The Maze

The Maze

This Christmas holiday has been unique for me. Christmas has always been a holiday of joy for me; of sharing, giving, loving. This Christmas I have had difficulty getting beyond my own sadness. I have been forced to face the reality of the changes in my life. I have battled depression, anxiety, grief, and an incredible loneliness that I have never experienced before in my lifetime.

I have always thought of myself as non-materialistic. I am here to confess that I after much soul searching and many many shed tears this holiday that I am a
hypocrite. Although I know I made the right choice in coming home to Kansas, I feel I have failed in many ways to provide for my son. The money is gone and has been for some time, there has been no relief in terms of finding employment, and I find myself shopping at Goodwill for my children for the holidays. And for so many of us, it is all we can do.
For me, it has been an experience that has left me humbled. The tears are not only for myself and my family, but for so many that have nothing to put under the tree. It is something that has not only made me aware. It has made it a reality. I now understand, and it hurts deeply.

My faith remains in God, but for the life of me, I do not know what lessons I am supposed to be learning. What direction should I go? What direction CAN I go? How can I make a difference in this world? Not just in name but in reality.

With the reality that my precious baby grandson will soon be entering this world, I ask God once more about my purpose in life. Are we born on this earth to make a difference? Is there a path we are to follow, or do we make our own way? My religious past has often left me questioning what is to come in the beyond:  Did we exist before? Did we come into this
physical body existing in another dimension? Do we just vanish? Are we reborn each day?  I realize even more that the real question to be asked is what is the purpose for my human existence? To learn? To grow?

I am sure that what I am experiencing is not specific to just me.

So many of us are facing the realities of changes in our lives. I am facing a new journey.It is time for me to heal and to start a new life.  It's a scary path and I am not sure which direction to go. I do know that I have to make a difference. I have to reach out and share with others, so they know that they are not alone and that others have been down this path and have survived. I am a survivor. It is now time to thrive.

Without a doubt, the lessons I have learned recently is the value of friends and family. I want to thank all of you for being here for me. Your support, your hugs, and your prayers have helped me to cling to hope.My greatest joy is the realization of the gifts surrounding me. Love is the most powerful energy in the universe. Music is love. The true gifts in life come from loving, and I do, without a doubt, love you all with all my heart.

Checks and balances

Fifteen hundred years ago everybody knew the Earth was the center of the universe. Five hundred years ago, everybody knew the Earth was flat, and fifteen minutes ago, you knew that humans were alone on this planet. Imagine what you'll know tomorrow.(Kay, Men in Black, 1997.)

Checks and Balances

sophrosyne. (n.) a healthy state of mind, characterized by self-control, moderation, and a deep awareness of one's true self, and resulting in true happiness. 

It's always difficult for me when I leave Bill at the nursing home. "I can't be here," he tells me with tears streaming down his eyes. I kiss his forehead. He looks at his room.  "It's dark. I can't be in the dark." I turn on his lights and help him recognize his things in his room. While I know he has owned these things for many years, it is foreign to him. Every time we leave and return, it is a new experience for him. I think to myself that it must be a frightening world for him. And I get to leave and go home. That's a tough thing to deal with. It's the reality I see. It's my sweet, sad, and scared husband. It's the daddy of my baby boy. And it leads to such a loss in my heart. 

When it comes to emotions, I am an amateur. If emotions were a computer software program, mine would fall under the category of corrupted. I would simply uninstall and re-install the program.  I guess in a sense that is exactly what the brain does, is crash like a computer, go into recovery, and reboot. I think that is why we forget. Forget the truths. 

The truth is, the Bill I am experiencing today is most like the Bill I fell in love with. We laugh, we cry, we live by the moment. He is sweet, often scared, and grieving the loss of what he refers to as a "normal" life. That's tough to leave. And it's tough to go home alone and face the loss of finances, the fear of tomorrow, the humility of having to rely on my mother, my brother, to help me in crisis while I try to heal and to find new purpose in my life; to help find a way to make a living. Bill is not the only one living with Alzheimer's. We are, too. I am, as well as Bill, our son Jack, my family, even my extended friends. I like to think I am in control, but I cannot control the reality of life. 

A couple of weeks ago, I was searching for paperwork for our attorney. I was given a reality check. I was forced to go back through our history, back through the devastating actions that lead to Bill's placement in the nursing home. For forty-five days I re-read court orders, DA threats, rehashed the attorney fees looking for one simple piece of paper. I cried. I threw things. I cursed. I cried some more. And then, out of the blue, this picture dropped out of my files. Still in denial, I noticed a small piece of plastic ID had fallen. 

