I Want To Be Like Her

Famous Faces of Alzheimer's 2014 REVISED 2016

​​​​​​​​​​​​​​​​​​​​​​Faith Failures 

Written by Toni Wombaker, Spring 2012

Faith. Trust. Unconditional love. Patience. More trust. More faith. These are the things I must focus on daily, sometimes hourly, or minute by minute. So, when our pastor at our church preached on faith, in my heart stirred a lot of emotions.

“Faith failures will happen,” Pastor John’s voice lingered and echoed in my mind. I had never thought of what I was going through as a “faith failure”. I had never even heard that term, but I knew for sure that I had felt it. I knew full-well what a faith failure felt like. I had many of them over the past few years and to put a term with what had been happening on the inside of me felt freeing. I felt like I could see the whole picture again.​

​ It was almost like the day I was told that my mom had Alzheimer’s Disease. I remember, finally, understanding. It was as if I had been trying to complete an immense jigsaw puzzle. There were so many small, intricate pieces. Every piece with a different shape and with a kaleidoscope of colors. It had been extremely frustrating, tiresome, and stressful knowing something wasn’t quite right with my mom, but I couldn’t seem to get the pieces to fit . . . the answers I needed. Then one day, two years after I first took her to a doctor, my mom was diagnosed with Alzheimer’s Disease. It was as if I had finally placed the last piece of the puzzle and I could see the whole picture. That day felt freeing also, terrifying, but freeing.

​This day was very much like that one as the pastor spoke of “faith failures” and of trusting God fully. I could finally put words to what I had been going through and I found comfort in that. After my mom’s diagnosis and I knew what was wrong with her, my frustrations toward her were replaced with understanding why she was doing the things she was doing. My anger at her was replaced with compassion because I finally understood she couldn‘t help her actions and the decisions she had made. My impatience was replaced with patience. My uncertainty was replaced with grief and more uncertainty. My fears were replaced with even more fears. The fear of the unknown was replaced with the fears of this horrible disease. Even with the negatives though, not having been told she was fine or just depressed again when I knew better than anyone that something was wrong, was huge, in and of itself. My fears of the worst were confirmed, but at least I knew I just wasn’t imagining all the symptoms I was witnessing and I knew what we were facing.

 Then immediately following came the grief and the beginnings of my series of faith failures. Often I caught myself trying to understand why God would allow something such as Alzheimer’s to exist or for that matter any horrible disease or situation. Why would God want His creation to experience pain, loss, suffering, and tragedy? Why? Why would He allow a person to live a life full of memories and to be actively using His God-given talents and then slowly over time strip those away? Strip away layer by layer of talents, memories, abilities, character, and personality? Slowly, one layer at a time while loved ones watch and can do nothing. Why would God allow that?

​These questions swirled through my mind on a daily basis. I have gone through the entire grieving process. I have already grieved the loss of the mom I once knew. That seems strange even to me, because my mom is still alive, but my Alzheimer’s mom is a very simple shell of the incredibly talented and amazing person my mom once was, that mom is gone. And I have grieved that loss fully. This doesn’t mean I love my mom any less it is just a different love. We have different roles now and different lives now. Faith failures? You bet, I talk with God daily hashing this all out, questioning Him. Anger? Yep, it is hard not to be angry sometimes. However, God has allowed me to feel all the feelings and express them as I need. He has also allowed me to see blessings along the way and fill my heart with hopes of more blessings to come as we travel down this crazy path of Alzheimer’s. So, faith failures will come and go, and God will continue to love me and carry me through.

 I know this because God has spoken to me in many ways and addressed these faith failures. Through Pastor John, through song, in my dreams, through the incredible bond and deeper bond this has created between my husband and I, through the support of my four children and other family and friends, in the silence of a room that I sit in with my mom, in her eyes that still sparkle, in her smile, in her child-like excitement as we pass the orange garage door each day or when an airplane is overhead or there is a full moon, in my heart, and definitely in my soul. I have heard God loud and clear. There are lessons to be gained in every situation here on Earth and to soak those lessons in and let them help you grow and change and most importantly become closer to Him. Life on Earth is just a glimpse, a flash in time compared to life with Him in eternity and once there things such as Alzheimer’s won’t exist, but the lessons He sent through such tragic events will follow into eternity.

