terri. It means so much.

28 02 2013
pastordt

So beautiful, Jeanne. And so terribly familiar. We’re in the midst of two long good-byes, one for each of our moms. And it is a kind of piece-meal death, isn’t it? Punctuated by ever-briefer moments of life and light. I’ve written about it several times, about how hard it is to watch, how hard it is to live, how hard it is to love well. And every time I put fingers to keyboard and let the pain out, the Lord speaks to me, blesses me, allows me just the briefest window into how he is redeeming even this hard horror. Even this. I have a tab at my blog about it all and here’s a link to one I wrote a few months ago. http://www.dianatrautwein.com/category/the-journey-with-mom/ I think you’re seeing some of the same things I am in this process – the bending-low Jesus we love – he bends ever lower for these dear ones as they fade, fade, fade away. Love to you as your journey, Jeanne.

28 02 2013
pastordt
28 02 2013
jeannedamoff

Thank you so much, Diana. For your heart, your honesty, your faithful pursuit of Jesus. When weariness trumps compassion, I will hold the image of our bending-low Jesus writing forgiveness in the sand. Beautiful, true, and so needed. Praying grace for you and both of your moms. Much, much love.

28 02 2013
Jean

Thank you. Your honest thoughts and reflections remind me to love my Mom right now … even though she doesn’t know me … because these are the moments I have left with her and I don’t want to miss any of them. The lesson? Loving as God loves me … even when I don’t remember Him.

28 02 2013
jeannedamoff

Ah, yes, Jean. So much of the time I see in her a reflection of my attitude toward God — refusing to trust because I don’t understand, or becoming confused and upset because He doesn’t give what I’m convinced I should have. It’s humbling, isn’t it? As we labor to love well, may the Lord continue to teach these precious lessons. Blessings to you and your mom.

28 02 2013
spaghettipie

I love you, my friend.

28 02 2013
jeannedamoff

I love you, too, Tina. xo

28 02 2013
robin sturm

Followed a link here from Anne Voskamp’s blog. This was beautiful. I don;t know you, probably most of your readers don’t, but you just invited us in.
Into a painful, confusing unexplainable place. Thank you for your honesty. Thank you for the hope. Thank you for sharing the power of His hands.

robin sturm

1 03 2013
jeannedamoff

Thank you, Robin. I’m so glad you stopped by. Even if we don’t know each other, I’m often amazed by the ways Christ strengthens His body, and I treasure the encouragement and prayers of every dear soul He sends to this little corner of the bloggerhood. Your kind words are a gift to me today. Love to you.

28 02 2013
Pam OBrien

Oh, Jeanne. This had me crying tears with you. When you said, “…come, meet her in her dreams” it reminded me of my prayer for my dad. For him, in his final days when the cancer gained momentum and took the lead, he slept more often than not, and my prayer was, “please, Lord Jesus, hold him while he sleeps.” However, he knew me, loved me, blessed me… until he left me. I’m sorry it’s not that way for you. I don’t know what it’s like – what you face daily, but my heart bends toward you. Praying for you and for mom.
(I do know cathartic, though. I started blogging when dad was in his final months. Words help. Happy to walk the journey with you.)

28 02 2013
jeannedamoff

Thank you, Pam, for your tender tears and prayers. As hard as it must have been to walk through cancer with your dad, I’m so thankful with you that God gave you sweet communion till the very end. And, yes, there is powerful release in searching for and finding words. Then, when others read and respond, it’s almost as though they take some of the burden onto their own shoulders. Such a gift of grace. Thank you for walking with me.

28 02 2013
kittypalmer

I think it can be a help to many to see how you navigate this time in your life. Keep sharing as often as you can. I will share this with those who are going through the same thing. Thank you and my God bless you in this journey.

28 02 2013
jeannedamoff

Thank you so much, Kitty. I know it strengthens my hands and heart when others on a similar path (or any difficult path) share the ways God is meeting them in their journey.

1 03 2013
Kathy Malesovas

Thank you for sharing. You express yourself so well. I just can’t imagine how very, very sad and difficult this is for all your family. I’m thankful that through your faith God is giving you the strength to deal with it. You’re all in my thoughts and prayers. Love and blessings, Kathy

1 03 2013
jeannedamoff

Thank you, Aunt Kathy. Your love and prayers make a difference. I’m truly, deeply grateful for them and for you. Much love.

1 03 2013
Jaena

Beautiful and vulnerable. Thank you for sharing this. I have not experienced this particular grief on my journey but will indeed testify that God can redeem every heartache and loss for His glory. God bless.

