One Year Ago

One year ago today we stood by Susan's bed as she lay dying. For better and for worse she had become such a part of our lives. I have spent the year reflecting, refreshing and rethinking it all- us all. Today, I will just remember her...what she taught me, what I know now that I didn't then, the friendship we developed, the love she gave, the hardships, the joys...all of it.
Today I will remember; tomorrow I will put those thoughts into words.

Surviving the Storm

Tomorrow is May 10th- one year since the tornado struck our community and our home. Ironic that there is the possibility of severe weather again tomorrow. Ever since that storm whirled its way into our lives last year, nothing has been the same. It was as if an unknown storm had been brewing outside our peripheral until suddenly…destruction.

Looking back is way easier than actually living through this past year has been- for many reasons. One thing that is undeniable is that Susan never did well after that tornado. She never liked change, in fact she had spent her entire adult life taking precautions and being safe. But you can’t lock out a twister- it just spins on in...reeking havoc and messing up our not so neat little lives.

At first, after hunkering down in the bathroom while the storm ripped and sucked all around us, Susan seemed bewildered and confused.
She did realize we had been hit, but wandered around with that familiar look that you see on everyone’s face just minutes after any kind of unexpected disaster strikes. That blank look that says,"What just happened and how did I get here?" We all had that look; but after a while, your mind catches up with the event as everything begins to sink in. I remember jerking awake in the middle of the first few nights and sitting straight up in bed as my sleepy mind remembered that we had been hit by a tornado. For days, even my eyes were in disbelief of what they saw. As our brains and bodies switched to recover mode- we made calls, picked up debris, trimmed fallen trees and began the repairs…. Susan did not. She went on and tried to re-gather herself, but in retrospect I see that she never really could put her remaining puzzle pieces back together again. She still ate well, laughed often, enjoyed things, went places and danced with the rest of us silly people, but now she was frailer and more delicate, it seemed.

I am aware that emotional stress is hard on our physical bodies and I wonder how I might have better protected Susan from it. I don’t think that I could have really; I couldn’t even protect myself. Life happens and there is much we cannot control. But who is to say that in many ways this year has not really been one of mercy to us all? In fact, I believe it has! For that, I thank God.


I want to end with a story that leads to a scripture. My children and I were working with the American Red Cross after the May 3, 1999, tornado in Oklahoma. A woman and her family came to us for shelter and food. She was still wearing the same house clothes that she had put on to relax after work two days earlier. She sat in her comfy clothes as she told us how her and her adult children had hunkered down in a small closet underneath the stairs of her house. With big eyes, she relayed how they had listened to the forces of nature sucking, shaking and ripping at their house and lives. Huddled there, she began to pray out loud, “Lord, you said that you would go with us in the midst of the storm! Now Lord, we are in the midst of the storm and we ask that you would be with us here!” He did for them and He did for us! No matter how hard this past year has been for us, I have clearly felt His amazing grace abounding through it all!


So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.
-Isaiah 41:10(NIV)

Butterflies Are Free!

Yesterday my daughter, Kiara, grandaughter, Victoria, and I participated in a butterfly release. It was a symbolic way of remembering Susan. I guess there were about forty people with us, remembering those we loved- all of us together shared a moment of hope and inspiration.







We released our butterflies into a cool Oklahoma day. Butterflies like warmer temperatures though, so were slow at taking off. While others of them more easily flew off into the air, ours lingered in our hands and even stuck around a while. All symbolic, I suppose.















Ironic but meaningful, I thought. Because those of us sharing grief stood alongside the same nurses and staff who had (not so long ago) stood beside us during our loss…comforting, thoughtfully caring and sharing together. Thank you once again to Excell Home Care and Hospice! We love you all!















Butterfly Release


Monarchs
Painted orange
Hesitant to fly
To leave their little sleeves
They lingered on.



Finally they spread their wings
And stood still- but open
Feeling
Perhaps listening
Until they were ready.


Off and out
Into the cool air
Some fluttered near
Others flew upward
And onward.

Their lives will be short
As lives go
But they are free
And beautiful
Filled with purpose.

Goodbye butterflies
Do it well
Live it right
Make it count
Monarch

Flutter first
Up high
Free will
Fly away
Farewell...






.

















(With Victoria was Brenda, who took excellent care of Susan)

Holidays Without Her

No, Susan was not physically here with us during the holidays, but everywhere I turned, there she was! I saw her in the colors of fall: the brilliant golds, warm oranges and bursts of crimson…she really loved those colors.

For Christmas I borrowed a tree and decorated it with new colors that I loved…colors I had never allowed myself to use. In fact, this year I never even unpacked the sentimental ones; don’t know when…if…I ever will. Susan’s cross, the blingy ornament that I bought her two years ago, appeared. Funny thing, it never had hung on a tree; Susan wouldn’t let it. She kept it in her purse and would periodically rediscover it as she stirred through her purse looking for…um…something. Sometimes she would stir through her purse for hours and in the process, rediscover the cross over and over. She would hold it in her hand and stare at it as if she had never seen it before. She would smile at it as one might smile at the first sight of a long lost friend. “Look Karen!” she would turn it my way with pride on her face. “Wow Susan! That is beautiful!” I would say over and over.