​When I could see the whole picture of what it means to believe in, trust, and have faith in God’s plan then it made my struggles with the why not as important. Why doesn’t exist if you just trust, fully trust, that God does have a plan for you and just go with it no matter what that plan entails. Whether the plan is understood or not it is God‘s plan and really that is what matters. This doesn’t mean the journey will be easy by any means, but the stronger the faith and the fewer faith failures I allow to take place the closer I am to God and His plan and the stronger I feel. We must just have faith that everything happens for a purpose and a reason. Even Alzheimer’s.

  
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The Day Autism Came

​Written in 1999 by Kristine Perchetti

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I don’t remember the exact day Autism moved in the house. He came in bits and pieces, realized then faded away. I had read about him, even studied a bit, but not one piece of knowledgeable material accurately described Autism. Not the Autism that took up residence at our house. For I do remember the moment I understood what he was all about. I had fallen asleep when Autism pounced on my chest like a cat. I jumped up, adrenaline flowing, my breath coming in short, shallow breaths, heart pounding so hard my body moved with each beat. Trying to gather my wits and focus my eyes I came face to face with Autism. 1000 faces and 1000 forms he knocked me to my knees with the realization. “Please no” I cried “how can this be, how can this be”. Love tried to soothe me as Autism insisted on repeating this torture all through the night. “I have moved mountains and created miracles” Love would whisper “I can overcome any obstacle”, and I believed, I believed.

But, Autism was relentless in the weeks that followed; he haunted my every thought, my every action. He was as big as the world or as small as a mouse but he was always there. He obsessed me. He controlled my entire mind until I ran red lights and forgot names. And by the end of that first horrible month even Love could see that although Autism had no power over her, she lacked the same against him.

Autism would wake me at all hours of the morning, laughing hysterically, hitting then crying for no reason. Exhausted I walked from room to room, I mind tripped and fell right into Hopelessness and Despair. “They’re with me” Autism explained, “eventually they all come to live wherever I am”. The best of friends, Hopelessness and Despair were almost always together. Love had been with me all my life and these two scared her. “Keep them at arms length” she warned “you will melt into them like wax”. And she was so right, for looking in their eyes you saw all their domains, middle eastern women setting themselves on fire, battered wives, abused children, the poor, the hungry, men imprisoned because of their race, starving mothers with babies at their empty breast.

Hopelessness and Despair could be so deceiving, always promising easy ways out. Their looks changing constantly trying to portray what they represented. When they had energy they would invite Anger over. He was one I have always steered away from. He would visit intermittently, squeezing my head so hard the back of my eyes ached. Anger would pound my thighs until I had bruises the size of oranges on my legs. Anger made me afraid. And when Fear showed up it became dangerous. Fear was famous for her little sayings “You can only have true love or true fear,” she would say over and over. When I questioned Love she just mildly stated “special circumstances”. My life became so hectic trying to keep this pack at bay.

Once in a while Hope would show her face. Dressed in an article or new found cure. She would give me hopes, dreams, and goals wrapped up like tiny gifts. She talked incessantly like music and I cherished her visits. But always, as days or months would pass and nothing would calm Autism down, Hopelessness and Despair would return from their absence and start in again. “There is no use in trying” Despair would say. Her scarred wrists waving in front of her face. Hope would whisper words of encouragement in my ear send me little positive thinking books, try to get me to hold on. But she becacouldn'ttsMarleyttsleep oversrcouldn'ttme so small that I even hear her anymore. And when she left, my biggest enemy of all would show up. Regret. Regret could torment like no other ever could. He loved to remind every mother who looked away for one second while her baby drowned, for all drivers who killed their loved ones with one wrong turn, that Regret is the greatest torturer of all. “Let’ would be playing even know his favorite color, right now I bet he would have friends, and they would have -us and want a puppy of his own, of coarse he would promise to feed it which you would end up doing, and you know what? I bet when you put him to bed he would say “Mama I love you all around the world and back" and all those cute things that children who do love their parents say. Sometimes he would talk until I would cry so hard that I hear him either. see” Regret would start out “, he would love trips to toys-’’-ball by now, oh and I bet he would be into those action heroes, what are their names” and he would ramble on and on “what would it be like to go to dinner with your family, or even go to a movie, shame you don’