There he was. It was Bill. It was the Bill that decided he no longer needed his medications. It was the Bill that refused to stop driving, found his hidden keys, and totaled his truck by hitting a couple driving down the highway.  It was the Bill that hated his life, hated our home, hated us. He saw himself in a prison while building a prison around our lives. This Bill was the Bill who had to be moved to a nursing home.  

Somehow, this gave me peace, . I suddenly realized that my attempt to try to control everything has taken the joy out of my life.  Those thoughts, especially the thoughts that blanket me when I leave or those that crowd my mind at night when I'm alone. One should never be left alone at night with their thoughts. Thoughts are like tiny little gremlins who come out and eat you alive until daylight rises the next morning. Those thoughts were only partial memories, and important to keep alive, but only parts of our real life. 

Thoughts swirl around as I try to find some commonality to help piece together feelings of  grief, sadness, anger, hopelessness, even, yes, even the thought of maybe there would be peace if it would just all end... these thoughts are like a sinking ship. 

I realize more and more every day that Bill is not the only one living with Alzheimer's. I am too. And I believe in doing more than surviving. I am not going to give in to this moment of crisis. I will rebuild, heal, and help others to survive. I will share peace, love, truth, and harmony because I believe that life is so much better with these things. I will share self-growth, happiness, beauty, and life because these things are in me and are me. I choose to live. Not just survive.

 "Grief is like the ocean; it comes on waves ebbing and flowing. Sometimes the water is calm, and sometimes it is overwhelming. All we can do is learn to swim." Vicki Harrison.

"One day someone is going to hug you so tight that all of your broken pieces will stick back together." Anonymous.

The MRI

“The most beautiful thing we can experience is the mysterious. It is the source of all true art and all science. He to whom this emotion is a stranger, who can no longer pause to wonder and stand rapt in awe, is as good as dead: his eyes are closed.”   --- Albert Einstein

"The heart wants what the heart wants."  --- Woody Allen

My life with Bill has lead me down more than a few roller coasters. Just when I begin to think I have a grip on things I find myself leaping off the next cliff, looking for answers, questioning my actions and decisions, and forgetting that in real life there are things that happen that are out of my control. If not for laughter, I would lose my mind. 

The Bill I am seeing the last couple of weeks is withdrawn and has drifted off perhaps in thoughts, perhaps in memories, or perhaps he has just drifted off in the clouds. Where do we go when we are "there?" The changes in routine, in eating, in skills, in speech, lethargy, flat affect, and signs that he is having pain trigger the nursing staff to investigate, so off to the Dr.'s office we go. Or as Bill puts it, "going to see the German." I have to tell you, not all of Bill's "nicknames" are quite this polite.

The Doctor, a scholarly healer with years of experience marked across his face, begins to engage Bill in conversation. "Professor?" he begins. Bill sits in his chair oblivious that the conversation is being directed at him. "Professor?" the doctor repeats. Bill's eyes remain fixed in space. "Honey," I turned towards Bill, using my finger to slowly draw his eyes to the physician. The doctor began asking Bill questions. Some he was able to answer with one or two words. Other times the words were jumbled, not related at all to inquiries. 

"I see many changes," the Doctor notes. We talk about past health history and my original concerns that his melanoma, treated five years ago, might have internalized and metastasized. I see many changes, he indicates, and a cat scan is ordered to rule out other causes. I am elated that further steps are to be taken. And I am alarmed. The time before last ... the time before the last time... Oh, dear God, the time before the last time he ran. And the last time we did complete the test, but only after he was given 40 milligrams of Valium and he was accompanied by a 400 pound sumo-wrestler type attendant that I sweetly referred to as Bill's private bouncer.  

So here I was again, sleep deprived and  anxious from flashbacks and night terrors and the horror that I had slept through my alarm. I ran from my car, bursting through the hospital doors, panicked that he would look for me to help him, wonder where I was, filled with fear. Would he fight once he realized what was expected of him? Would he run? Relief flooded me and tears began to roll when Michelle, his social worker, he was calm when the nurse took him by the hand and led him to the MRI. Silently I sat, salty droplets falling from my bowed head. Just about the time I feel like I have accomplished a balance in my life, I find myself baffled with a new phase of grief. Guilt? Anger? Questioning myself, our past, if I have done all I could possibly do... and wishing it would just be over. There it is. It feels like the greatest sin of all, wishing it would just be over. 

Just be over... what would that mean?


