Tag Archives: dementia

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Sorrow Sent by God…

 

Whew. Sometimes the weight of sorrow surprises me.

 

I came online today, logged in to the blog, and tried to translate some recent thoughts to coherent words.

 

I made a very quick trip home about a month ago. I wanted to see Mom, and the rest of the family. There is a lingering homesickness that strikes sometimes, even when you moved away from home 24 years ago. Even when you have lived away from home longer than you actually lived at home.

 

That homesickness is amplified when you grew up in a place as unique as New Mexico, where the skies have a special shade of blue and nothing else will take care of the craving for red and green chile.

 

And it is amplified even more when one key, elemental, powerful force of your life is slowly inching her way toward eternity.

 

We all are, I know, but Mom is in her own way. She is holding her place physically here in our presence, while most of her is somewhere else. Her thoughts, her words, her connection…it has become hidden. Her laughter.

 

Her smile remains, and the twinkle in her eye.

 

I sat down and tried to put words to this nagging feeling, this sorrow, that has been present for years. I have several friends who continue down this road and I wanted to share something that would encourage…or at least remind that we are not alone.

 

 

And then this came up in memories on FaceBook…a picture from ten years ago.

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And the sorrow settled upon me.

 

An acute sorrow with this picture of a more clear minded person. A person who was able to interact and who still knew in some way.

 

There is a sense where mourning is set aside with a long disease like this. I don’t know what it would be like  if it was a long disease where her mind was present, but I know on this journey we simply cannot be sad all the time…it is exhausting.

 

I think of Mom as this place holder…this bookmark in life. Or maybe a pause button is more appropriate. She is present and not…and we continue with life, and yet we don’t. My brothers and my dad are more impacted by this, obviously than I am, as the rhythm of their days is dictated by her meals and her life.  But she causes this pause in life, she reminds us that she is still here, and yet she also reminds us of all we have lost.

 

She reminds us that we are broken. That sorrow is lingering around the edges of our joy. Sorrow because things are not as we know they should be. Sorrow because we long for something else.

 

G.K. Chesterton has a poem where he suggests that sorrow is used by God to bring us back to attention to the divine, to the eternal…

 

Sorrow

At last, at even, to my hearth I hark,
Still faithful to my sorrow. And inside
Even I and all my old magnanimous pride
Are broken down before her in the dark.

Sorrow’s bare arm about my neck doth strain,
Sorrow doth lift me to her living mouth
And whispers, fierce and loving like the South,
Saying, “Dear Pilgrim, have you come again?

“Whether you walked by wastes of upland green,
Whether you walked by wastes of ocean blue,
Have you not felt me step by step with you,
A thing that was both certain and unseen?

“Or haply is it ended? haply you,
Conquering and wholly cured of loving me,
Are but a wavering lover who would be
Off with the old love ere he take the new?”

But, seeing my head did but in silence sink
Before her ruthless irony and strong.
She gave me then that dreadful kiss to drink
That is the bitter spring of art and song.

Then with strange gentleness she said, “I choose
To be thine only, thine in all ways; yes,
Thy daughter and thy sister and thy muse,
Thy wife and thine immortal ancestress.

“Feed not thy hate against my rule and rod,
For I am very clean, my son, and sane,
Because I bring all brave hearts back to God,
In my embraces being born again.”

Thus spoke she low and rocked me like a child,
And as I stared at her, as stunned awhile,
On her stern face there fell more slow and mild
The splendour of a supernatural smile.

 

 

 

Sorrow is appropriate. The words are gone and the understanding is gone, but her presence remains. In the same moment it reminds us that this world is broken and it is painful, and because we know in our being that it should be otherwise, sorrow sparks hope that things will ultimately be put right.

 

The rest of my day was shadowed, though, as that picture intensified the sorrow. And maybe that is what I was to write about after all: it is okay to be strikingly sad that those we love dearly no longer know us, and no longer can speak to us. It is okay to take time in the long journey of a set-aside mourning to mourn with tears and acute sorrow when God allows sorrow’s stern face to bring us back to know our need for Him.

 

I think we all carry a sorrow with us that is part of this broken world, and sometimes God uses this acute sorrow to allow a true mourning that cleanses us. A good cry can be tremendously healing, so we can sit back up and be present in the midst of this broken world and bring hope.

 

So for today, if you took a picture of us together, I may not mirror her quite as I did in the picture above. Her expression has relaxed as her knowledge of me has slipped. If you ask how she is I won’t know quite how to answer…I wonder what whispers God is telling her that we cannot know.