And life would go on, every time I was punched in the face or scratched so hard blood ran down my neck, Autism would smile and taut me. “For the rest of your life” he’d giggle. Once when Hope was visiting we searched and searched the Internet for information to send Autism away. He excitedly pointed out a sentence in one description; “there you see” he jumped up and down “Autism is pervasive, covering all senses. I am Marley, he doesn't’t have me”

“OH no you don’t” Hope encouraged me to say. “I knew him before you came to our house, I saw behind his eyes. You only survive because of shattered hearts and broken spirits, you make it so hard you force families to give up that’s all. You convinced all the professionals but you’ll never convince me, you will be found out and destroyed”.

“I always win” Autism stated

“Not this time” Hope boldly yelled

“Whatever” Hopelessness added

“Not in this lifetime” Despair cried

“What if we had known sooner” Regret chimed

Brain Robbery

Written by Toni Wombaker

one caregiver's view of Alzheimer's

Summer 2011

My beautiful mother has been a victim of robbery. Not just a “man with a gun, hand them the note, and take all the money” kind of robbery, but a silent, relentless, and horrible robbery. A theft most cannot even imagine, a traumatic ordeal I have a hard time believing, and that on a daily basis I am reminded of and struggle to comprehend.

 Yvonne Jensen, my mother, spent most of her career life working in the field of banking in one form or another.  She started out as a teller with First Western Bank in Tonopah, NV.  She also worked for California Federal and Nevada State Bank in Sparks and Reno, NV.  She worked in management and supervisory positions as her career advanced.  She was a good banker.  One of the things all bankers have to be aware of is the chance of a robbery.  It is one of those things you have to be prepared for but hope never happens.  Well, during all the years my mom was in banking there were a few times her branch had robbery situations. 

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 One time was one of those situations that you just never imagine will happen.  The kind of situation you only see in movies, but this kind of violent bank robbery actually did happen to my mom.  A very vocal, violent, and aggressive bank robber came into her branch with a hand gun demanding money.  He actually held the gun to my mom’s head while screaming at her to give him money or he would blow her f***ing head off.  This robbery was very traumatic for my mom, to say the least.  Luckily the man got what he wanted and left without harming anyone. 

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 For some reason, I will blame it on God, as I sat at a drive-in movie theater late one summer night in 2011, this event kept circulating through my mind.  I had been contemplating all my mom had experienced in her life, not just this traumatic event, but all the trials and joys life had dealt her.  I was particularly perplexed by what she was facing now, and what my part in her life was and will be.  Then suddenly, as I sat there in the dark, I realized my mom was being robbed again.  Right at that very moment as I sat with my family I understood my mom was a victim of a vicious and cruel robbery . . . Violated and robbed again and I just knew I needed to tell her story.  God connected the pieces of the puzzle for me and I felt so strongly that I need to speak out about this theft my mom was and is experiencing.  You see it isn’t a man with a gun robbing her, it is a disease called Alzheimer‘s.

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 What is slowly being stolen from my mom is her memories, her essence.  Think about this, really think about this, what is life? What does life really mean if you don’t have memories?  What would your life be like if you didn’t remember the day your children were born?  Many adults tend to joke as they get older that their birthdays are just another day on the calendar, but what if that were really true?  My mom no longer knows that May 27 is her birthday. 

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 What if you didn’t know what day of the week it is or what month it is ever again?  What if you couldn’t remember how to do something as simple as tying your shoes, writing a sentence, turning on a TV, or using a phone?  I know for all those that haven’t known my mom long it might be hard to believe, but the person my mom is today is a very simple shell of the person I once knew.  She really is nothing like herself.  Each and every day my soul hurts, I feel a sadness like I‘ve never felt before, and a part of me feels hollow.  I have a very hard time looking at my mom, looking into her eyes, because the person I see looks like my mom, smiles like my mom, sounds like my mom, but I am devastated to say, my  Alzheimer’s mom is a very different person than I have ever known my mom to be. 

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 My mom, who was once brilliant with numbers and harped on me to keep my check account balanced, can no longer keep her accounts in line, write a check, tell the time or know what the date is; she can’t add or subtract, or do any other task involving numbers.  Alzheimer’s has stolen her brilliance with numbers.

