January 03 Archive

Give sorrow words; the grief that does not speak whispers the oe’r fraught heart and bids it break.” (Shakespeare)

It is morning and the sky is still dark.  I am beckoned to enter the world again for a new day, and I fight it.  It is not long before I hear her footsteps.  They travel up the stairs and into her room.  They stop.  I find her sitting on the end of her bed, staring in the mirror, for what may have been ten minutes, but to her is the first second, first glimpse at her own image.  I try to comprehend the complexity of her mind, but it is so difficult.  What does she see?  What does she feel?  What are her thoughts?  Will I ever really know?

When I was in high school, I enjoyed the writings of Washington Irving.  I thought I understood his work, but I really did not get it at all.  Irving wrote, “The sorrow for the dead is the only sorrow from which we refuse to be divorced.  Every other wound we seek to heal, every other affliction to forget; but this wound we consider it a deep duty to keep open; this affliction we cherish and brood over in solitude”  (The Sketch Book).  Deep down inside of me, I cannot seem to let go of this wound, this deep ache of recognizing that my mother is indeed dying.

It is an unusual experience to grieve over someone with whom you visit daily.  Someone whose voice you still hear, and hands you still hold.  Someone whose warmth you can still feel and presence sense.  But, slowly, over time, we are losing her.  And, I think the enormity of this statement has been tearing into my world these last few months, as her words become fewer and her eyes become more and more distant. 

This was all affirmed on Christmas morning, when I realized that she no longer has any memory of Christmas… of the planning or traditions, of our family experiences.  Of course, Christmas is not about families and traditions, but there is something about familiarity that is so comforting.  Christmas each year is like a footnote in my brain that marks the progression of mom’s illness.  Why?  Because it was three years ago, a week before Christmas, that we were told of her diagnosis.  And, she has changed so much.  And, I fear what next year may bring to our family.

It is time to face the uncertainty of a fallen world, time to recognize that this entire experience will indeed be painful.  I have to face a great deal of certainty and uncertainty.  It is a challenge to acknowledge that my parents will not always live in this house, and I will not always have a “home” to return to at a later date.  Time to reconcile the fact that my mom may not understand the meaning of my wedding, or live to see my children.  One day soon, she may not even know me.  How does one face such a thing?  How do we live knowing that, and yet continue to press on? 

I have been greatly comforted recently by C.S. Lewis’ experience in facing the death of his wife, Joy.  In ­­A Grief Observed­, Lewis writes, “No one ever told me that grief felt so much like fear.  I am not afraid, but the sensation is like being afraid.  The same fluttering in the stomach, the same restlessness, the yawning.  I keep on swallowing.”  Lewis understood the grieving process.  He watched his wife die of cancer.  He took care of her.  He selfishly longed for her to return to him after she was gone.  It comforts me to know that he felt some of the same things I have.  And, yet both he and I have been comforted and strengthened by our good and faithful God.  And, Lewis made it through, and so will we.

What is the difference, I have often wondered, between the grieving of a believer verses a non-believer?  “How can I be a testimony through this?  What hope do I have to offer?”  The only hope I have to offer is the truth of God’s Word and the hope that has come through Jesus Christ.  Have I felt His comfort?  More that I would have imagined!  Has He restored my hope?  Yes!  Do I struggle daily?  Often.  Does this change who God is?  Never.  He is the same, regardless of what changes in my life.  He has been my hope and strength and I am so thankful.

So, it is night and the sun has gone down.  She is in bed and I go to kiss her goodnight.  She still says the words, “I love you, Jocie.”  And, I tell her I love her too.  I go to bed at night comforted by the very One who can identify with my every weakness.  And, I sleep wonderfully. 

“I rise before dawn and cry for help; I wait for Thy words.  My eyes anticipate the night watches, that I may meditate on Thy Word.”  

(Psalm 119:147-148)

November 02 Archive

A few weeks ago, my mom had an appointment with the Alzheimer's specialist at University of Penn.  He updated mom’s diagnosis as being “severely impaired”. Certainly, my dad and I have noticed this for a while.  But, there is something about the title, “severely impaired” that carries a certain stereotype.  Think in your minds… we can all picture it.  Severely impaired has a completely negative connotation, offering little hope on the positive side.

And yet there is this indescribable joy that fills my heart when I am with my mom, my dear “Turtle”!  She is the sweetest thing.  God has truly blessed us these last few weeks with precious times.  On any given day, people may ask, “Jocelyn, how is your mom?”  And in their eyes I see sympathy, aching hearts, curious minds… and depending on the day, my response may differ.  But, regardless of my daily responses, deep down I am so thankful for all that we are going through in these moments.

There are days when I wish that my mom could stand in the kitchen by my side and offer encouragement when I have messed up a recipe, or give me guidance on how things should be done.  There are those lonely nights when I wish she could talk with me till I fell asleep about all that is on my mind.  But, it is in these moments that I have found my complete comfort and rest in the Lord.  He knows exactly what He is doing!  I have never before felt such peace and security in my relationship with our eternal God.   

I must tell you that my mother is one of the most positive, dear people I know.  Last night, I returned home from having Bible Study with S and my mom was in bed.  I ran up to her room and said, “Turtle, I am home…”  She looked at me and said, “Oh, Turtle, you are so beautiful!  Did you have fun with S?  You like him, don’t you?  I do too.”  And she smiled.  Every day she showers me with hugs and fills our house with laughter.  Tonight she had us roaring with laughter around the dinner table.  She is so sweet and innocent.

The other night, my mom saw my best friend in a big, warm coat.  She looked at her all bundled up and said, “Sponge… you look like a sponge!”  Perhaps not the most encouraging thing to say, but we were all laughing so hard!  My mom says the things that most people never dare to say, and there is something so blissfully refreshing about that. 

I will not lie in saying all is wonderful.  There are nights when being home is the last place on earth I’d rather be.  Nights when my mom fights us on taking a shower and she cries and stomps her feet.  Nights when we wonder how we will ever get her body clean before a good night’s rest.  But, I am blessed to have faithful and devoted fathers, both in Heaven and on earth.