Bill, I am so sorry. I got absorbed in a stage of grief. Sometimes it is difficult for me to break out of my world and imagine more out there. I am starting to pull it back together- identifying the source of the sadness is a difficult process. I am trying so hard to make it through this. It's very difficult to watch the father of my only child go through such hell.  We've been married for 26 years this week. I loved you through most of those twenty six years. For twenty six years I uprooted myself, uprooted our son, to support you, to serve you as wife til death do us part. 

Is this my nightmare or is it yours, dear?

“I DON'T CARE!" Harry yelled at them, snatching up a lunascope and throwing it into the fireplace. "I'VE HAD ENOUGH, I'VE SEEN ENOUGH, I WANT OUT, I WANT IT TO END, I DON'T CARE ANYMORE!"
"You do care," said Dumbledore. He had not flinched or made a single move to stop Harry demolishing his office. His expression was calm, almost detached. "You care so much you feel as though you will bleed to death with the pain of it.”
― J.K. Rowling, Harry Potter and the Order of the Phoenix

Long silences
blank staring eyes
moments of lashing out in anger

Lost in a sea of jumbled memories
  words floating to the top of the sea foam as he tries to tell me something from the heart. His memories are     shifting and resurfacing. His face grimaces as he tries to tell me... something...

Day after day he dies a little more.

I don't know how I am supposed to feel. I have jumped off a cliff and have no where to land. I remember the day when I had to decide on a daily basis whether or not to continue to love you. It is so much easier to be angry for your transgressions in our marriage. Now I reflect back and wonder if it was the disease. Dare I hope it wasn't my flaws you were seeking to escape from. Were you running for your life?

It's almost like the days of the past were just a vivid waking dream. The only question I have is is this your nightmare or is it mine? There's a black hole centered in my soul where time slips simply into a blur.

We have rudiments of reverence for the human body, but we consider as nothing the rape of the human mind. ~Eric Hoffer

“A girl calls and asks, "Does it hurt very much to die?"
"Well, sweetheart," I tell her, "yes, but it hurts a lot more to keep living.”
― Chuck Palahniuk, Survivor

Photos thanks to morgueFile free photos.

Monday Night Bingo

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MONDAY NIGHT BINGO AT THE NURSING HOME....

You haven't lived until you've gone to Monday Night Bingo at the nursing home. It's a transformation of meek, mild mannered elderly and young unfortunates who are no longer able to care for themselves independently. Suddenly, someone announces the activity for tonight is Bingo and something magical happens. There is excitement in the air. 

It started at supper time. "Bingo tonight" someone shouted to his hard of hearing neighbor. "Singing? Who's singing?" asked someone to the left. Two table mates look at each other, rolling their eyes. She can't hear a thing," they mouth to each other. "She asked if he's single,"  another responds. 

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Bill and I excuse ourselves from the table to go outside for some fresh air. "Where are YOU going??" I hear. "We have to play bingo." Slowly, we sat back down. This was serious stuff.  

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The bingo cards are chosen, the chips are distributed, and it begins. 

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This wonderful transformation 

slowly converts the helpless 
into the helping...

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and a simple activity 

turns into a moment  

of friendship 

and communion 

with each other, 

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and a simple reminder that 
they are Somebody. 

Somebody important. 

Somebody with confidence. 

 A winner. 

retrieved from the web

It doesn't matter that everybody wins. Twice.
I (the residents) won. And so did my neighbor. 

A note from May 2010... how quickly our lives changed

Reflecting on the past-
I found this post today in an old blog. I am so glad God shelters us from predicting the future.

Professor Bill McLaurine, May 2010

Professor Bill McLaurine,, July 2013



SATURDAY, DECEMBER 18, 2010

Whew!
We did it. Bill made it through the MRI today. Tough tough for someone who is very claustrophobic, has a big history of being suspicious, and has dementia on top of that. The first time we tried (over a year ago) he ran out of the hospital. There I am following him in a dead run (I am 50 and not in shape by any means at all; not a pretty sight) going, "hey, hey, Bill, stop, wait honey..." He met me at the car. That was the last time he agreed to be tested, until now.



On the way to the doctors, Bill was talking and grieving about not reaching all his goals and dreams, and was laughing and reliving some old times. He looks at me summarizing his philosophy by announcing that we are loving life and living it. And that's that no matter how the tests come out. We know it's not a tumor, we know we have some time, so Bill wants his Goldwing fixed. Wow. I feel like I have permission to relax emotionally a little while.