Susan’s holiday snow globe somehow found its way back into our living room. Periodically I would hear its music begin to play and turn to look…instead of Susan’s hands holding the glass ball and her face looking dreamily at the little manger scene inside, there were little hands winding the music up and shaking the snow. Susan’s little snow globe had become my granddaughter’s happy pleasure. Everywhere, Susan was here…her name was still on gift tags… her favorite holiday cookies sat unbought on store shelves. Susan still made us laugh; we laughed as periodically someone would spontaneously say, “Remember when she…” She made us cry because we miss her. She made us smile; just quiet smiles- the knowing ones. So yup, we made it through the first holidays without her, in a way.

Susan's Final Exit

It has been ten weeks since Susan left our house for the last time. This time she was not running away or looking for a car.
She did not wander aimlessly around the neighborhood or pace the driveway inserting her bedroom key into our car door locks. Nor did she circle our house knocking on windows, pounding on doors or ringing the doorbells while calling out, “Hello, is anyone there? This is Susan. Could you open the door please? I need to talk to you!” No, there was none of the familiar drama this time.

Susan’s last exit was not nearly as dramatic as the past few years of her life, although it was equally as memorable. Her death was a peaceful one. She was comfortably at home in her own familiar room. She received calls from both of her daughters', who spoke things in her ear and sang a beautiful song that she seemed to enjoy.
Then, as the night went on, I stood with my husband and daughters' while their beautiful voices sang to their Grandma. Then, we all sang familiar hymns and other songs that we knew she loved. We held her hands and kissed her face and spoke gentle words of encouragement. She was not alone and there was no doubt that she was loved. She was.

As the sun rose in the morning she slipped away...for the final time...

It wasn’t until later in the morning that we allowed the funeral home to remove the body. Jeff needed the time.


He escorted her body as it was wheeled onto our front porch and toward the driveway. I stepped onto the porch and watched her go. I cried. It was hard to let her go. For the first time, I did not need to follow her to ensure her safety. My job was done.

The days leading up to this moment had been timeless and slow, but gone in a flash. In times like these, certain moments imprint themselves forever in your brain ever so clearly, while simultaneously the ‘whole of it’ is being blurred. But one thing was clear as I stood on our porch that morning, she was gone and we would never be the same.

Living- really living is a wonderful thing; but make no mistake, dying is the final act of living on this earth and can be equally as beautiful. I have come to grasp that there would be no death if there had not been life and no life without a death. So, in death- I am thankful for the life. And in life, I accept the eventuality of death. Death can free us up to live- if we will. I left Susan’s bedside ready to live. Thank you, God, for all of life

Until We Meet Again

Susan (74) passed from this earth and into heaven on Thursday, September 2, 2010 at 6:37 am.

This blog, about her-but also about me, will continue until I feel I have said all that I have to share in this format and on this subject.
For a short time though, I will take a little break. We will be traveling to Florida to remember Susan with the family. I will use the time to think, to refresh, to pray and to reflect on Susan's life and my own.
So, see you all when I return.

To Susan: "Thank you for the memories, the lessons, the comfort, and the joy and love... Until we meet again!"
Friends and Followers: Thanks for doing life with us!

Roller Coaster Experience

“The things that matter most in our lives
are not fantastic or grand.
They are the moments when we touch one another,
when we are there in the most attentive or caring way.”
-Jack Kornfield

Life with Susan has changed in many ways; still, others are very much the same.That familiar "roller coaster ride effect" continues. The dawn of each day dips us low or raises our hopes high only to be brought down again by the inevitability of things like gravity and death. Today we are riding in the low zone; the place where we coast low and seemingly safe before the next turn. Susan is not good, but steady. We are hanging on, not sure if or when this ride might stop. Even more confusing is that feeling of not knowing for sure if we want it to.

We, meaning (this week): Katrina and Kyle, Kiara and Matt, Jeff and (of course) myself. This roller coaster is not so nauseating when there are buddies sharing the seat, experiencing life’s ride with us. No one should do this alone; not even Susan. We are here with her- they are here with us, at least for today. We will not worry about tomorrow; it will take care of itself.

Together we watch Susan grow weaker and frailer. She is less interested in food, drink, conversation or even who is in the room with her. She responds to pain and irritation more than anything. She sleeps more and seems almost to be fading away before our eyes. It is a very hard thing to watch. We pray for comfort and peace for Susan. For her, we can’t help but want it to end. None of us wants to watch her suffer any more.

We struggle to keep her body from bed sores by turning her bony little self every so often. We prop pillows in every possible angle to keep her knees and ankles from touching or to keep her legs elevated so that her heels don’t rub the bed. This brings back sad memories of my mother’s last four years after her brain surgery. In a way, I am thankful for that experience that helps me care for Susan; on the other hand, Susan being here has kept me from fully grieving my mother’s passing (less then two years ago). Now, as I look at Susan, I see my sweet mother as well. I don’t like to remember my mother’s pain and I certainly don’t like to watch Susan’s.

When I walked into Susan’s room yesterday her eyes were red and wet as she lie on her side starring into space. “What is wrong, Susan?” I sensed that she was having a moment of deep thought that I was not privy to. “Susan, don’t worry. You know that Jeff and I will take care of you as long as you are alive, right? And, everyone loves you.” She turned her eyes to me and more tears came, but no verbal response. “Susan, heaven is a good place to go. Don’t be scared. When you are ready to go be with Jesus, it is okay. But if you want to stay here with us a while, that is okay too.”