So, I simply leave you with these thoughts tonight.  The thoughts of my dear mom. She blesses me now more than ever.  God knows what He is doing. 

September 02 Archive

Two weeks ago, my parents went away for a vacation in Maine.  It was the first time in my life that I did not go with them.  At first, I was rather disappointed... to realize that something so routine and constant was ending.  But, the Lord used it as a real blessing in my life.

There is something wonderful about a quiet house.  It is beautiful and refreshing.  I used to find a quiet house unsettling.  I dreaded being alone.  But, in times such as these, silence can be a true haven.  So, when it came, I embraced it… I grabbed hold of it tightly and sighed.

I breathed deep for a week and a half.  The air seemed sweater, clearer, and more refreshing.  I do not mean to sound as if I did not miss my parents, but I think we all needed that time apart.  I could tell that was true when dad came home refreshed.

Upon arriving home, dad told me that mom had five seizures in Maine.  She had not had them for months up to that point.  It surprised me that so many occurred while they were away.  But, dad seemed to handle it all well. 

The day mom and dad came home, I greeted them at the door.  Mom said, “Oh, you are home.  Where have you been all this time?”  I am not sure she remembered where she had been.  There are moments when it appears mom is lost in a game of hide and seek with her own mind.  I wish I could shout above her thoughts and bring her back to me.  But, the game has become her world. 

The house is now busy again.  Sounds fill each room.  Sometimes I just feel like crying when I see mom struggling.  Like when she does not know how to take her socks off, or when her words can not come out; but I know she is thinking deep down within.  I know she is still there and I must cherish her always.

My favorite moments now are when I make mom laugh, or when she tells me I am her beautiful turtle.  I also love when she asks about S and tells me how much she likes him.  And, my sweetest moment of all is crawling into her bed just before I go to my room at night. I smell her sweet scent and give her a hug and kiss.  We laugh together and wish each other sweet dreams… just like she used to say to me when I was little.

This morning in church, mom saw a casual friend and said, “And who are you?”  It was the first time this has happened.  I am only beginning to touch the surface of what this will mean to our family in the distant future.

The truth of the matter is that regardless of what happens each day, there is a great peace beneath all the pain.  This weekend I was reminded that the goal of our experience is not so much to reach a destination with all the answers, but rather to learn and grow in the midst of our experience.  I leave you with the following lyrics from Sara Groves:

         “I feel You here and You are picking up the pieces, forever faithful.

          It seemed out of my hands, a bad situation.  You are able.

         And in Your hands, the pain and hurt look less like scars and more like   character.”

February 02 Archive

You will be my outlet today.  Frustrations are arising within me and have been for days.  This week has been a hard one for dad and I.  Perhaps it has been hard for mom as well; though, we often cannot see into her world as vividly and understandably as we would desire. 

I seriously cannot tell whether this week has merely been a more challenging week, or if mom is really beginning to decline further.  I suppose I have grown accustomed to how it has been lately.  I have been content where she is.  I have made a home in her illness, so to speak.  For months, I have not questioned it or wondered.  All has been well.

But, this week, she could not recognize certain words.  She could not accomplish simple tasks.  She could not follow instructions.  And, she was very easily flustered and confused.  She seems to have lost her place.  She seems to be in a world that she can almost no longer comprehend.  And, this quite honestly breaks my heart.

A friend of mine’s best friend's father is dying right now of cancer.  I have heard the details of his final moments.  Sometimes such moments seem too unbearable for me.  And, yet I know that moment will come for my mom.  It frightens me.  As much as I am learning to face grief, I don’t want to have to face that.  I do not want to hold my mom’s hand a final time.  I do not want to watch the life escape her body.  What will I do? 

There are moments when I can imagine the joy and glory of knowing that mom is finally in Heaven with the Lord.  But, for some reason today all I can do is weep.  I weep for what I see now and for what is yet to come.  I weep because I know that she is changing each day, and it will not stop.  I weep because disease hurts so bad.  I weep because my dad will be alone one day.  I weep because my nephew has to watch my mom decline, and he does not understand what is happening.  And, I weep because in time, I may be an unrecognizable face to the woman who brought me into this world. 

The frustration builds and we remain asking the Lord to give us greater love and patience than we have had yet up to this point. 

“Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort; who comforts us in all our affliction so that we may be able to comfort those who are in any affliction with the comfort with which we ourselves are comforted by God; you also are joining in helping us through your prayers, that thanks may be given by many persons on our behalf for the favor bestowed upon us through the prayers of many.”  1 Cor. 1: 3-4, 11.

In constant need of prayer and grace...

January 02 Archive

It is the night of resolutions, New Years Eve, and I find the need to write you all again.  We are spending the New Year at my mom’s parent’s house in Indiana.  It has been so delightful to observe how much mom enjoys visiting here.

I was beginning to feel like I needed a vacation from my mother, but

the Lord has truly blessed me on a vacation with her.  It has been simply splendid.  We have giggled, laughed boisterously, snuggled, smiled, and conversed.  My mother’s voice is so sweet and gentle, and her pink, cute face and loving demeanor makes me smile.  She has been telling me that I am silly, but she is really the silly one.  She makes me laugh constantly.  Her sense of humor is absolutely hilarious! 

Mom has been thanking me very five minutes for loving her.  Tonight, as we sat on the couch together, she leaned her head on my shoulder and said, “I miss you, Turtle.”  I said, “I am right here.”  She said, “I know; I just miss you because I love you so much.”  And, then she giggled. There is something about her innocence that must bring our Almighty God immense joy.

A couple days ago, I visited with a friend who lives across the street from my grandparents.  My friend’s mother also has Alzheimer’s and cares for her 96-year old mother full-time. Amidst the enjoyable time we had together in fellowship, there were moments when I had to fight tears as I watched her mother.  She has declined quite a bit over this past year.  Every few minutes she would turn to me saying, “My husband will be home soon.  I better go make him dinner.”  My friend and I did not have to look at each other in shock.  We both knew that her husband had been in Heaven for about 15 years.  But, her mother went on to tell me that she had to finish his ironing and had to get back to her home shortly. 