Now, the actual process was a hoot. I had explained to Bill's neurologist, Dr. Roth, about the last excursion of the MRI attempt and Bill's sudden ability to leap over tall buildings in a single bound. Dr. Roth generously prescribes three doses of 10 mil Valium each. He tells me to give the first on 3 hours before the appt., the next one in an hour or so. If he's still showing signs of anxiety an hour before the appt, give him the third dose and they will give him a place to sleep it off. So I give the first dose. His response: I'm driving. Sorry, over my dead body, babe. Someone has to raise Jack and pee the dog. I win. For one hour he of course becomes an expert in back driving. I look at my watch. Time for pill 2. Hallelujah, thank you Lord. About twenty minutes later the talking does slow down. We now limit the conversation only to back driving. We get closer, the adrenalin rises, so down goes the third dose. He not only walks into the appointment,He walks into the MRI room, and totally cooperates. As soon as the test was over, he was definitely stoned out of his gourd, but he is in a jolly and ornery, mood. He gave every person in the office a tough time and words of wisdom, did the test. Bill pops out of the tube chatting away. The doctor is stunned Bill is still talking and walking and asks Bill, "Have you ever taken that much Valium before, Bill?" Bill response is, "Well, not legally, doc."Doctor's cracking up, nurses are roaring with laughter, the blood tech comes out for him and say, "Come on, sassy frass, I'm done dulling the needle." We go have lunch,he starts flirting with the waitress until I smacked him in the head and reminded him he is an old man and married," he spends an hour recruiting our waitress to go back to College, learn a second language (Spanish), and she's fired up and ready to return when we're done laughing and eating.



So, I set a few goals, wrote down a to list, and am making a promise to add Walnuts, popcorn, and yogurt (like one a day) to help control my blood sugar levels. The promise includes being consistant in my daily exercise regime, thirty minutes a day.I know we face some very difficult periods, but right now, at this very moment, I feel hope today. It feels good.

.
POSTED BY LYN MCLAURINE May 10, 2013 AT 1:12 PM

Life

photo courtesy of morguefile.com/archive

"When you think things are bad,

when you feel sour and blue, 

when you start to get mad...

you should do what I do...

Just tell yourself, Duckie, 

you're really quite lucky! 

Some people are much more...

oh, ever so much more...

oh, muchly much-much more

unlucky than you!" - Dr. Seuss

I sat last night at a dining room table, centered between Bill and his sweet co-resident, Betty. Betty, a woman I am guessing in her mid 70's although the years had not been kind to her, sat on my left and Bill sat on my right. Both share in advanced onset of Alzheimer's despite the years differentiating between the two.

I pick up Bill's fork and begin introducing him to his supper. He is resistant to eating and drinking now, for the past few weeks.

 "Oh, no, no," he says. He looks at me suspiciously saying, "I can't eat this." He looked at his food as if it were the cause of his disorientation. I turned to Betty, who smiles momentarily and asks, "What's going on?" I gently lift her spoon to her mouth. She opens widely, accepting the food. I turned to Bill, noting how delicious this food looks. "Just take a little bite, honey." He frowns, but allows a spoon full of salad to enter his mouth. "Delicious! Look at this! This is a southern meal just like your mama would make you! Scalloped potatoes with ham, fried apples, yum!"

He looks at his plate and smiles. I turn to Betty. She has all ready forgotten what we are here to do. "What's going on?" she asks me. "We are here to enjoy this wonderful meal, I smile." I scoop a bit of her food, and she graciously opens and receives. This scenario continues through out the meal as I coax and encourage the two to eat. I cannot help but laugh and smile as I try to carry on conversation between the two, Betty asking me continuously "what's going on" and Bill asking about his dog and his son.

The two laugh as we talk, and others around the room join in with laughter and comments. Tonight we found success for both as we finalized their meals and celebrated fluid intake. I move momentarily from the table and return to help the two finish. Betty is seeing me again for the very first time. "Well, honey! How are you?" Blessed, Betty. Blessed. 

10 Requests from an Alzheimer's Patient

Please be patient with me.

I am the helpless victim of a brain disease.

Talk to me.

Even though I cannot always answer.

Be kind to me.

Each day of my life is a desperate struggle.

Consider my feelings.

They are still very much alive within me.

Treat me with dignity and respect.

As I would have gladly treated you.

Remember my past.

For I was once a healthy vibrant person.

Remember my present.

For I am still living.

Remember my future.

Though it may seem bleak to you.

Pray for me.

For I am a person who lingers in the mists of time and eternity.

Love me.

And the gifts of love you give will be a blessing forever.....

~Anonymous

In memory of my sweet cousin and my number one encouragement to continue to put into words the things in my life that can help others. I will miss you, Patsy (Patricia Keller Nelson) I will keep writing.