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 In her living space hang beautiful oil paintings and ceramic paintings.  Any thief would definitely steal them right from the wall, but my mom’s paintings weren’t stolen, her ability and desire to paint is gone though.  Alzheimer’s has taken that.  The amazing talent for painting that she displayed throughout her life is gone.

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 Another amazing talent my mom had that has be stolen is the gift of sewing, quilting, crocheting, and creating textiles.  She was so incredibly talented in this area.  Luckily, I have many items to remember just how talented she was.  There is the most special item she made hanging in the closet, my beautiful wedding dress.  I feel blessed to have my dress and hopefully one or both of my daughters will like to wear it one day.  Then there are the hand made Raggedy Ann and Andy dolls, the swan, Christmas ornaments, other clothing pieces, blankets, and the heirloom quilt she made from the quilt blocks left to her by her grandmother.  This quilt was finished in 2008, luckily, as it was shortly after that Alzheimer’s stole her ability to sew and create. 

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 Like a thief in the night, Alzheimer’s has come quietly and grabbed a hold of the very essence of the person my mom was and stolen her away.  Her memories are slowly being stripped away fading each day, her decision making abilities are long gone, her social graces come and go, her recognition of special occasions or people has vanished.  Gone are her abilities to care for herself and others.  Gone is that light that shines from a person that is joy-filled and vibrant that recalls all the many threads of life that have created her own personal tapestry.  For my mom, the threads of her tapestry are frayed, with gapping holes that grow larger each day.  The threads that can never be broken though, are the threads of my love for her.  Her love will never fade either.  Alzheimer’s can steal many things, but my mom’s gentle, kind soul and love will always be there.  Although my mom has been changed by Alzheimer’s she is still my mom and I will do the best I possibly can to care for her the rest of the days of her life.​

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Overboard . . .

​Written by Kristine Perchettione mother's view of Autism
Tue, Jun 28, 2011 11:02 pm​

I am dreaming . . . 

My son, Marley, and I are on a ship.  It is so big.  It must be a cruise ship and it seems everyone I know is on the deck.  Everyone.  We aren't doing anything much, I am just showing Marley the water.  I think he will like it, but all of a sudden we are over the railing, falling. I can't stop ourselves from going over the rail.  We are pulled so fast into the water, it is like we were never safely on the boat.

When we hit the water it is harsh, it is dark and cold.  My body stings because we landed wrong.  I am trying to get Marley up to the surface.  I am trying to save us.​He is fighting me.  I don't know if he is fighting to get to the surface or to stay beneath it.  When we get to the top he is screaming and punching me and I think he is raging again.  I'm terrified and want to get out of the water.  I can't control him here and he is going to kill us both.

​Everyone is on deck.  I see them every time we come to the surface.  Everything goes in slow motion.  When we get to the surface and I can see every one so clearly.  They move slowly and seem to laugh at everything.  They shine in the sun.  They seem so calm and peaceful and happy.....so happy.  I need help but I don't want to disturb this bliss it seems that everyone else is enjoying.  I don't want to be the one to stop it.

​We go down again and Marley is clawing and hitting at me.  I think the coral is tearing at my skin but it is Marley.

​All of a sudden we are pulled out of the water and straight in the air.  My relief is stopped short when the finality of our situation hits me.  We didn't make it.  We can never go back to the boat and see anyone.

​We will never get to shine in the sun.

I look at Marley, he is laying on his stomach and his hands are under his chin.  He looks like he did in my favorite childhood photo of him.  He looks at me and gives me the sweetest smile and I think, what if they are right about what happens to us when we die, what if he gets to talk, oh God let him talk, please let him talk.  But he just smiles the sweetest smile and I slide next to him.  To feel him calm, to feel his sweet smile.

​"My sweet handsome boy," I say softly, afraid of what will come next for the millionth time.

​He gazes down and I see everyone we know.  They are leaning over the railing and looking into the water.

​"They want to help us now but it is just too late," he says like he has been talking all his life.

He looks back in my face and slowly repeats the words, "It is just too late."

But all I can think . . .  is his voice is the most beautiful thing I have ever heard.