Alzheimer’s creates mazes in the mind that are both frustrating and confusing.  To think of the deterioration and digression… to know that they once were something else, and they are becoming something very different.  Sometimes words cannot fully express it all.  But, friends, I promise you one thing: God is teaching me to “rejoice in all circumstances”.  (The entirety of that mystery is still yet to come.)  I never knew that things could be so amazing.  But, God is truly a comfort and our entire source of hope and joy. 

As the Lord’s grace has met our daily needs, so He will continue to do.  Please continue to pray for us.  May God be glorified in all things because we exist to glorify Him… in all circumstances.

October 2001 - Archive 2

We just arrived home from our vacation in Maine. Since I was little girl, we have camped in Maine every August for two weeks. While there this summer, I was reminded of a conversation that occurred just two years ago. It was a late night and mom and I were at the bath house brushing our teeth. The early signs of Alzheimer’s disease were beginning to become evident to us as a family. I looked at mom with tears in my eyes and a heart full of frustration and said, "Mom, I am afraid that in a few years you will forget me." Mom responded with a smile and a simple answer, "Jocie, I could never forget you. Do not worry about that." She kept on with her nightly routine, but I remember thinking that she was a bit distant from me.

Our bathhouse discussions this year were quite different. When it was time for showers, mom spent the first ten minutes crying because she was afraid that dad and I had stolen her jewelry and would never return it. She would then wait for me to shower. When I came out the door, she said to me, "I thought I lost you… I did not know where you went." Shower time was filled with confusion for mom, but each night when it was over, she would boast of her soft, sweet-smelling hair. She would always make dad touch it when we returned back to the campsite. The Lord gave me the grace and patience to calm her in those confusing moments. 

In previous years, one of mom’s favorite things to do in Maine was to go shopping with her friend Marianne. They would go out for hours searching for treasures to fill our home, or to give as gifts to others at Christmas time. This year, I accompanied mom and Marianne on their shopping trip. Mom told us that the only thing she wanted was a stuffed animal loon. Once she had that goal in mind, she reminded us of it every 2-3 minutes. We found a loon at the very last store, and mom was so thrilled! She held it in her arms like it was her baby, and she kept asking me, "Is this my loon to keep?" I smiled at her and said, "Yes, we finally found the loon… it is very cute…" In those moments, I smiled at mom, but certainly there was an ache beneath it all. A part of me wanted to buy her something that she would have wanted years ago. Money was not an issue in my mind. I felt like running up to the counter and saying, "Show me your best crafts, and I will tell you what my mom would like…" But that part of her no longer remains. The gift would not hold the same meaning. Mom’s joy came in a loon, a sweater, and time with her loved ones.

A neat memory I will have of mom this year was her desire for me to read to her. We read stories, and if I stopped, I would hear her soft voice say, "Jocie, I can’t hear you." I would respond by saying, "That’s because I am reading it over again in my head." She would respond, "Well, I can’t hear you like that." I would smile at her cute, innocent face and read on further.

In the midst of challenges, I saw love displayed by my dad this vacation. He taught me the great meaning of commitment. This standard and perspective I will carry with me everywhere I go. I was reminded that dad is an individual with interests and desires. He loves adventure, God’s creation, hiking, and laughing. He has an incredible mind to offer God and others. Some might say, "Why are you wasting your time? Why don’t you move on?" But, my dad’s commitment to my mom is stronger. He loves her as he always has and possibly a bit deeper, for sure. I am blessed by his example. He has taught me the perfect balance of having joy in the midst of sorrow. We have learned that joy and sorrow are expected daily, and we make the most of both of them. 

Post Script: Perhaps the sweetest memory from camping this year was in the light of morning. I would be sleeping in my tent, all bundled up with blankets, blocking out the world around me. Then, I heard her voice, softly at first, then louder. "Turtle", she’d say, "Turtle, are you going to come out?" I would moan. "Turtle, are you going to stay in there all day? I miss your face" she’d say. I do not know whether or not mom understood the concept of a turtle coming out of its shell, or if she was implying that I was slow. All I heard was her innocent and gentle love for me. That is my treasure. 

October 2001 Archive

Dear friends, you have observed the journal of my thoughts.  You are the lines on which I pen this story.  In fact, you have become a part of the story, because in reading you share in the memories of my family.  

I realized yesterday that the stories I share with you are precious, but momentary.  And, with each changing moment, the stories alter and quite possibly will lessen over time. And it makes me wonder, what will happen when I can no longer tell you the silly things that mom does?  What will happen when I can no longer hear her voice?  What will happen when I can not feel her gentle touch, or smell the scent on her pillow, or see her smile at dad?

The other night, I found myself longing for a womanly influence in our home.  My sister is now married and out of the house, and although my dad tries so hard, it's just not the same.  Thus, the other night, I looked at my mom and wished that she would return to me.  I longed to hear the advice she once gave me.  However, I think in the end, I will miss her presence and love more than her words.  Even though she cannot offer me grand wisdom or motivational words right now, she is near me.  She is my shadow… the one who follows me wherever I go.  She is near and that is comforting. 

Occasionally, I have moments when the Lord reminds me of the reality of the fact that one day she will no longer be here.  Her absence is what frightens me most.  I do not want to lose her.

I know that the Lord’s timing is perfect.  I trust that.  And, there have been many moments when I wished that this would all be over quickly.  But, right now I feel like time is soaring past me.  I feel like each day I lose another part of her.  I see the digression, and I wonder, “Why Lord, why so soon?  Can we have some more time?”  I wonder how much longer it will be.  When will her ability to communicate cease?  When will she forget my face?  The Lord knows best and He gives greater grace with each moment. 

Mom is sitting on my bed right now.  She is holding my stuffed animal, Turtle.  She is telling me, “He needs his mama.”  I'm his mama.  She is babysitting my animals for me while I type.  Her motherly ways are ever-present.