There we were, face to face, eyeballs connecting. I thought about this bond we have developed these past two years, two women experiencing some of this crazy life together. I smiled. She starred deep into my eyes as if she wanted to say more. I held her hand and reminded her of my love- Jeff’s love- all of her children’s and grandchildren’s love- Jesus’ love…

I can’t help but wonder if this roller coaster experience that I never wanted to have is coming to an end. And oddly enough, I feel sad if it is. Sad, because nothing on earth is better than truly giving of one’s self in a way that doesn’t give back. It is then, and only then, that we discover that we are the recipients of far greater gifts than this earth could ever give. If I had not been Susan’s caregiver, I would have missed out on all that I have learned and shared, things that can never be gotten in any other way. For that, I thank Susan.

(FYI: The pics on this entry were taken sometime this year on some of her "better days.")

Hospice

(Pictures of Susan will be protected during her most recent decline, to respect her privacy.)



Hospice was called in on Monday.
Here is what happened:

After returning home from the hospital on Tuesday, August ninth, Susan continued on a visible decline. Day after day she was weak and her appetite was slim to none, although she still suffered with extreme diarrhea. On Monday morning, I (again) found her lying in the bed with messy pants and sheets. I managed to assist her to the toilet and shower, where we cleaned her up.

Back in the bedroom she could hardly hold herself up long enough for me to change the linen. We redressed her and put her back to bed. She was weaker than usual and just wanted to rest. Other than her daily round of medication, I couldn’t get her to eat or drink anything.

The concern that Jeff and I had felt over the weekend prior, had seemed to resolve itself somewhat on Sunday. Maybe she wasn’t dying (as we had whispered among ourselves.) In fact, she was so perky on Sunday that I had encouraged Jeff to continue with his plans to go out of town on business for the week. I don’t mind being alone; I was a military wife for twenty years.

I was looking forward to seeing my friend, Martha, that Monday morning and spending some time with Kiara later in the day -not to mention, and getting a few overdue projects worked on. Who could have known? Martha was still there when our favorite nurse, Lawanda, came to check on Susan. Upon entering her bedroom, we discovered that Susan had slipped into a deep sleep that we could not wake her out of. Her blood pressure was more than dangerously low and other vital signs were somewhat disconcerting. Susan would not respond to anything, not even the needle prick from her B-12 shot! Nothing- just listless Susan sinking deeper into her peaceful sleep.

To sum up the week, my week alone turned into a shared experience with three of Susan's children who traveled from every coast to be with their mother. An entourage of nurses, aids, medical suppliers, delivery people, chaplains and even a priest, have become the norm. Susan likely has suffered several small strokes again, topped by the dreaded hospital transferred C-Diff. By weeks end, she is still breathing and perhaps even thriving! She is not walking or able to really converse, but with a woman as strong and determined as my mother-in-law, tomorrow is anyones guess! As I end this blog entry, the words to a Bill Gaither hymn are running through my mind. If you know it, sing it with me.

“God sent His son, they called Him Jesus
He came to love, heal, and forgive.
He lived and died to buy my pardon,
An empty grave is there to prove my Savior lives.

Because He lives, I can face tomorrow.
Because He lives, All fear is gone.
Because I know He holds the future,
And life is worth the living just because He lives."

A Willow In the World

Warning: This entry is not for the faint of heart! What you are about to read might not groove well with the rest of your day. But I feel the need to write about it because it is the truth! And besides, it is all about my day and Susan’s reality.

I have never been a quitter and I don’t plan to become one. But if I am going to be honest, I have to say that the thought of giving up this whole care giving thing has crossed my mind- more then once these past few days. I mean, the thought that this entire episode could in fact be a new stage in Susan’s Alzheimer’s disease, really scares me. The thought that she may never regain her continence or her strength or any lost piece of where she is or who I am- it just doesn’t jive in my gut. Not yet. I hope it never does.

Care giving of this caliber is not for the faint of heart! Fighting this or any disease is not for those who are weak. But sometimes, in circumstances such as these, we find our strength- if we choose to. And if you have chosen to fight for yourself or your loved one, in the midst of all the pain and suffering and grime and loneliness, I think you will find joy, compassion, love and an inner peace like you have never experienced before. So, if you don’t think you have it in you- maybe you don’t; but if you think you might, I bet you do! God gives us the grace when we need it, not before.

Today is Friday. Susan came home from the hospital on Monday. Here is how my week has gone: each morning I find Susan in some precarious position: in her bed, on the floor, or tangled half in and half out. Her pull-up is always full of diarrhea, which can be smelled before I hit the door to the hall. Each day it has leaked onto the sheets and bedding, plopped on the floor, and smeared up her back and onto her clothing. I put on my disposable gloves and retrieve Susan slowly from her awkward position. With my assistance, she scoots (extremely hunched) to the toilet, where I lower her pull-up and set her on the toilet. I place it into a fresh garbage bag, along with Lysol wipes that I use to clean plops from the floor. The soiled bed sheets and dirty clothing are gathered into the laundry basket as Susan sits releasing more of her antibiotic reaction (I suppose).

Meanwhile, as I am warming the
bath water, we argue about Susan’s need for a shower, until eventually she is forced to step inside. Gloves still on, I squirt a body wash over her body and I cleanse her backside as she scrubs the front. Sometimes I even clean feces from her hair. Finally, I wrap her in a towel and hold both her hands as she steps out onto the floor. She leans on me as we walk the four feet from bath to bedroom. There, I set her down on her towel and she continues an attempt to dry herself up while I gather fresh clothes. My gloves are deposited into the new bag of trash; I tie it up and place it at the door.