 

 

And for those who are on this same journey…take heart. You are truly not alone, and God is moving even through this. Lean in to the sorrow and hear God’s heart. Do not try to ignore it or overcome. Allow the moments of deep mourning, and be reminded of the hope that all will be made well.

 

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I do not understand…but I hope.

Indeed the Book of Job avowedly only answers mystery with mystery. Job is comforted with riddles; but he is comforted. Herein is indeed a type, in the sense of a prophecy, of things speaking with authority. For when he who doubts can only say, ‘I do not understand,’ it is true that he who knows can only reply or repeat ‘You do not understand.’ And under that rebuke there is always a sudden hope in the heart; and the sense of something that would be worth understanding.  — G.K. Chesterton

 

There has been so much dialog lately about strong women. Worthwhile dialog. Conversation happening between women I consider strong, and women I respect. Underlying all of it I cannot help but think of the woman who instantly comes to mind when I think of a strong woman.

 

Grant me a little grace on this post. I am not in the mood to define for you what strength in a woman should be, or how we should exercise our rights. In this moment, late at night on January 25, I am not interested in marches or or name calling. I am not interested in the vulgarity of a president, or the necessity of standing in solidarity.

 

Right now, I am thinking of a woman standing in her bathrobe just inside the the door of a bus. Remember the old buses with the door that had the handle the driver had to pull to close the door? She was standing just inside and the driver was pulling that handle for all she was worth, trying her best to slam that door on this woman. Didn’t work. Bathrobe. Coffee in hand, and rant about to begin.

 

I don’t remember what this substitute bus driver had done that so ticked off my mom, but it was a doozy. I remember coming home and telling her after the first day about our ride. I remember being upset, and I remember coming out that morning and watching my mother explain things in no uncertain terms. The bus rides were much better the rest of that week.

 

That was my mother. Strong woman.

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I remember so many situations when she walked in a room and filled it with her presence. She was elegant, intelligent and incredibly witty. She had a flair and charisma that drew people to her and a generosity of spirit and kindness which made her friendships last for years.

 

She had a wit and a humor that could absolutely leave you rolling on the floor laughing, or stop you in your tracks if you were out of line.

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Today was her 81st birthday.

 

So, why the Chesterton quotation? Because, I do not understand.

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It is not that I think we deserve any great grace or dispensation from a disease, or that because she was strong she should have been spared. It is simply that today is her birthday and it continues to break my heart that she is lost to us in her mind.

 

That the strong woman walks with a shuffle and hums her songs now without a tune, with lyrics made of words strung nonsensically together. She has not known us for some time. We have been on this journey of Dementia for nearly ten years. My brothers and my Dad walk it with an intimacy and strength I admire beyond words, while I watch more from a distance.

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I do not understand why we have to lose her to this dark place in her mind. I do not understand why she does not know her granddaughter carries not only her name, but the set of her jaw when she is determined, and the quickness of her mind and her wit.

 

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I do not understand, and God does not explain. He responds, “You are right, you do not understand.”

 

This is broken, and while it is broken there is still purpose. There is still wonder in the midst of the brokenness, and even here in the midst of this heartbreak, He is present and continues to work.

 

I don’t like it. I wish she could come to the phone and hear us wish her a happy birthday. I wish she could know. But still, I know that there is hope. I lean in on days like today and long for heaven. I long for the healing of the One who can make all things whole. The One who can make all things right, and Who can bring rest in the midst of all this chaos.

 

I remember late on Monday night I think it was, maybe Tuesday nights, listening to the tapping of the typewriter. Mom was the teacher for BibleStudy Fellowship in our city, and she would be typing her lecture.
Tap. Tap. Tap. Tap….and then that Whhhiiiirrr, SNAP! as she hit return.

 

Late at night, thoughts flowing. I inherited that from her, along with her strength and few other things. The setting of my jaw, for instance, when I’m really ticked off.

 

It’s almost midnight, but I will get this post in before your birthday is done. We need to hear about hope in these days. We need to be reminded…that even though we don’t understand, there is reason to trust and to hope. Not in man, but in God who has time and again proved Himself faithful. It is not easy, and some days we do it through tears, but we hope.

 

Happy 81st, Mom. I trust somehow you knew all the flowers that filled the house were for you.

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“”Let the sea roar, and all that fills it, let the field exult, and everything in it! Then shall the trees of the wood sing for joy,”” says David (1 Chron.16:32-33). And shall is the verb of hope. Then death shall be no more, neither shall there be mourning or crying. Then shall my eyes behold him and not as a stranger. Then his Kingdom shall come at last and his will shall be done in us and through us and for us. Then the trees of the wood shall sing for joy as already they sing a little even now sometimes when the wind is in them and as underneath their singing our own hearts too already sing a little sometimes at this holy hope we have.