 I’d like to end with a thought by Amy Carmichael.  She said, “I had feelings of fear about the future… The devil kept on whispering, ‘It’s alright now, but what about the afterward?  You are going to be very lonely.’ … and I turned to my God in kind of desperation and said, ‘Lord, what can I do?  How can I go to the end?’ and He said, ‘None of them that trust in Me shall be desolate.’  That word has been with me ever since.”  Amen.

Archive Entry 2: Becoming a Mother

We used to go shopping together on Saturday mornings.  It was a time that we both looked forward to and enjoyed greatly.  I find this very hard to do now.  Mom is unsure of how to lock and un-lock the dressing room doors.  Without instruction, she will walk right out of the dressing room in the new clothes, with no awareness of needing to pay for the items.  Then, once we arrive at the cash register, she is not sure what to do, how to pay for the items.  It is as if she is in a new country with a different currency, and she desperately needs someone to help her. Not only are her counting skills vanishing, but so are her skills in general awareness/memory of former information and ways of doing things.

I look in her face and I see a child.  This is particularly evident when she experiences pain or loss, whether through skinned knees or a broken toy.  She is distraught.  It is as if I am soothing the heartache of a wounded child.  The troubles of life are weighing heavily upon her.  She’s had years of growth and maturing, and it’s as if it has all been taken from her.  She’s fragile, needy, sensitive, and dependent. She has nothing to draw upon in this moment, no wisdom of her own.

I have become a mother, and I’m not prepared.  She is looking to me to fulfill this role but I feel too young.  I still need to learn from her; I am not ready for this.  There are days when I have so little to give; I need comfort.  I almost want to place distance between us because it feels easier.  But, I know this is not the right answer.

Archive Entry 1: Preface

Preface in the journal (written in the end stages). I am spending this evening in our dimly-lit living room, carefully sifting through a box of old photographs.  There are countless photos of my mother, and in this moment, I feel as if I can almost touch the memory of her. 

It is a journey of fascination and sorrow to see the decline in mom’s expressiveness over the last 11 years due to Alzheimer’s disease.  I smile at her vibrancy of life, and I grieve to see it replaced by a blank and distant expression.  The world may view her as an empty canvas, but I know there is more within her.  And when it seems like I can’t find more, I remember.

This is for my family, for all who have prayed for us, and most importantly, for the Lord who enables me to grieve with hope. 

Title: Miss-matched (First Entry)

Our clothes are worn out and exhausted.  I question why Mom is spending so much time in the basement.  After a little investigation, I come to observe that half-way though the laundry cycle the clothes are being prematurely transferred to the dryer, sopping wet.  Even at the close of the dryer cycle, dampness still lingers on the garments. 

I find a cd in the refrigerator, in the oven a cassette, and in the shower, eye glasses.  Miss-matched socks fill our laundry baskets.  Meals are minus vegetables, and Mom cannot recall how to set the dinner table.  Our home is losing its sense of normalcy and Mom is losing a part of herself. 

I find myself repeating stories and conversations for her benefit.  I work so hard to keep her attention so she will not tune out of the conversation.  She has always wanted to be in close communication, growing together.  Why does she no longer seem to care?  I miss her presence and she is still right beside me, speaking.

Forty-nine years old.  Alzheimer’s disease.  Only 15% of Alz’s patients are diagnosed as young as Mom.  We have no family history.  It is a unique situation; she is still relatively young with children who are just on the brink of adulthood.  We need you, Mom; please don’t leave us.  What would we do; how would we survive the loss of your presence? 

Christmas has come so quickly this year, and I’ve tried so hard to make it all slow down, to pause.  I have no sense of how long we will have with Mom and I wish time could cease and we all just remain as we are. 

For the first time in my entire life, this Christmas has no decorations, baked goods, or presents. All the thoughtfulness of gift giving is absent. My Mom is here with us in this house, and yet I've never felt more abandoned.

Rewind

Several friends and readers have noted that the posts regarding my mom have been touching, perhaps even helpful as you face your own journey. I think grieving is something we all do in this fallen world - it may take different shapes and forms, but it's part of our reality. It's our commonality. We share it. We can bear some its burden for each other. This is good to do.

Long before my scattered and disjointed blogging days, I kept journals. Through the years, I've parted with some of them, but one journal in particular I have always kept - that being my Mom Journal. I'd like to post those early entries, the days when we first noticed something was different about Mom. It is my prayer that you, reader, will find them helpful - like letters from a friend as you walk your own journey. Perhaps you'll weep as I wept (and do now at times) - that's good - that's biblical. You may laugh at some of the silly things that Mom did. That's good, too. Most of all, I hope at the end of the journey, you walk away knowing, as I am learning, that God is always good, His faithfulness really does endure through all generations, even in the midst of very dark seasons. May I praise Him evermore.

Thank you for reading. 

Unexpected

We traveled to Maine last week with our two precious girls in the backseat. The older of the two pleasantly occupied with a Wal-Mart 88-cent activity book for ten hours, the other needing more coddling and support. There I was, the Mom, doing things I remember my Mom doing on that long journey to Bethel.

The hours passed as we embraced the Vermont and New Hampshire hillsides, their long bending roads, tasting a bit of each town, driving through sun, clouds, sprinkles, and pure ecstasy, as if a canvas spilled out before us in all its array, each color marking its place. The clean air circled and danced through our car as we breathed through teethy smiles, our wide eyes soaking it all in. Bliss.

My heart was so delighted when we arrived. I actually felt it jump, so happy. To see my husband holding our sweet baby, and our older one standing so ready for adventure. We made it and were so ready to begin our week. This was our journey, our little get-a-way. I thought of so many things prior to our going: a grocery list, places to see, snacks, projects for A. The one thing I didn’t think I’d see, though, the last thing I thought of in preparing, was how often I’d be reminded of her. Of Mom.

