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.