The past and the future. Memory and expectation. Remember and hope. Remember and wait. Wait for him whose face we all of us know because somewhere in the past we have faintly seen it, whose life we all of us thirst for because somewhere in the past we have seen it lived, have maybe even had moments of living it ourselves. Remember him who himself remembers us as he promised to remember the thief who died beside him. To have faith is to remember and wait, and to wait in hope is to have what we hope for already begin to come true in us through our hoping. Praise him.” -Buechner

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Listen: This Is Not Just Sweet Baby Jesus in a Manger

Nate read a story the other day about a little girl turning eleven who realizes she is not simply eleven, but all the ages she has been.

I have this feeling, especially at Christmas. I am this nearly 47 year old mother of four, wife, and daughter. I am immersed in the memories we are creating in our home. I am present as we bake cookies and hide elves. I am fully immersed in watching Maddie absolutely squeal in delight at a surprise letter from Santa the elves brought her. The excitement of Nate in helping to decorate and transform our house is contagious.

The sights and sounds of the season draw me in every year.

And yet…as I sit in the coffee shop for a few minutes, memories strike me and suddenly I am a child again. Listening to Christmas playlists, I am taken back to the house of my childhood. The sights and sounds of New Mexico fill me with a mixture of delight, sentimentality and sadness. A yearning for what is just not quite right now.

My Mom amazed me in her ability to create an atmosphere. She loved to say that the house came alive every Christmas; it puffed itself up and delighted in all the trimmings. She created a wonder-filled home. The culmination came on Christmas Eve as we gathered around an enormous table filled with a meal we only ate once a year. Tiny cinnamon rolls, potatoes au gratin, asparagus, and a beef tenderloin which melted in your mouth.  Shrimp cocktails and cheese sticks and egg nog and other treats started the evening.


We talked.

My grandparents would arrive and we would sit around munching on cheese sticks and talk. I wish I could remember more clearly the conversations. I simply remember the atmosphere. Everyone dressed up in Christmas sweaters and my velvet dress. Shoes shined. Eventually we would move from couches to the table and have a long dinner. There was no rush, and even as a child I don’t remember wanting to rush away from the table. There was something magical about the table and the conversation.

Eventually we would move back to the couches and sometimes act out the story of Joseph and Mary and baby Jesus. In our bathrobes with towels on our heads, held tight with belts. Some years Dad would simply read the story.

We were waiting for the culmination of the evening. We would wander outside and watch the cars slowly creeping by, only parking lights lit, seeking out the luminaries through the neighborhood. Before the dinner and the cheese sticks, before the dinner preparations shifted into high gear, we would have lit hundreds of luminaries. On the roof of the house, lining both sides of the sidewalk. Our neighbors had done the same. There were no electric lanterns…we lit every tea light in those paper sacks.


Christmas was filled with the feel of crisp, cold air and the smells of candles and meat roasting, of cinnamon and nutmeg topping egg nog.

Still…the culmination was loading up in the car late in the evening and heading to the midnight mass at St John’s Episcopal church. Walking in with only whispers, trying so hard to stay awake. The room filling with more and more people dressed in velvets and reds and greens, and then suddenly the music beginning and the room filling even more with sounds and voices. Filling with the word proclaimed.

“Unto us is born…”

“Hark! The Herald Angels Sing!”

“God has come. He is among us!”

I don’t remember if I ever fell asleep on the drive home. I remember getting to open one present on Christmas Eve. I remember strict instructions not to come down by myself, but wait until Dad came and brought me to he and Mom’s room to wait for my brothers so we could all come down together. I remember the anticipation. We didn’t have Santa Trackers, although I do think there was some type of tracker on television.

Laying in my bed. Trying so hard to fall asleep, and finding it so difficult. After midnight service, it had to be well after 1am.  Then….waiting….hearing footsteps on the roof and maybe bells? This didn’t happen every year, I don’t believe, but I know it happened at least once because it is firmly in my imagination of those days.

All of these memories, filling my mind as I sit here in a coffee shop, taking me through the events of the evening and on into Christmas morning with egg casserole for breakfast and presents opened, all of these memories bring me joy. Delight.
And yet, as I follow them, eventually they bring me to a deep sadness.