Yet there she was in all that I did. In the gentle pace and crunch of our feet on the sand. In the dark paths lit only by stars at night. In the great big field where I held her hand and dreamed with her. In the flowered bed sheet that she shared with my dad for so many years. And there he lay without her. A luggage bag on the other side of the bed. Where she should be.

I saw her in the old country store with the woman who continues to make the same molasses cookies. There she stood with her familiar sweet face and her pure white hair, so old and rightfully so. She asked my mother’s name and if she’d remember her, if we were from around there. In moments like that I almost don’t know what to say. She’s so far away. How do you speak of someone who’s no longer in your world? How do I explain our story (without crying) to this precious lady wearing a lovely vintage apron in an almost-perfect store decorated with wooden toys and canned beets? I don’t. I keep it simple. I talk about molasses cookies and how we’ve always loved them.

I often wonder what it would be like to sit on the picnic table bench with her now, to touch the vinyl tablecloth and see her fingers hold her coffee mug. To see the steam rise in the cool Maine air. To observe her watching our girls and making them laugh. To go to the diner we used to visit and hear the waitress call us “sweeties”. God, how I miss her. What a gap remains in her absence.

As I sat in our cabin each morning, the first to wake, nursing my sweet baby girl, I’d glance at my dad sleeping. I’d envision her next to him, her graying hair in its beautiful waves. I’d see her smooth, soft skin. See her hand on my dad. Her loving touch that graced us all. I didn’t expect to see her so much on this trip, and as much as I weep, it was good and cleansing.

I often wonder what she’d think of me now and who I’m becoming. What we’d talk about. This is just one of those days when I wish she could be on the other line.

Must Read

This article is simply fantastic: http://solofemininity.blogs.com/posts/2011/05/alzheimers-and-gospel-transformation.html.

Messy Grief

Yesterday morning at the traffic light, I turned to the car beside me. A woman was wearing a watch that looked identical to one my Mom used to wear. I then observed how her jacket was the same style and color as what Mom used to wear. The glasses were also similar, as was her hair and her face... she looked just like her. I had to pull myself out of staring. My heart raced. I turned my eyes away. The light turned green. It took all my might to press the gas pedal and leave her behind. All I could do was cry.

I asked the Lord why I took notice of this woman. Perhaps to replace the images I carry in my mind of Mom’s final days. Or maybe to remember how she would have been now, had she not been ravaged by Alzheimer’s Disease. Perhaps just to be reminded that she is healed now – far better than she could’ve ever been here on earth. Or maybe just to expose my feeble heart that sometimes just needs to cry again. To continue to grieve even when it feels like I’ve done so much grieving.

The other week a friend and I took the kids to a playground. It was a fun place – lots to see and do, lots to chat about. She just asked how I was doing. I started talking and within three minutes I was bawling. When I give words to my feelings and memories, I can’t help but cry.

I don’t want to think about certain elements of this whole situation. I thought for sure I’d want to go visit my Mom’s roommate again, but I don’t. I don’t want to go back down those halls; I don’t want to be in the room where I saw her dying body for the last time. I don’t want to smell the food cooking because it will remind me of all the times we sat next to each other. And it will remind me of when she could still walk and talk and it’s just all too painful.

Each week when I drive to visit my Dad at his house, I feel like I’m driving to go see her and I wish I could but I can’t. She’s not there.

I was trying to envision the other day what life would be like if Mom was here and healthy. Would she be working? How often would she come to visit us? Would we go shopping together? Would she love to do certain activities with A? The truth is – I feel her absence so profoundly.

I don’t like to idolize my Mom. She was not perfect. She made mistakes. We didn’t always get along. But, I loved her dearly and I miss her. I never knew quite what it would feel like to NEVER see her earthly frame again. I miss her presence. I miss walking into a room and looking for her face. I miss touching her skin. And knowing that she could still hear me. Just being near her.

Now that she’s gone, I remember more of who she once was. I’m able to see past what the disease made her. As we go through the things left behind in my parents’ house, my memories are restored. But, it’s as if this immeasurable gap remains between the Mom I grew up with and the person who left us. It’s been so long. I don’t know how to bridge the two worlds together. I feel the gap all the more since she’s gone.

When I was a child, I always wanted to be with my Mom. I missed her everywhere I went. I found a journal the other day from when I worked at a summer camp. I wrote of how much I missed home. I was weepy every Sunday evening I went back to college. I feel as if I’m experiencing the greatest separation that could ever exist and everything within me hates it. I hate it. I want nothing to do with this. I want to put up a fight. But nothing I do, nothing I feel can restore what’s been broken. And nothing can bring her back.

I’m left with painful images of dying, death. I’m left with that last day when I wanted to go back and see her and didn’t. I’m left with the night I knew death was near and I climbed into my bed. I’m left with our phone being downstairs the morning she died, never hearing it ring. Packing a picnic lunch to go see her to realize my Dad had called to tell me she had died. I’m left with every detail of pain, every feeling of loss. Every last look into her eyes. Every last feel of her feeble hands.

There is nothing right about death. I can’t say this enough.

Yet in this great loss and separation, Christ comes to lift me from such darkness. “But you, O Lord, are a shield about me, my glory, and the lifter of my head.” (Psalm 3:3) And, He reminds me that I was once separated from Him, but no longer am.

Christ came to bring me near, to restore what had been broken, to usher me into fellowship with Himself. Un-ending fellowship and relationship. And, He assures and promises me (and He always keeps His promises) that He will never leave or abandon me (Hebrews 13:6). He will never be overcome by something bigger than Himself. He will always be the sovereign, powerful conqueror. I don’t have to fear Him going away.

Luke 15:31 Jesus says, “’Son, you are always with me, and all that is mine is yours.’” It’s Sonship. It’s family. It’s a tie that is not broken. I’m His child. And, as His child, I want to be meek and humble like Christ is (Matthew 11:29), who submitted Himself to the will of God, knowing it would entail great suffering. I want to be fully surrendered to the work He wants to do in my life. And, right now, presently, this is the work He’s about. And, I can trust His hand and His presence will be with me the entire way through this journey.