While assisting Susan with a change of clothes, we run through some simple stretches and arm and leg lifts just to keep her from tightening up. She loves it when I let her kick my legs for exercise. I try to crack a joke or two in an attempt to make her laugh. If she is not in the mood, we work on just the face- a smile. I try to coax one out of her by reminding her that, A merry heart does good, like medicine.-Proverbs 17:22. Finally she forces her lips into a flat position, which equals a smile for her these days. She doesn’t seem to feel well enough to talk much; however, one day this week she surprised me with: “Karen, I feel like a willow in the world!” Once I verified that had actually said what I thought I had heard, I asked her what she meant by that. “Well, when I wake up in the morning I just feel like I’m going here and over there- like I’m just dizzy. You know.”

As I am returning her safely onto her freshly changed bedding or propping her up in nearby chair, I can’t help but remember the sharp, quick, stylish beauty that she was not so long ago. I think of Jeff’s father and how much he loved her. I think of how he would feel if he could see her now. Change has come into all of our lives rather unexpectedly these past few years and Susan is really feeling it this week. I admit that there is a bit of fear for our future, topped delicately with a dab of faith and hope- for whatever it holds.

Once I leave her room, I wash up thoroughly and head to the kitchen to find her something nourishing. Usually she will eat a few bites of applesauce or half of a banana. It is placed on a red tray (her favorite color) with her morning medicines and one or two drink options, accompanied with a straw and napkin. Back in her room, I feed her as much as she will tolerate, and leave the tray beside her on the bed in case she gets the inkling for some more. She never does.

By then, Susan is generally half asleep. I open the shade to let in some sunshine and spray her room with Lysol and sometimes burn a candle. That is when I head for the laundry room with a new set of gloves and begin washing the soiled sheets and towels. Periodically throughout the day, I re-enter Susan’s room to check on her. If she is clean, I simply check her and reposition her body from side to side with pillows (to prevent bedsores). Sadly, bedsores are now a concern with Susan. She developed a tender spot on her back side while lying flat for a week in the hospital (under the care of her first doctor who didn’t believe she could walk!) If, when I check her, she is soiled, then the entire routine begins again!

Good morning world! We are alive in Oklahoma! How about the rest of you?


(PS. Thank God for Jeff!
He was up with Susan the last few mornings at four AM feeding her and showering her. He is such a good husband and son. And thank God for weekends! Jeff and I split the chores, I showered Susan while he gathered and washed her laundry and so on.)

Hospitals

I last blogged on the plane as we were flying back to Oklahoma, where we faced an ongoing battle with Susan’s health and medical care. The details are mostly unimportant now, looking back. What is to be learned and gained from it all is that each of us must be proactive in our own health and health care and we (caregivers and parents) must be proactive on behalf of those we love and those who cannot fight for themselves.

What put Susan in the hospital is questionable, in my estimation. They attributed her original weakness and fever to a UTI (urinary tract infection). The truth is that she had already been on antibiotics for it for several days prior. Then, her new intravenous antibiotic caused a severe allergic reaction that overtook everything else. Kiara, Ted and Megan did a great job of following Susan’s care and corresponding with the doctors in our absence. They sat by her bedside, fed her, and kept everyone informed and updated.

After I arrived, a discussion with her hospital doctor clued me in that he was not a good listener. He arrogantly had preconceived ideas about Susan’s condition. He told me that she had another neurological disorder that would cause her to never walk again, but couldn’t be more specific when I pressed him. He would not consider physical therapy even though I assured him that she had been independent only a week earlier. He insisted on releasing her and (after learning she would not be put in a home) recommended a temporary facility where she could regain her strength before returning home.

Although I was opposed (at that point) to any talk of putting her in a permanent nursing facility, a temporary facility that would enable her to build enough strength to return safely home, was considerable; but not without my approval. So, Megan and I left the hospital and (without warning) drove to check out this place the doctor had chosen. I was appalled at the conditions and knew that NO MATTER WHAT-Susan would never be a patient there. I would rehab her myself, if necessary!

I made some calls to friends who had required similar rehab in the past. We made another unexpected visit to a facility they highly recommended. There, we found professionalism, cleanliness, courtesy, a homey atmosphere and a great rehab department. The following morning I made a call to my hospital contact person and put in our request. By the afternoon Susan had been accepted into the new facility and was on her way.

Jeff and I set up her room, tucked her weak self into her new bed and explained things to Susan in a way she might understand. We told her that this was a special place she was chosen to go to- just until she could walk again. We assured her that she would come back to our house when she was ready. She asked many questions and we answered. She was happy; so were we. I will admit that I worried all night about getting a call to pick up Susan because they don’t accept wanderers or combative patients. I was pretty sure she was still too weak to fall into those categories.

The next morning Megan and I headed for the rehab facility across town. I didn’t know what to expect since everything was new to us and to Susan. I hoped for the best. Of all the concerns I had had, I would have never guessed at what we did find! Susan was not in her room; she was in her chair at the end of the hall. A therapist walked us down toward her as she explained that Susan seemed to have a fever today and they had already put a call in to her doctor.