These memories are filled with a woman who absolutely filled a room with her presence. Dad somehow brought to life what she designed, and they were a great team. Dad was content, though, to stomp on the roof and jingle bells, to create the egg nog delights and enable the lighting of hundreds of luminarias. He was happy to quietly make it all happen….but

Mom orchestrated the whole event. And it was an event.

And now she has no idea. She has no delight in the music and the sounds and the sights. She no longer orchestrates. She trusts like a child in my Dad who helps her to know how to sit and stand and eat. She grasps tightly to his hand and she hums or whistles. She speaks, but the words have no cohesion or meaning.

She, who would greet the guests at the door with a smile and warmth which immediately set the tone, now is unaware when people come to visit. She no longer knows us. She cannot delight in the the grandchildren who carry so much of her character and strength and humor with them. And they cannot know the strength of this woman who directed and orchestrated so much of my history.

And so, in the midst of delight in the laughter of Maddie and the anticipation of all the kids for Christmas morning, in the midst of the sounds and sights and tastes of our Christmas, there is a deep sorrow and longing for something more whole. There is a longing for the true peace of Christmas, for a world ruled with truth and grace.

There is alongside the joy and hope, deep awareness of brokenness. And that brokenness and loss does not detract from the joy and hope: it amplifies them. That longing for all to be made whole is there because joy and hope have been tasted. I wouldn’t know to long for a woman filled with grace and elegance and wisdom if I only knew her in her Dementia and confusion.

We are marked by Eternity. The reality of Christmas moves us deeply because we have tasted of hope and joy. Some years Christmas  may be difficult because the sorrow is more present, and the longing fills us to the point we have to fight back tears sitting in the coffee shop…but that longing is holy. That longing is the mark that we are created for something more than just what is in front of us.

Christmas is the proclamation that there will be healing and restoration. So, if you sit next to a parent who no longer knows you. If you sit next to an empty seat of someone no longer with you. If you sit in a home where stress and sorrow demand your attention more than joy and hope. If you simply do not know what tomorrow holds, and the stress of a very confused and chaotic world has exhausted you…listen to that longing for something true. And hear:


And in the same region there were shepherds out in the field, keeping watch over their flock by night. And an angel of the Lord appeared to them, and the glory of the Lord shone around them, and they were filled with great fear. And the angel said to them, “Fear not, for behold, I bring you good news of great joy that will be for all the people. For unto you is born this day in the city of David a Savior, who is Christ the Lord. And this will be a sign for you: you will find a baby wrapped in swaddling cloths and lying in a manger.” And suddenly there was with the angel a multitude of the heavenly host praising God and saying,


“Glory to God in the highest,

and on earth peace among those with whom he is pleased!”  Luke 2



Listen: that is not some quaint story of the baby Jesus, cute and tame. That is the story of God wrenching open our reality and stepping. This is what we wait with held breath for, this is what we seek in this Advent season filled with chaos in our world and brokenness as far away as those we love. This is God stepping in to our brokenness and promising healing and hope.

Sing the songs this Christmas. Bake the cookies. Let your children delight in all the wonder of the season…and hold tight the truth that this is the story that changes everything. Do not miss the enormity of this truth: God became man. Take all your sorrow and longing, all your delight and joy and remember that you are remembered and loved by. God willing to become man to save you.

Buechner:

“Christmas itself is by grace. It could never have survived our own blindness and depredations otherwise. It could never have happened otherwise. Perhaps it is the very wildness and strangeness of the grace that has led us to try to tame it. We have tried to make it habitable. We have roofed it in and furnished it. We have reduced it to an occasion we feel at home with, at best a touching and beautiful occasion, at worst a trite and cloying one. But if the Christmas event in itself is indeed – as a matter of cold, hard fact – all it’s cracked up to be, then even at best our efforts are misleading.

The Word become flesh. Ultimate Mystery born with a skull you could crush one-handed. Incarnation. It is not tame. It is not touching. It is not beautiful. It is uninhabitable terror. It is unthinkable darkness riven with unbearable light. Agonized laboring led to it, vast upheavals of intergalactic space, time split apart, a wrenching and tearing of the very sinews of reality itself. You can only cover your eyes and shudder before it, before this: “God of God, Light of Light, very God of very God… who for us and for our salvation,” as the Nicene Creed puts it, “came down from heaven.”

Came down. Only then do we dare uncover our eyes and see what we can see. It is the Resurrection and the Life she holds in her arms. It is the bitterness of death he takes at her breast.”

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The power of the Sugar Cookie…again.

