Alzheimer’s Awareness Month: Chapter 16

Alzheimer’s Awareness Month: Chapter 16

Chapter 16
The Agony of Letting Go: July 19, 2012

God raised Him up again, putting an end to the agony of death, since it was impossible for Him to be held in its power.
—Acts 2:24 NASB

She was screaming and cussing so loud I wanted to cover my ears, slouch down into the chair, and disappear. Anger spewed out of her mouth as the nurses and doctors in the emergency room reviewed her health history with Dad. Tears threatened to overflow as I watched her body twist and turn with torment in the hospital bed. Had I not been born of her body and known her unalterable love for Jesus, I would have sworn demons had possessed her.

We had been warned paranoia and personality alterations were all parts of the disease. We knew someday we would look into her eyes and see only vacancy. We knew the slow fading of sweet Mama was a guaranteed part of the storm.

The storm has worsened for Mama. She is rarely sleeping at night and needs constant care and attention during the day. Mama’s mind is rapidly betraying her. Fear and panic are engulfing her at every moment, day and night. Glimpses of the real Val are becoming rarer and rarer to behold. The Alzheimer’s is raging a nasty war. Mama’s brain is not resting, and her soul is floundering. We are desperate to offer her relief from this hell on earth—the yelling, crying, anger, uncontrollable weeping, confusion, and heart-wrenching sorrow.

Every ounce of our energy, resources, and ability to keep walking with Mama in a healthy and steady manner has dried up. The disease has made it impossible for us to care for her in the way she is worthy of being cared for. We need help.

Sometimes love means admitting your mama to a psychiatric ward as your heart bursts into a million pieces inside of you. Sometimes love means listening to her as she is calling after you, begging you to turn around and rescue her from the white walls of the unknown. Sometimes love means walking down a long, terrifying hallway and hearing the metal doors snap into lockdown mode as you exit; you’re on one side of the door, and your mother is on the other.

The Notebook has nothing on us. Today sucked. We are swimming in a pool of guilt.

Memories of today—nothing but raw, bleeding sadness—will haunt us for the rest of our lives. After we’ve walked through today’s experience, surely her death will feel like a glorious gift.

The nurse must have seen the despair and horror in our eyes. She slowly walked up to our huddled group and whispered, “We are going to stabilize your mom and your wife” as she nodded kindly toward Daddy. “We are going to find the perfect cocktail of medicine, so the disease will stop suffocating her brain. I promise each of you, we are going to give her rest.”

A Giant Secret Revealed

A Giant Secret Revealed

*deep breath*
I feel like I’m on an awkward first date, and it is hard to find comfortable words to express myself.

The printer told me he was tired this morning. I patted his plastic, exterior belly and nodded, “me too!”