My first glimpse of Susan sounded the alarms! I leaned in toward her and touched her face, “Susan, Are you alright?” My reaction must have alerted the physical therapist that something was off, since she began explaining, “We weren’t sure what was normal for Susan since we don’t know her.” Susan’s entire body was rattling and her mouth was open with her upper teeth dropping up and down over and over as she shook. Her skin was an odd blotchy red and spreading. “Something is wrong with her. This is not normal for her!” I warned. More calls were made. Jeff arrived to a scurry of people making calls and checking on Susan, followed by an entourage of emergency responders in our faces asking questions as Susan grew worse and worse. By the time she was taken back to the hospital by ambulance, she was delirious and could not hold her head up.

They again tested her for a UTI- negative. Pneumonia was the diagnosis this time. She spent five more days in the hospital. She has now been home for two days. We chose hospital to home (rather then a rehab facility), since we had gotten her up ourselves and walked her down the hospital corridors. (We refused to believe she would never walk again!) Too bad we didn’t run into the first doctor, who could use a good lesson in listening skills.

Up and Away

So, this time I really am in the air and my getaway is for real! Well, almost…
In fact, this blog is being written from my small seat on an airplane flying somewhere over Utah- Kansas- Colorado and Oklahoma. It is true, Jeff and I went away; the discrepancy lies in the actual act of “getting away.” Although it was Jeff’s business trip to Utah that initiated the get away, I took advantage of the opportunity to tag along. It was too tempting to resist, since our daughter, Katrina, and her husband Kyle, are stationed in Utah, with the Air Force.

Our time with our children has been sweet and joyous while the scenery was awesomely inspiring. But “getting away from it all” seems to be non-existent in our lives right now. Honestly, I could write several chapters in my adventure novel- all about what we had to deal with on our “get away” this week. It became all too clear to everyone around us that really getting away is no longer possible for us, not at this time in our lives, anyway. We really had tried. I figured, if we prepared well enough, it would be easier to comfortably leave it all behind. Our caretakers at home vowed not to call us unless it was absolutely vital. They knew how much we needed the time out. In fact, only a few chosen people even knew we were leaving.

With Susan in our home, lots of preparation goes into getting away. Anyone with children or a loved one requiring ‘special care’ can fully relate to what I am saying here. It may seem to be all somewhat routine; however, with Susan it is vital to go over every possible scenario, because the truth is, every scenario is not only possible, but likely. “What if she has a seizure…a mini-stroke…wanders off…has high blood pressure…” We review symptoms and responses, nurse’s schedules and medicines. We leave lists, important numbers and medical files. And of course, we never leave town without a legal temporary Medical Power of Attorney, signed and notarized.

I will say though, that with all of that finally taken care of, when we drive out of the driveway, we are generally truly able to leave it all behind and just enjoy where we go and what we do (away from Susan). Or should I say, we used to. On this trip to be sure, Susan has caused us worries, time and many phone calls; but remember, she is not our only concern in life. Imagine that! She was not our only disruption from the beauty of Utah, the sweetness of our daughter and the awesomeness of the mountains and waters that we so enjoyed.

We are traveling home to a house without Susan- only caregivers rushing back and forth to the hospital where Susan is now a patient. The “what if’s”… happened. Perhaps it was another seizure or stroke, an infection or possibly even pneumonia. From what I hear though, Susan is keeping the hospital staff on red alert (as usual)! I admit it, I am laughing. That means she is well enough to be Susan. She is ripping at her IV’s , trying to disconnect her catheter and attempting to discharge herself from the hospital, where she is sure she does NOT need to be!

It looks like we will be flying
into Oklahoma City and heading directly to the hospital. I am sure that Kiara, Ted and Megan will be glad to see us coming. I bet they need a break. And I thank them all for working to give us one.

(The photos on this entry were all taken on out trip to Utah, including the one of my daughter, Katrina.)

Sad Endings

There has been A sad ending today to the recent Silver Alert for Mrs. Georgia Lehar(84) of Oklahoma City. Today, a road crew discovered Mrs. Lehar deceased inside her car, alongside a local road.

Mrs. Lehar was last seen on Friday evening, July 2nd. The Silver Alert was issued on Sunday, July 4th. She was reported to have a history of high blood pressure and thyroid problems, both which required medicine. Like the others, Georgia also had a history of getting lost and becoming disoriented and was suffering from signs of dimentia.

I can't help but wonder what happened in her life these (almost) two weeks. Where has she been and why has she not been spotted before this? She had to be somewhere! I worry that she was alone and scared; but I know that when Susan wanders off confused, she doesn't feel scared- she feels determined and aggressive. But Susan has never been wandering more then three hours; even then, I was close by.

My prayers go out for the Lehar family tonight. I pray not just for them, but for the next person who becomes confused and cannot find their way home. I pray for myself, that I will always be close on Susan's heels to protect her from her own confusion. I pray tonight for all of us who care for all of them.

Susan Is Falling

Susan has fallen three times in the past week. She seems to be dizzy and weak in the legs. She has chosen to stay in bed more often then usual and has eaten less. Otherwise, things seem rather normal with her. We are wondering if she may have a little virus or if she may be having a reaction to her medicine. She is scheduled for a doctor visit this week and the nurse will stop by tomorrow.

The first fall happened at night when she was overtired but would not go on to bed. She wanted to get milk for the baby and refused to listen to Jeff when he told her she needed to lie down. The sudden loud THUMP scared our houseguests and sent them running for Jeff and I. We found her in the hall with her rollers on the floor circling her head. The thump had knocked them all straight out of her hair. Jeff and Ted managed to get Susan up and escort her to bed (where she should have been in the first place).