Sinclair B Ferguson says meekness is “… the humble strength that belongs to the man who has learned to submit to difficulties, knowing that in everything God is working for good.” He then goes on to say,

“We have seen that mercy is God stooping down to man in his weakness and inability, to bring him healing and restoration. He is the Good Samaritan, binding wounds, carrying burdens, and providing for the man who was attacked by robbers (Luke 10:33-35). This is what God does for us in Christ Jesus.”

This morning it hurt to wake. I cried out for Him to carry this burden. And He did. He is continually lifting my head and my heart! And He will never stop doing this. He is redeeming and restoring everything the robbers’ stole. And it’s all been accomplished through His everlasting work on the cross. His saving work is finished, but His ministry to my heart continues. And I will always be thankful for this!

I am not alone.

“Though the fig tree should not blossom,
nor fruit be on the vines,
the produce of the olive fail
and the fields yield no food,
the flock be cut off from the fold
and there be no herd in the stalls,
yet I will rejoice in the Lord;
I will take joy in the God of my salvation.
(Habakkuk 3:16-18)

Do you believe this?

When a person passes away, there are all sorts of things left over – it’s hard to know where to put them or what to do with them. Like the place she lived. There it stands with all the people inside, all the caregivers and patients, all the food being prepared and served each day. The same beds, activity rooms, wheelchairs. Someone else is now using Mom’s bed and wheelchair.

And then there's her birthday. It was Monday. What do you do when you have a date on the calendar, but the person no longer uses it? There it stands - empty. You know it should have plans all over it – the planning, making of the cake, gathering together, going home tired. But this April 11th was quiet. Reflective. Still.

Amidst all the things that feel so misplaced, immeasurable treasures have been gained. In the darkness of impending death and just after, I couldn’t think about the next day. I couldn’t picture what waking up would look like or what our new normal would be. Everything just hurt.

Paul Tripp says, “Death is the enemy of everything good and beautiful about life as God planned it. Death should make you morally sad and righteously angry. It is a cruel indicator that the world is broken; it is not functioning according to God’s original design… God encourages you to mourn… You will hunger for the completion of all things. You will long to live with the Lord in a place where the last enemy—death—has been defeated.”

Last week, a friend approached me in the church parking lot. She hugged me. She said how sorry she was. And she told me that when her father died, she left the hospital upset, confused, and angry. She said, “I couldn’t understand how people were smiling. I wanted to shout, ‘Aren't you aware of all the pain that exists in this world?’” She went on to affirm how there is nothing right about death. My heart danced for it was understood. I needed to hear how wrong death was. I needed to talk about that. She was a huge blessing to me that morning.

I felt the same way about buying a dress for my Mom’s Memorial Service. I was weighed down by a sense of “a daughter should never have to pick out a dress to wear at her mother’s funeral. Everything about this is wrong.” The cashier splashed a generous smile across his face as he handed me my change and said, “Penny for your thoughts?” I mustered up a mild grin and thought to myself, “Oh, sir, you do not want to hear my thoughts!” I was hurt. Upset. Angry. Feeling such immense loss. I wept the entire way home, with my black dress neatly folded in a little white bag on the passenger seat.

In the days approaching Mom’s death and just after, I clung tightly to Psalm 23. With all my might, I held the promise in verse 4: “Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and staff, they comfort me.” I knew that despite the darkness I saw and felt, I was not alone. God had not left me, and He was never going to leave me. And, His care and protection over me would remain my comfort. All I can do is praise the Lord for this promise. He has been so faithful. As He welcomes my tears and collects them all, He comforts me like no other. I do not grieve without hope.

I am sad over the loss of my mother. I am sad that I will never hear her voice (that I actually haven’t heard in years) again. I grieve that I’ll never hold her hands or see those beautiful eyes. I weep at the reality that death will continue to destroy more lives. That I will attend more funerals. But, praise the Lord – all that is within me, praise the Lord that Mom is HOME!

When I was an early teenager, my friends and I prided ourselves in memorizing a verse from the Bible. It was, of course, the shortest verse: John 11:35, “Jesus wept”. Regardless of my motives for memorizing, His Word does not return void and now I delight in this precious story of Lazarus’ death. Jesus joined His friends in their heartfelt sorrow and loss. This shows that there is a reality about the sorrow of death that even Jesus participated in. We do grieve. Jesus did. We do cry. He did as well. And just as He looked forward to the resurrection, so do we.

Paul Tripp says, “As you weep, know this: the One who weeps with you is not content for things to stay as they are. His death was a cry and His resurrection a promise. The living Christ will continue to exert His power and you will grieve no more.”

There is victory. The grave has been conquered. “The last enemy to be destroyed is death” (1 Corinthians 15:26). This has been secured and one day we will see the fullness of this reality.


I have to admit that I was quite anxious about the Memorial Service. The day before, I experienced a great deal of anxiety. I called upon two friends to pray for me. They did and by evening, every weight and concern was lifted.

I have envisioned my Mom’s service since the day of her diagnosis. I know that might sound unusual, but it’s true. A diagnosis of terminal illness just makes you think that way – diagnosis ultimately leads to death. There was no other road to take. It was a long 12 years leading to one destination.

And, for those of you who joined us at the service, you know what a beautiful day it was! In all my visions and expectations, I could have never imagined it to be as wonderful as it was. Above seeing so many people who have walked through this journey with us, and superior to the lovely music and beautiful building, there were three things that impacted me dramatically:

1. Three of Mom’s nurses' assistants came to greet the family. My dad hugged each of them and said through tears, “Thank you! You were the best nurses! You cared for Sharon so well! We will always remember you and be thankful!” Tears freely flowed from our eyes.
2. An outstanding message sincerely delivered from our dear friend and Pastor, Peter Bogert.
3. The restoration of memories as my Dad and Mom’s best friend shared personal reflections. In 12 years of losing Mom, a part of us forgot who she was before Alzheimer’s. God is restoring these memories and it is SO good!!