Nearly 5 1/2 years ago, I started this blog with the intention of keeping everyone updated regarding our family’s journey with Alzheimer’s. 
Three years ago this month, 6 weeks after Mama died, I determined in my heart, someday, I was going to take all of my writings about her and publish a book. And then….LIFE!  
Thankfully, I did the only thing I knew to do at the time; I kept writing. I am so glad I did, because let’s all be honest here, my writing didn’t peak (shall we say) until after Mama died. I giggled as I reviewed the beginning entries from 2010. God love you guys for reading. Just bless it.
In past 5 1/2 years, I’ve written over 70 posts regarding my sweet Mama and our dance Alzheimer’s and its after-math.
41,726 words to be exact. 
41,726 words that built me. 
41,726 words that healed me. 
41,726 words that broke me. 
41,726 words that owned me. 
41,726 words that kept me from sleep. 
41,726 words that gave me peace. 
41,726 words that gave me life. 
41,726 words that offer me the ability to cross a bridge of time and memories back to her.
41,726 words that taught me how to write, REALLY write.
41,726 words that refused to let me hide, mask or pretend.
41,726 words that were so bossy and relentlessly plagued my soul to pen day and night.
41,726 words that wrote a story. My story. Our story. Mama’s story.
It is with sweaty palms, a sick pit in my stomach, and a flicker of hope in my eyes, I introduce you to my very first manuscript, “Living In The Storm”…. Mama’s Story.
5 1/2 years in the making, a life time of memories.
I wanted you to be the first to know because you’ve been so kind, faithful, encouraging, and supportive since the birth of this blog… and now this book. You, yes YOU, helped me write this book because you kept coming back for more. You kept sending me kind messages, quiet squeezes in passing, and gentle prodding with your words, “keep writing!” 
And so I did. I kept writing when it was painful, scandalous, edgy, and flat out fun and joyous.
You helped me write this book. THANK YOU!
“Now what?” you ask.
Well, we have determined to self-publish this first manuscript with CreateSpace via Amazon. The time frame we are working towards is a book release the first of April, 2016! 
11 weeks. I just threw up in my mouth.
Because of this deadline, the blog will be sorely neglected. But that’s ok, I know yall will be gracious, because BIG changes are coming to the blog too! She’s getting a FULL make-over. WOOT! WOOT!
“What can you do? Righ now? This second?” you ask. Aw, I’m twitter-pated you asked. 
1. Keep a close eye on my facebook page, Sara Littlejohn for all the up-to-date breaking news. Like the page if you haven’t. Share the page. Invite everyone you know to join and like. 
Follow me on twitter @saraslittlejohn. 
Follow me on instagram @saralj4
2. Share this blog post EVERYWHERE! We are trying to create an environment of anticipation and excitement, we want EVERYONE to join.
3. Last and for real, (no christian mac-n-cheesy meant), PRAY. 
Pray for future readers. People walking through the journey of Alzheimer’s, and all their broken places. Pray the book would give them hope and healing.
Pray for my sweet family as they walk me through this very, “new to us all” experience.
Pray my heart would be protected from the lies regarding my art; my soul. Lies of inadequacy, unworthiness and insecurity. “No one cares about your words, Sara,” plagues me in the dark of night. 
This week, I read on the very wise twitter, a quote I love,
“We write to taste life twice!”
 I wrote this book so I could talk to Mama again. So I could see her face flash though my brain as my fingers sped across the key-board. I wrote this book so I could hear laugh again. I wrote this book so I could be close to her again. I wrote this book so I could taste the sweet, sweet, fragrance of Mama once again. I wrote this so I could hold tightly to memories and write them all over my heart one.more.time. I wrote this for her, because she would have wanted me to! 
I miss her.
~Sara
Living In The Storm, Alzheimer's
3 Things Every Adult Child Needs Their Parent To Say To Them

3 Things Every Adult Child Needs Their Parent To Say To Them

It was a sunny, April day in 2007. I was 7 months pregnant with our third daughter, Lucy. Katie was 3, Julia was 18 months. Mom and Dad called me on speaker phone to confirm what we had been suspecting for years. The diagnosis was in fact, early on-set Alzheimer’s.

This crazy-amazing, crazy-painful thing happens when you become a parent. And I suspect it happens not just for those who become parents, but simply anyone who passes into the chamber of adulthood. (The two happened for my simultaneously. I gave birth to Katie at the wee age of 21. God bless her.) Through the lens of adulthood, through the lens of parenthood, we are able to more clearly see the stories of our very own parents. Therefore, a seemingly crystal-clear view of our own childhood. Crazy-amazing. Crazy-painful.

Just as I was beginning to get my feet under me as a mama, I desperately needed to walk back THROUGH my childhood, not AROUND my childhood with my mom. I had so many things to ask her, to apologize for (mainly for stealing all her sane brain cells) and honestly, I needed to express to her some wounds I had been carrying for far too long. And at the end of the day, I wanted to sit at her wise feet and ask, “How did you do it?!”

Alzheimer’s does not always smile a friendly smile on rehashing the tricky road of hurt. Alzheimer’s steals the ability to navigate such bumpy waters and emerge healed. Bottom line, any of the complicated matters my heart needed to discuss with my mom, would only hurt her with an everlasting, earthly hurt.  On this side of glory, she would never be able to emotionally heal and process from ANY critique or questioning. The disease held her mind in captivity.