The second fall happened inside her bedroom one morning. From the kitchen, we could hear her low voice calling for help. That time she was lying on the floor blocking the door from opening. Only her hand was visible as it grasped the lower portion of the door. Jeff squeezed his way in and again, Ted and Jeff lifted her to the bed.

One day last week she expressed her feelings about this whole thing. She stood in the living room by her rocker, half-looking over at me in the kitchen. Seemingly out of nowhere she began, “To tell you the truth, what’s happening to myself right now, I can’t believe.”
“What do you mean, Susan?” I wanted to hear her thoughts.
“The things I used to do, I just don’t feel like doing them right now.”
She paused and appeared to be thinking…
“It’s very unusual.” She continued expressing what she was feeling.
“I’m just going to go to bed again. Karen, just save my food for later; I just don’t have the appetite to do it..”
Do what? Eat?
Poor Susan. Her body seems to want to catch up with her mind these days. It is a very sad thing to watch.
“Okay Susan. I hope you feel better.” There was nothing else to say, except, “I love you, Susan.”
She turned and looked me in the face as she shuffled her way across the house and toward her bed. "I love you too."

Sing, Pray, Dance!

Susan’s Song:

Susan has spent more time then she would like on our back porch these post-tornado days, as we have hammered and painted our way back to 'normal'. Team work has been all the rage! Together we have tried to keep Susan happy and cheerful while we work and she waits. She has participated in this whole project by: dancing, working, eating, drinking, talking, trimming flowers and even singing. Basically, anything to keep her from going back to bed.

Ted has made several of his almost famous construction site guitars! They have been grabbed spontaneously throughout our days to keep up the cheery spirit and to keep Susan alert! She is trying to play along. This week, she held the guitar as if it were real and began singing a melody that was part real and mostly made up. I was so impressed by the tale her lyrics might portray, that I grabbed a construction pencil and began dictating as she sang. Here is how it went...

“Love is a many splendid thing...No matter what happens...love is still a many splendid thing...hello young lover, whoever you are... I love you...I cannot find you anymore...You cannot change your mind... I am yours and you are mine... Forever...Love is a many splendid thing…”

(FYI: Susan finds it hard to remember that her husband passed away in 2004.)



Susan’s Prayer:
Part of the reason Susan likes to pray at meals is because she is in a hurry. Waiting for the family to be seated and gathered together is not toleable to her. Without warning, she just cuts in with a loud voice before the rest of us are fully at the table. But one day this week her prayer seemed sweet and sincere as she blessed our lunch.

“Bless Karen who gave me this food. Thank you, Lord, for her. She is a nice lady. I thank you for You too. And bless me, Lord. In the name of the Father, the Son, and the Holy Spirit. Amen.” She signed the cross on her head and chest as she ended her prayer and began eating. I looked on with a smile. “Thank you Lord, for Susan.” I have learned to be grateful for her being here. God is good- all the time.

Susan's Dance:

Another Night on the Prairie

(Note: Susan has Sundowners. Basically, she is more confused and irritable in the evenings. Really, it can hit her anytime after noon and on overcast days. Apparently this syndrome is common among Alzheimers sufferers. Even after a fairly normal morning, any afternoon can turn into total chaos. Here is an example of an afternoon with Susan.)

"I’m gonna go now, Karen.” Susan informs me as she velcro's her sneakers. “Where do you think you are going, Susan?” I ask to be courteous. “I’m gonna go home now so I can go to bed.” I know what to say next; I have it memorized. I also know it doesn’t work, but I start in: “You know you live here in this house with Jeff and me now. Your room is right there- through the doors and to the left. If you are tired you can go ahead and lie down.”

“I know, Karen,” she starts. I don’t understand why she always says that. She says she knows, but she doesn’t know. If she knew, she would quit trying to go somewhere else. She says it as though she is comforting me when I am hurt! “I know Karen, it will be okay!” Maybe she sensed that the pitch changed in my voice when she started getting ready to go ‘home’ AGAIN!

She smoothly adds, “I just need to get home. I’ll come back in the morning. Could you give me a ride? It isn’t far.” My brain reminds me what the ‘professionals’ say- play along; my gut tells me not to say another word! My compassion takes over, “Susan, you have no other home. There is no place to go. You have lived here in Jeff’s home for two years now!” Her voice portraits that she pities me for being so ridiculous, “No Karen, I have my home. My daddy and mommy are there. They will worry if I don’t come home.” “Susan, your parents are no longer there, that is why you live with Jeff and me. You are seventy-four now. Remember when Inang lived with you and Dad? She didn’t go back to the Philippines anymore; you took care of her, remember?” “Yes Karen. But I do have a home. I need to go there. I have brothers and sisters. My father is going to be mad since he prepared the house for me!” My mind wanders as her mouth rattles on with details…I wonder is she reminiscing or preminiscing? I think about the Father above preparing a home for Susan and I wonder which father she is really speaking of.

(Later that evening)
Hours pass and persistent Susan is now yelling at me through the grotto doors. Her voice never seems to weaken. “Karen! Come on; open the door; I’ve got to see Mommy! She needs me real bad; she is sick and I will probably take her to the hospital!” Suddenly her voice hardens, “Karen! I know you are there and I know you hear me! That is not nice! Now open the door! Come on! Open the door!”

She has always been a stubborn woman, but her persistence reminds me of why protecting her is so important. Without a doubt, if she were not safely secured behind the grotto doors tonight, as sure as I am telling this, she would be walking down the street as darkness rolled across the sky…just walking… and walking… 'home’. I know because she has done it over and over. So far I have always been close behind and my hope is that we will always keep her safe- safe from herself and her own confusion.