And, now for the really amazing encouragement! Our Pastor began the message by describing what people often say at a funeral to the family who has lost a loved one. “We’re sorry for your loss. We’re praying for you, etc.” And then he said, “What would Jesus say to a family at a funeral?” He took us to the story of Lazarus.

Jesus told Martha, in the midst of her sorrow and pain, “I am the resurrection and the life. Whoever believes in me, though he die, yet shall he live, and everyone who lives and believes in me shall never die. Do you believe this?” She said, “Yes, Lord; I believe that you are the Christ, the Son of God, who is coming into the world.” (John 11:26-27)

No one said these words to us in the receiving line. Either Christ was insane or He was God. Only He was able to declare that he was the only way to salvation and secure it.

As Peter preached these verses, S and I turned toward each other with wide eyes and tears streaming down our faces. Because the evening of Mom’s death, as I stood over the frame that no longer contained her spirit, all I heard resounding in my spirit was this: “Do you believe this? Do you believe that Jesus has and will secure all that He has promised? Do you believe this reality?” It was one of the most challenging moments of my life. And, I praise the Lord that as Martha did; I was able to shout from my heart, “Yes, Lord; I believe!” Even this is a gift from the Lord!

So, Mom is gone. And often times throughout the day I hear myself say, “Jesus, I’m so glad she’s with you now. I’m so glad you have her. Tell her how much we love her. I know you are caring for her so well!”

I do not grieve without hope. I keep moving forward, trusting His promises, and awaiting the many more memories of Mom He will restore to us. I know He is a redeeming God.

The End and Beginning

Psalm 56: 8-- “You keep track of all my sorrows. You have collected all my tears in your bottle.
You have recorded each one in your book.”

On Wednesday evening, my sister phoned to tell me that Mom was showing more signs that the end was near. And, as we wept together, dreading the final moments, knowing that Mom’s body was uncomfortable, I longed for her Homegoing all the more, for the suffering to cease.

12:55 a.m.
I woke uncomfortably. Just couldn’t find the right position. Wondering why I was up at that hour. And then I knew that I needed to pray for Mom.

God woke my brother up at the very same time. As he walked outside, he asked God to take Mom quickly.

4:41 a.m.
Mom took her final breath as Dad walked through the doors of the nursing home.

7:46 a.m.
As I gathered A and I to head out to see Mom, I listened to a voicemail my Dad left for me at 5:25 a.m. My knees dropped to the living room floor. Sobs spilled out everywhere. My cry extended endlessly like a note carrying over eternal measures.

Dad was unable to talk at the time so I phoned my sister. She confirmed what I knew to be true. I thought I’d be ready to hear it. I had envisioned this moment for years. One can simply never be ready.

Soon we were all at Dad’s house.

The day was a whirlwind of weeping, hugging, remembering, laughing, and resting. Phone calls. More weeping. Almost-sleeping. Keeping on. Smiling. Crying.

Dad was the only one who saw Mom shortly after she passed. We all knew in advance that her body would promptly be transported to the University of Penn for an autopsy. In light of the circumstances and with sincere compassion, the funeral director kindly offered us the gift of a private viewing of Mom that evening.

I wept as we drove to the funeral home, as we walked through the doors, and as we waited to be greeted. I trembled. A woman ushered us into another room, telling us to take as long as we needed, to pull up chairs if we’d like. I looked past her, avoiding eye contact, just wanting to see my Mom. Then, I saw her. Her profile. Her frame. And, I heard my thunderous weeping in the still, quiet room. There she laid, but yet not her.

What I noticed first was her stillness. The final days of her life were so unsettled. Her body’s response to the lack of food often woke her from sleep. But, that night, as her precious, thin frame laid there in that room, it was still, not bound by a broken sinful body anymore. We could not help but reflect on the fact that she looked peaceful, absent and free. My Dad cried out, “She’s not in here any more… she’s FREE! She’s free!” It was undeniable.

We must have spent an hour there, just staring at her and talking. Commenting on her lovely skin, noticing the effects of a long physical battle, reflecting on the smile we had not seen in so long. Her expression reminded us all of days long past. And, something about her laying there made me think of all the times I’d walk into their room in the early morning, to greet her sweet, sleeping face in bed. That’s how she looked to me. It was an hour filled with tears, joy, weeping, sorrow, and thankfulness. We took the opportunity to remember and also reflect on all God did through her in the midst of an awful disease. And of His goodness. And of Mom’s wonderful spirit through it all. Such a gift from the Lord. I’ve never seen the Fruit of the Spirit more present in anyone than in my Mom through Alzheimer’s.

As we stood there, Dad told us about a conversation that I remember well. When we told Mom she had Alzheimer’s for the very first time, she asked Dad, “Will I be okay?” He simply said, “Yes, you will be fine. I will take care of you.” And she was fine with that answer and never asked him again. He kept His promise and she made it a blessing for him to do so. It was the most beautiful picture of trust. We have been blessed as children to watch their story unfold and even to see it come to completion.

It came time to leave the funeral home. I wrestled with it. How could I possibly say goodbye to this face? How could I leave her body lying there? It was anguish. Utter defeat. Misery. To turn my head, yet turn back again, knowing I’d never see her again in this world. Could I stay the night? Was I crazy?

I knew that she was gone, but I just wanted to hang onto that image, to never forget. To hold her one last time. But I knew it was all different now.

There were so many times these past few weeks that I just sat by Mom’s side, staring at her, taking it all in, wanting to comfort her every feeling, her every sense and pain. I wanted to memorize her face, her eyes looking at me. To remember those hands in mine.

I never knew death could be such anguish. I had never imagined how deep the pain would throb and twist. It’s a part of this world that God never intended us to experience. It is crushing. The weight of it all. How I’ve never really grasped what Christ did on the cross for us – taking on all sin and death – taking our place, feeling separation from the Father.

Romans 8:38 assures me that when we are united with Christ in His death and resurrection, we don’t have to experience this separation for eternity. (For those apart from Christ, eternal separation from God does exist – Luke 16:19, Matthew 5, 25, 18, Isaiah 30.) As believers, when our bodies are resurrected, death is ultimately defeated!