1 03 2013
jeannedamoff

Thank you, Jaena. You are right. We don’t all suffer in the same ways, but all of us need a Redeemer to gather up the shards of our brokenness and to create from them a glorious work of art. Blessings of His peace and presence on your journey.

1 03 2013
FlowerLady Lorraine

Oh dear Jeanne ~ May you continually feel the love, strength and peace of Jesus surrounding and flowing through you at this time.

My heart aches for you.

FlowerLady

1 03 2013
jeannedamoff

Thank you, FlowerLady. And amen to your sweet prayer. I so deeply appreciate every prayer offered for us, and I do feel God’s presence, even when my heart is most sore. This is pure grace.

1 03 2013
Veronika Weiner

Thanks for this very personal part of your story. I deal since 19 years with three children in a jordanian family who have/had Batten disease and just brought out a book about our mutual experiences “The Hidden Treasure”.
Only one of them is still alive, now 23, his brother reached 19 and his sister 28. Till the age around 9 -10 they have been “normal” and then it started, becoming blind, loosing many abilities, speech, movement etc. except hearing. We enjoy daily a couple of hours, traveling to the past and live very much in the present moment. Since we are all believers, he says often “Jesus is the best doctor”, the only word there coming from him is “Jesus”.
Dealing with these kids and their family God used for me as an eyeopener, how great HE is and how much more than we can think is included in His creation and plans! Even in what we call “suffering” He has a hidden treasure! May He show this to you and give you even joy in this journey!

1 03 2013
jeannedamoff

Oh my goodness, Veronika, what a beautiful ministry God has called you to, and how precious these truths He is teaching! We have an adult brain-injured son, and God has used him to teach us many similar lessons, opening our eyes to understand how different the world’s view of “greatness” is from God’s. Thank you for your faithfulness to pour yourself into these children, God’s treasures. May the Lord use your story to open many eyes and set many ripples in motion.

1 03 2013
Robin Lawrimore

You wrap words so nicely, Jeanne. You wrap the rest of us up in there with you. Blessings of peace even without understanding. Love you.

1 03 2013
jeannedamoff

Thank you, Robin. Somehow, by God’s sweet mercy, even the long-distance companionship of online friends lightens the load. Love to you, too.

1 03 2013
Lisa @besidestillwaters.blogspot

You have written for all of us who walk this particular road loss. How I cherish every memory such as you have described, that cascaded across my mind even though Mama could not grasp any of them at the time. I kept telling her I would remember for her. I would tell her stories. They. are. not. lost.

1 03 2013
jeannedamoff

This is such a mercy. You and your stories were a gift to your mother. And, no, they are not lost. They are etched in eternity. Amazing grace.

2 03 2013
vicki

Dear Jeanne,
I’m always grateful when I read your words. Grateful that you write about real life and how our Lord helps us through each day of each season. Thank you. Praying for you all as the Lord brings you to my
remembrance.
Love,
Vicki

2 03 2013
jeannedamoff

Thank you, Vicki. How kind of the Lord that He uses my stumbling around for understanding to speak to you. It makes the bittersweet less bitter and more sweet. Thanks so much for your prayers.

Love, Jeanne

3 03 2013
Adrienne

I don’t have anyone in my family with Alzheimer’s, but this is still worth reading nonetheless. It reminds me of my hardest times when we need to live this moment for this moment is all we really have.

3 03 2013
jeannedamoff

Thanks, Adrienne. You’re right. We all walk different paths, but God’s design in them all is to bring us close to Himself, Immanuel, God-with-us. He is here, now, and we’ll miss Him if we refuse to enter the moment we’re in. I’m learning this lesson again and again. Love to you.

3 03 2013
Linda Gilmore

I read this today and prayed for you right away and will keep praying that God will give you and your family the strength, wisdom and patience you need. These times are hard, but God is faithful.

3 03 2013
jeannedamoff

Thanks so much, Linda. Your prayers are truly a gift. Yes, our God is faithful. His mercies are new every morning. Love to you. Miss you, friend.

5 03 2013
Mike

That is so incredibly beautiful and wonderfully-expressed that I am left almost speechless. I hope you can receive what I suspect is the sentiment of many: “Thank you for this addiitional labor of love–the sharing of the story of your other, daily, ongoing labor of love.” God be with you.

5 03 2013
jeannedamoff

Thank you, Mike. I’m deeply touched by the tender outpouring of support from so many. God be with you, too.

Your comments are a gift. Please know I read each one with gratitude.

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