(The last few photos are representative of Susan's confusion. On that particular May afternoon she was attempting to find her way home with a few treasured belongings in her hands. She stood by the country road as if she were waiting for a city bus. When none came to escort her to Florida, I finally convinced her to come back inside.)

Great Escapes

Another silver alert was issued last week in Oklahoma. Seventy-one year old John Santos walked right out of his home, locked the front door and walked down the sidewalk. He was not seen or heard from for six days. His concerned family says he is friendly and can have a conversation with anyone. Mr Santos is in the early stages of Alzheimers.

The news reports that his family will now consider a monitoring device. I wonder if I should consider one for Susan as well. It seems that I watch over her like a mother hen, but once in an unexpected while Susan escapes all eyes and ears and even all logic. She gets out! In fact, she proved that again to us last week.

We have had houseguests for several weeks. Ted (Jeff’s best friend) and his lovely wife Megan arrived here about a week after the May 10th tornado (to help us rebuild). We appreciate our good friends and are thankful for this time together. Both of them are especially patient and helpful with Susan since they care for Ted’s father, who suffers the same.

Back to Susan’s great escape: One night when Ted got up to use the bathroom, he thought he heard Jeff stirring around in the kitchen. He knew it couldn’t be Susan because she was locked behind the grotto door in the same hall with him and Megan. Every time they come and go from their guest room on the east side of the house, they are careful to lock and relock the grotto door. He knew it was locked.

Since Jeff was apparently also unable to sleep, Ted called out for him, “Hey Jeff!” Jeff did not answer. Instead, (and much to Ted’s surprise) Susan appeared on the other side of the grotto door! “Susan! What are you doing out there?” he questioned, almost not believing his eyes. “Well, I am locked out and I cannot get back in!” Susan whispered. Ted’s eyes went immediately to the lock, which was now broken in half! “You broke the lock, Susan!" Indeed she had broken the lock.And after doing so, she closed the door and put the lock back in place, making it look as though it were still locked!

Susan is persistent. She is not intimidated by locked doors; oh no, not her! In fact, if she wiggles jiggles and finagles long enough, anything can happen! In Susan’s hand she held the broken piece to the lock alongside a white hinge to something totally unrelated to the grotto door; it was the size that might be off of a cabinet door. But I have searched cabinets, furniture, and entry doors for a missing hinge as if I were looking to replace a lost puzzle piece. But so far, the home of the mysterious hinge is just Susan’s secret!

This story makes us all laugh when we talk about it around here. But the scary part is not the fact that Susan had rummaged through the kitchen to her hearts delight, it is the fact that she had tried to get out the front door! It is almost impossible to fully protect her, no matter how hard we work at it. I like knowing that God has his eye on her even when we cannot.

Well, our grotto door is temporarily strung with a bicycle lock. As for Mr. Santos, he has been found alive and well. I saw him interviewed on the news last night. He said he was looking for that hamburger joint! He even stated that he will look again once things settle down. He said that he just gets confused sometimes but eventually his brain puts it together and he remembers. The Alzheimer’s Association was getting him an identification bracelet to wear. Hmmmm. Sounds like a good idea.

Changing Views

I love a window seat. From my small airplane seat, I can look down at the local geography... then at the clouds... and eventually the upper atmosphere of my world. It is a whole new perspective from up there. My life and town are just a small part of the big picture. Even the massiveness of Mt. Fuji was dwarfed in significance as (years ago) we flew overhead. Although, from the ground it dominates the Japanese skyline and demands respect as it rises magnificently in the eastern sky.

Today I am not escaping on an airplane; no, I am not headed to a grand destination. But if I were, I am sure that as I left the Will Roger’s Airport (directly west of my Oklahoma neighborhood), I would observe a scattered path of destruction making its way across the landscape. A line of downed trees and dangling houses would guide the eye through the midst of the destruction, where people (like ants) could be seen working diligently to clean up and rebuild.

In the middle of it all, I would look down at my own partially repaired house with its new roof and half-finished siding. I would see my family still outside cleaning debris, installing new siding and rebuilding our home and lives. We seem to be doing that far too often these days. There would be me, alone in the middle of the silent aftermath of tornado alley, working peacefully on my own little piece of this bigger world. Me, nearly silent while I am living life as it comes my way, taking care to take care: of things, of people and of myself.

What would not be seen from the window view would be Susan.
No, Susan is not out and about much these post-tornado days. She has been especially confused since the twister hit our community over three weeks ago. Who could blame her? She never did like change! Yet, change has been inescapable these past twenty-five days. Even Susan’s view from her chair at the kitchen table where she sits and looks out at the weather, her flowers and the trees – is unrecognizable. Nothing looks the same as it did one hour before the tornado hit!

Susan’s little world was visually jolted in a whirlwind! She reminds me of Dorothy in The Wizard of Oz! I've half expected her to announce, “Toto, we’re not in Kansas anymore!” From the time she walked out of her shelter on May tenth, nothing has looked like she struggled to remembered it! Markers that once told her she was almost home are no longer there to guide her way. A drive around the block is filled with missing houses(demolitioned) and others that are crippled or patched; once familiar roads are now edged with debris piles and tree branches. Trees that once pointed the way home are now fallen and broken.