1 Corinthians 15:54-57

“Then, when our dying bodies have been transformed into bodies that will never die, this Scripture will be fulfilled:
Death is swallowed up in victory.
O death, where is your victory?
O death, where is your sting?

For sin is the sting that results in death, and the law gives sin its power. But thank God! He gives us victory over sin and death through our Lord Jesus Christ.”

I must confess, there were times when I felt such confusion. When standing over the lifeless body of my mother, I faced the reality: Do I believe all that I say I do? Do I trust the resurrection of Jesus? And, I wrestled again with the injustice. I almost felt as if the disease had won. After all, she was gone. She died from Alzheimer’s. It took her. Or, did it?

In Matthew 27:46, as Christ hung on the cross in great distress, he quoted Psalm 22:1: “My God, My God, why have You forsaken Me?” He experienced separation from the Father in bearing our sins. But, as the rest of the Psalm indicates and as was His promised resolution, the victory was about to be secured. Deliverance was coming! Only God could take suffering and death and bring victory and redemption! Only Christ in His perfection could stand in our place.

Romans 6:23 says, “For the wages of sin is death, but the free gift of God is eternal life through Jesus Christ our Lord.” We deserve death. He offers life.

Romans 5:10 shares that Christ’s death and resurrection is necessary for our salvation. We’re reconciled through His death and life.

Christ knew that the Father would be faithful. And, I know that I can never be separated from His love (Romans 8:38). And, I aspire to be like Abraham, who didn’t waiver in trusting the Lord, who was fully convinced that He would do as He promised.

Christ secures eternal life for all those who trust in Him. I put my whole heart, my entire life, my trembling body in the face of death, my entire trust in Him. And, I am completely confident that there will be no separation. And, there never was for my Mom.

Sweet victory. She is FREE! Praise the Lord – she is FREE!

Jesus lives and so shall I. One day I will also rise and meet Him! What a day that will be!

Today, as spring ushers in and I see new life blooming, I praise the Lord that through death, my Mom now sees LIFE.

More to this story

Walking down the hallway of my Mom’s home is something I love and hate to do. I love it because my Mom is at the end of it. I hate it for all it represents. My sister and I like to call it “the hallway of tears”, for each step we take brings us closer to my Mom’s reality. It brings us closer to these last days, to our last goodnight.

When my Mom was first diagnosed with Alzheimer’s, I remember looking around the doctor’s office, surveying all his credentials. I was so angry with him – not him as an individual—but that his profession should even exist in the first place. That people should even get Alzheimer’s. Even from the beginning of Mom’s disease, there was this “wrongness” about the whole thing.

When I see women nearing their later years, displaying their beautiful crown of white hair, I am reminded that my Mom will never get there. When I admire the sharp minds of older generations, I’m reminded that my Mom’s mind has disappeared and vanished. When I see my Mom lying there, when I touch her frail hands, when I see the slight light left in her eyes, all of my heart shouts, “This is not the way it’s supposed to be!”

A couple nights ago, as I walked down the hallway, I couldn’t help but think that my Mom should never have had to go to bed each night in this place. She should be at home, where she belongs. And, as I entered her room and saw the picture of her mother who also died of Alzheimer’s Disease this past year, I became angry at the disease. I wanted to scream at the injustice.

This sense of injustice reminded me that we are created for so much more than this world.

I’m thankful that in Scripture, death is the last enemy. And, it is only temporary. All that is bad will one day be made right.

There’s a day to come when death will be no more -- when all our pain and suffering will cease. There will be a new reality; a perfect relationship between God and His creation will exist.

Right now, we see the pain. We see Mom’s physical frame decline. We lose more of her each day. But, there is more to her story than this ending.

In the new creation, all things will be made right. The entire progression of the Bible builds to this reality. God is going to redeem and restore everything to what it was meant to be. Right now, we feel the weight and pain and heaviness of this world, but it’s going to change.

There will be a day when we won’t struggle with losing loved ones. When there aren’t people diagnosing Alzheimer’s. When all will be made right.

As a Christian, I believe this reality. My hope is beyond what we see now.

Jesus took on flesh, suffered terribly, and was cut off from God so we might not have to experience that eternally. My great Savior, I thank you for such hope! Such redemption. That I can trust You took my place, the place I deserved on the cross for my sin, and you have secured my salvation. That this is my standing, my hope, my identity, and my security. This what carries me through these final days.

A good friend of our's has a great sermon on this new reality. Feel free to check it out.

Psalm 103:

Let all that I am praise the Lord;
may I never forget the good things he does for me.
3 He forgives all my sins
and heals all my diseases.
4 He redeems me from death
and crowns me with love and tender mercies.
5 He fills my life with good things.
My youth is renewed like the eagle’s!
6 The Lord gives righteousness
and justice to all who are treated unfairly.
7 He revealed his character to Moses
and his deeds to the people of Israel.
8 The Lord is compassionate and merciful,
slow to get angry and filled with unfailing love.
9 He will not constantly accuse us,
nor remain angry forever.
10 He does not punish us for all our sins;
he does not deal harshly with us, as we deserve.
11 For his unfailing love toward those who fear him
is as great as the height of the heavens above the earth.
12 He has removed our sins as far from us
as the east is from the west.
13 The Lord is like a father to his children,
tender and compassionate to those who fear him.
14 For he knows how weak we are;
he remembers we are only dust.
15 Our days on earth are like grass;
like wildflowers, we bloom and die.
16 The wind blows, and we are gone—
as though we had never been here.
17 But the love of the Lord remains forever
with those who fear him.
His salvation extends to the children’s children
18 of those who are faithful to his covenant,
of those who obey his commandments!
19 The Lord has made the heavens his throne;
from there he rules over everything.
20 Praise the Lord, you angels,
you mighty ones who carry out his plans,
listening for each of his commands.
21 Yes, praise the Lord, you armies of angels
who serve him and do his will!
22 Praise the Lord, everything he has created,
everything in all his kingdom.

Let all that I am praise the Lord.