This will be the third time I have posted this article. The repeated ritual of making cookies each Christmas season brings all these thoughts back to mind. I love the ritual, and I love that my children enjoy the ritual. Funny how something as simple as a cookie can carry so many memories, for each of us.

My mother was able to make a home come alive in the holidays; the decorations were all well thought out and brought a sense of elegance and delight. Our meals were lavish at Thanksgiving and Christmas and we lingered over them. We learned conversation and story and the joy of being a large family. We learned that the seasons stood out and were different.

Sometimes, though, it was the more simple things that brought everything to life. Like sugar cookies.

Here are my thoughts last year, continuing to try to stir us to thinking about Advent as it will begin in just a week. Hoping these thoughts will help to inspire us to do something to make this Christmas, this Advent, stand out. Also aware that as we move through these seasons there is that ache for those who are not whole in our midst. For minds which no longer take in the wonder around us, or for those who have passed away. Balancing that ache with the wonder of the season can be difficult…sometimes, though, the simple things that we do to make the season stand out will provide comfort and delight when we need it most.

The Power of the Sugar Cookie.

The box arrived yesterday, stacked with a few boxes from Amazon. This box was different, though, and it stood out. The address was hand-written, and the contents were able to evoke memories and emotions, a power the other boxes could not muster.

Even Chip the dog noticed. He kept walking over and sniffing the box, waiting for me to take it upstairs and open to see what was inside.

Little tiny stars that brought back so many memories. This year my dad, with the help of a long-time family friend who stays with mom during the day sometimes, sent out mom’s famous Christmas cookies. The recipe actually goes back to her mom, and possibly beyond that, although I’m not sure. Grandma was a great cook, and Christmas was filled with cookies and candies and fudge and divinity and, yes fruit cake. No, you are not allowed to make fruit cake jokes around me. Her fruitcake was made painstakingly…cutting each candied fruit to the same size and spending a full day in the kitchen working away. The result was a cake that even as a kid I enjoyed, but especially with a special warm lemon sauce poured over.

This year, though, it’s the cookies that bring back the memories. These do not quite compare to the cookies of my childhood, but they still carry in their little flour and sugar forms all the memories of Christmas. Christmas was not Christmas without the sugar cookies. We made hundreds. Literally. I mean, hundreds….500, 600, 700 cookies. We would watch them be made, help decorate with icing and red hots and sprinkles, then load them all up on plates with Saran Wrap and walk the neighborhood, delivering these cookies to all the neighbors. And the teachers. And the Sunday School teachers. And friends. And then we would munch on them happily for days.

It has been a lifetime, it seems, since we made those cookies. Dad has pictures somewhere, lots of pictures, of the kitchen filled with cookies.

Now, a little box came and let me know that it’s Christmas time.

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The cookies are not quite the same. They still taste great, but the decorations are simple when they used to be detailed. The activity was more of a distraction to keep a mind occupied that tends to be overwhelmed by how much it cannot figure out…constantly questioning and being frustrated. Still, there was a hesitation when I opened the box, a moment of not wanting to eat these cookies, because, well…what if they are the last ones?

I’m wired that way. I have books from favorite authors where I refuse to read the last chapter because I always want there to be something I have not read from them. I admit, though, it would be pretty silly to leave a sugar cookie uneaten, and I’m not sure I have that much discipline anyway.

Mom’s mind is a little more gone than it was last year. It is a little more difficult to keep her on the phone when I call and I feel the distance acutely this time of year. Mom used to always tell me that the house seemed to love Christmas time, that it came alive as we decorated and brought that wonder in that only belongs to this time of year. She made Christmas a magical time, a time of excitement and wonder and delicious tastes as well sounds and sights. All of these efforts were not wasted, and now at 42 a little sugar cookie can evoke a whole avalanche of memories and feelings and emotions.

So, as I get flustered trying to get it “all” done this season, this little box of cookies stopped me. I’ve got laundry that needs to be folded and dishes that need to be done, and floors that need to be mopped. I have a lot of ‘duties’ to do….but there will be sugar cookies made this weekend. A lot of them. Steve does a great job of getting the house decorated and pulling out all the stockings and candles and garlands and lights. The house twinkles with a special kind of wonder, and in the midst of a world that is so full of sorrow and fear and tragedy…I hope memories are being made for my kids.

More than that, though, I hope that a foundation of wonder is being formed. That is part of the heritage of my mom. There is an importance to the wonder and to the beauty. It is not merely decoration. It is a statement that these things matter and that it is important to feed our souls with beauty…with music and with images…and even with sugar cookies sometimes.

Thanks, Mom and Dad….

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