Susan keeps asking us to take her home; she is tired
and needs to rest in a familiar place. She says that she appreciates our hospitality and that she will come back to visit tomorrow, but for today (each day) she needs to get home and take care of pressing business: her baby needs to be fed, her children need to eat, her husband will wonder where she is or her house needs her attention. I think about telling her to follow the yellow brick road- just follow the yellow brick……..

She finds the fact that she has lived here for nearly two years incomprehensible. No way could she have lived in this unfamiliar place so long. A few times I have convinced her to sit outside while we work on rebuilding projects, but she wiggles with discomfort and always manipulates her way back inside. It is as though she is afraid of finding the witch’s feet protruding from underneath our house! :) Her bedroom is her comfort zone. It has not changed.

Since there is no wizard here, I suppose it is up to me to help Susan rediscover a new normal- that is, after I find it myself! Things should settle down soon and this family will resume living; then again, I guess that is really what we are doing- taking life as it comes and flexing to deal with change. It’s all-good in the end. Really it is.

After the Storm

(This is part two of our tornado story. I recommend that you first read my last entry, Tornado!)


There, in the darkness of our small bathroom in the middle of our house, silence was golden! We hoped that silence meant the tornados were gone; but without power we had no way of getting vital information. We crept out of the bathroom and through the hall; it was immediately evident that something major had happened! Inside, our walls were in tact and things were in place; we could hardly see out the windows of our house because they were steamed up and covered with small bits of debris.

Closer to the windows, it was obvious that the green (foliage) was lower then it was supposed to be. In fact, nothing seemed to be as it should be. I couldn’t see what was wrong exactly, that is, until we opened the doors! Shock was the only word for what we saw! Shock, because we were not expecting it.


The front yard was scattered with black and white debris, which eventually visualized in our
brains as our roof shingles and vinyl siding. Trees were down everywhere and tree branches intertwined with resemblances of our porch furniture and lawn ornaments. Our white picket fence and arbor were leaning to the east and decorated with smashes of our heavy wood Adirondack chairs, while little angels, more roof tiles and white siding lay torn around the fence posts.

Out back, my once shade-laden coffee patio and terraced landscaped living areas were now hidden under a blanket of fallen trees. On the southeast corner of the hill,
rising from a newly unearthed pile of dirt, was a large tree trunk sprawling with fingerlike roots in the air. Beneath the uprooted tree, rose the feet of my little boy and girl statues, who had the unfortunate fate of being buried head first in the dirt. The aroma from my herb garden smelled fresh and yummy, as if parts of it were freshly picked.


After a quick check on our neighbors and another round
of warning sirens, we wandered around lost in our own yard. Eventually, Jeff began checking the damage to the structure and integrity of the house, while I assessed the fallen trees and ruins of my outdoor paradise. One look was enough for Susan; she wanted none of it! She said a few choice words and went directly back inside to sit in her rocking chair. Helicopters began immediately flying overhead and emergency vehicles appeared shortly thereafter. Cars driven by family and friends of those living in the ‘tornado zone’ began appearing, followed shortly by insurance adjusters, contractors and shysters.

It seems that what makes this type of thing so
difficult at first is the suddenness of it all. You close a door and open it moments later to a changed worldI felt like we were Peter, Susan and Lucy from The Chronicles of Narnia. They had hidden inside a dark wardrobe and found a secret door in the back. Passing through it led them into Narnia, a new world of odd and exciting things. Although this new view of mine was not awesome or wonderful and I saw no talking animals, it was however, filled with unusual things to discover. My mind hardly had time to switch gear, so the first hour or more was simply spent wondering around in disbelief assessing the damage.


Eventually our minds dealt with the shock, making room for reality. Jeff began making what would turn into days of calls to insurance companies, businesses, contractors and suppliers. About two hours after the tornado had hit, police in cars appeared with bullhorns checking on people. “Is everyone there okay?” they shouted. We gave the thumbs up. We felt blessed- we were alive! “I am putting yellow tape on your mailbox. Please don’t remove it.” He echoed from his bullhorn. Then, off to the next house he went, until everyone on our country cul-de-sac was accounted for.

I woke up the morning after the storm- reorienting my brain... “Your house was hit by a tornado, Karen! There is chaos outside!” I found it hard to believe all over again. This post-tornado week has been filled with power company trucks trying to restore electricity, tree trimmers trimming along the power lines, police cars guarding the neighborhoods from those who don’t belong, strangers wanting jobs and handing out business cards,and contractors on roofs and ladders. The sound of generators running has become familiar all over again. It doesn't seem so long ago that the ice storm took out our power and running water for ten days. We are building on what we learned back then. Oh, and those oil lamp I was filling the day of the tornado have been a great blessing.

As you can imagine, the chaos of it all has caused Susan to be more confused then ever. In fact, the talk everywhere of tornados has caused her to wonder when it is expected. She has no memory that she already survived the real thing (an F4), although she definitely seems more scared of the word ‘tornado’. I believe the trauma made her worse; she isn’t handling it well. Her favorite things to do this week are sleeping and praying.

One week to the day after the tornado hit, volunteers from Jeff’s work showed up to help out! They spent an afternoon with chainsaws and gloves removing most of the downed trees! Again, we were blessed and extremely grateful. There is no doubt that God has walked with us in the midst of the storm! And guess what? At the end of the storm, there was a rainbow! It stretched its spectrum of color in the distant sky so wide that it seemed to encompass our lives in the promise it reflected. Thank you, thank you, Lord of All!