And so as an individual soul, whatever frustrations I had, whatever cracks I needed her balm to heal, I had to find that peace and forgiveness by never uttering a word to her, but by transforming those wounds into energy to serve her and love her well until her very.last.breath.

As a daughter who now stands on this side of losing a parent, from a place of much humility and tender thought, I have some advice for parents with grown children, and for grown children with parents.

Parents of Grown Children,

We need you say 3 things to us before you die. And we might need you to say them to us more than once.

I am 12 years in to this parenting gig, and I am overwhelmed at the number of times I have ALREADY wounded my children’s hearts. It is VERY sobering to realize that the decisions I am making on their behalf, decisions I have ALREADY made on their behalf, will live on in them forever.

Parents, say you are sorry.
Grown Children, forgive your parents before they ask for it.

It is healthy and good to walk through our childhood. It is good to name the things our parents did well and pass them on to the next generation. It is also healing to name the things that they got wrong, process it deeply and purely; grow from it, heal from it, but you MUST NOT camp there.

My mom spent a lot of her final days and years apologizing, but the painful kind of apologizing. The kind of apologizing you wanted to plug your ears and wish away. It was awful to hear her apologize for things she had no control of, “I’m sorry I fell. I’m sorry I forgot. I’m sorry I spilled. I’m sorry I misspoke. I’m sorry I wet myself. I’m sorry I’m confused. I’m sorry I’m such an inconvenience.” My heart would break each time. And with each apology, as a family, we attempted to meet them with, “It’s ok, Mama. It’s ok. You don’t have to apologize. It’s ok!”

Grown children, regardless of the pain inflicted, forgive your parents. FORGIVE.YOUR.PARENTS. They are broken vessels living every day with a bit of sovereign grace to see them through. I do not know your pain, nor do I pretend to understand it, but I know the forever mark they will leave on your mind and in your heart. And when they are gone, telling them they are forgiven is no longer an option.

Parents, tell your children that you are proud of them!
Grown Children, be willing to admit in your heart of hearts, how desperately you need to hear these words.

She smoothed the table cloth over and over again. She was nervous and was trying to busy herself with a task. I was cleaning up lunch, and because her ability to move was limited she could only watch me. I cannot imagine how that broke her. The Mama, the matriarch, the one who spent her life busying herself in the kitchen, could only sit helplessly and watch. She apologized, “I’m sorry I can’t help! Let me do the dishes. Find me the broom and I’ll sweep”, she rocked forward trying to sweep crumbs into her soft palm. “It’s ok Mama, you have cleaned up more meals than my brain can imagine. Just sit there and talk to me.” She sniffed back tears. “You’re such a great mom, Sara Suzanne!” she whispered, barely audible to my ears. My throat clogged with ugly tears, “I learned from best,” I choked out.

You cannot imagine the life-gift written on my heart when Mama would compliment me. For every crappy mom day I have, her words of encouragement remain and pull me through.

Parents, tell your children you love them!
Children, take every opportunity to do the same.

She said it constantly. Coming and going, calling and hanging up, sitting, sleeping, eating, walking. A brief pause, turn of her head and gentle, “I love you!”

The disease made it urgent.
The disease made it more beautiful every time she said it.
The disease made the words stick and linger.
The disease made it flow more often and more importantly.

Alzheimer’s took her brain, but never her love.

Her hands were the softest I had ever held. Her chest rose and fell rapidly. Death was approaching and our time with her was ending. I nestled my nose along her frail and cold cheek and wrote on her heart the very thought that I wanted her to take into eternity, “I will love you for always!”

Isn’t it time for you to lay your weapons down?
Isn’t it time to apologize for hurt you’ve caused?
Isn’t it time to forgive?
Isn’t it time to say something kind, something life-giving?
Isn’t it time to receive such life?
Isn’t it time to say, ‘I love you?”

It is. I just know it is!
Now go…you might not have tomorrow!

~Sara

Alzheimer's, 3 Things Every Adult Child Needs Their Parent To Say To Them
(Photo Cred: Capture Photography and the brilliant, Jessica Flynn)