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Posts Tagged ‘Alzheimers’

Many years ago (about twenty-one actually), I experienced one of those times where I felt confident that I was God’s hands and feet.

I was very pregnant with our our eldest daughter, and working in a group home for disabled adults.

There were five adults living in the home, ranging from about nineteen years of age to over fifty. One had regular visits by her grandmother … I never met family members of any of the others. Four of them had lived much of their lives in institutions, and this intimate home setting would be the closest to ‘family’ that they ever experienced.

I loved my job in this house, with these people.

There was the woman who loved to snuggle up beside anyone on the couch.

There was the woman who loved to grab tightly to hair … I think it was her way of having control, after all we picked her clothes for her each day!

There was the man who regularly stripped off his clothes … from the waist down … when guests were in the house!

There was the man who loved practical jokes … like the time he reached up to pinch the bottom of the lady in a line, just as a staff member stepped in front of him, and when she turned to deal with whoever was touching her behind, it was the staff member, not the jovial client who she faced.

Then there was Carmelita.

Carmelita, the first person I met when I came to the house for my job interview. She yelled at me … loudly. I was told, after I got the job, that they used her as the first line of deciding who to hire, by watching interviewees reactions to her.

Carmelita, or Carm, was a lady in her late forties, born with Down’s Syndrome (Trisomy 21). She loved gaudy jewelry, all food, and babies. When I met her she was also dealing with the effects of the later stages of Alzheimer’s Disease. She was often crying or yelling.

I remember the day I said, “Carm, you look so happy today” and she shook her fist at me, while giving me the nastiest face.

I also remember, like it was yesterday, the night I worked at the home, alone.

All of the clients were sleeping, except for Carmelita, who was in and out of crying fits. It nearly broke my heart.

Despite holding her hand, and saying soothing things, nothing seemed to allow me to penetrate the misery that she was experiencing.

Finally, I started to sing (I am NOT a good singer … ask my family) Jesus Loves Me, as I sat on the side of her bed, holding her hand. But, it was in the middle of the night, and I was exhausted.

As I sang, “Yes, Jesus Loves …” I yawned, mid verse.

Without skipping a beat, Carm abruptly stopped crying, and sang with absolute clarity, “me” to finish the verse.

Then, we sang a bit more, together. After which she fell asleep.

The next day, as I was recouping the sleep I had lost that previous night, I was awakened by my hubby, who told me that Carmelita had never awakened that morning, and that she had died.

To know that our shared song, of the most theologically relevant message, would be the last Earthly experience she would have, allowed me to feel that I was being the very hands and feet … and even really bad singing voice, of God.

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This is a most beautiful video … a real life couple, dealing with the changes and challenges of Alzheimer’s disease. In a sense, they have their own version of the beautiful movie, “The Notebook.”

http://sixtyminutes.ninemsn.com/article/8623153/for-better-or-worse

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Today I am featuring a guest post, who is not a guest.

The guest today is not the author, because the author is myself. Instead the guest is the main character in a fictional story that I have written.

About a year ago I began writing a fictional story that I thought would be a weekly feature for a few short weeks … really just a short story. What happened instead was the beginning of a relationship with this fictional woman, named Amara, for my readers, and for myself.

The story of Amara, her past and present, grew and has gone from a short story to the fictional novel that I am writing still.

Back around the New Year I mentioned in my post, Goals for 2013 – Things to Accomplish, that one of my goals was to complete the book that I had started writing. Since then I have had so many people ask me about the book, that I decided to feature it here, so that you could take a look. You will find a link from each segment to the next. There are twenty segments available in this story, so make that warm drink, put your feet up, and get to know Amara, Joy and their family.

Unfading

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This is another the final post in a series, about a woman named Amara. Every Friday I will post another segment in this story. Today is the final segment that will be added to this series on my blog. This summer I will be editing and adding to this story, in preparation for publication (hopefully) by the end of summer. When it is completed, and ready for purchase, I will provide information on my blog. I have enjoyed getting to know Amara, Joy and their family, thanks for walking this journey through their story!

Joy watched Joe and Jilly walk slowly down the corridor of the hospital, then disappear as they turned the corner to the elevator.

She let out an audible sigh.

“It sounds like you have more on your mind than just your mother.”

Joy turned quickly to face Dr. Lewis, who had such a gentle, grandfatherly face. Joy was certain that he was most sincere in his concern about what was occupying her thoughts.

“Oh, Dr. Lewis, it has been a stressful time, and so much has happened in just the past week.” Joy said, trying to be both honest, and not fully transparent at the same time.

Dr. Lewis nodded knowingly, but only knowing of the stresses of her mother’s events in that time. He reached into his pocket,  pulled out a prescription pad, and scratched something onto it.

“If you need anything,” he paused, ensuring that Joy was fully engaged in his eye contact with her, ” I mean anything,” he sounded so lovingly firm, yet concerned. “You call this number, and I will return your call before you can hang up your phone. The healer is only helpful if she has a place to go for strength,” and he placed the paper in Joy’s hand, and held it for a moment. Then he smiled, and walked towards the elevator.

Joy watched him for a long time, thinking how she had not been cared for by a father figure for a long time. She missed her father deeply in that moment, and as the doctor turned the corner towards the elevator, tears flooded from her eyes. She could feel the weight that on her shoulders, causing them to sag.

I must keep moving, Joy told herself. She took a deep breath in, and held it for a moment before forcing it out again, ever so slowly.

Then she turned towards her mother’s room, and walked determinedly towards it, where she stopped, took another breath, and slowly, ever so slowly pushed the door so that she could peek in.

Jessica was still curled up on the bed beside her mother, both with their eyes closed. Joy took in the picture before her as she had with the breaths of air … whole, fully, and not wanting to let the image go, in fear that she might never get it back again. It was a beautiful, peaceful image before her. One that put her at ease, at rest, simply by being a voyeur to the intimate moment so close to her, and yet she was so removed from it.

As beautiful at the image was, as peaceful at it was to look upon, Joy felt such regret that it was not she who her mother desired to be close to. As she deeply felt that regret, she also knew that she had been pushing her mother away from her for most of her life. Maybe, at some level, Joy had been punishing her mother for the choice she had to make all those years ago, to give her time and attention to her dying son. Now, as an adult and a mother, she considered what she might have done? What other choice did her mother have, but to leave her healthy daughter’s care to her own parents, so that she might be able to care for her desperately ill son?

Joy so wanted to walk over and embrace her mother, but she could not face the possible rejection that could very well be the response from her mother.

She stared longingly at the pair on the bed, when Amara’s eyes opened, and looked to Jessica.

“Oh my sweet little one, you look so lovely when you sleep,” Amara said, to Jessica, as she continued to embrace the child’s head with her hand. “You fill my heart with love. You make me smile. You are the answer to my prayers.”

Joy could feel tears welling up in her eyes.

Jessica moved in her sleep, closer to Amara, who was smiling with great satisfaction the closer Jessica got to her.

“Oh my sweet, sweet little girl. You bring me such … ” and Amara stopped speaking for just a moment, just long enough to kiss the top of her head. “That is why I called you, Joy.”

The tears that had been welling in Joy’s eyes were now loosed by the realization that her mother did not think that she was holding her granddaughter … but her daughter.

Unfading – Part 1

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This is another post in a series, about a woman named Amara. Every Friday I will post another segment in this story.

When Joe and Jilly got home from the hospital, Joe realized, for the first time since getting into the car, that he had been so pre-occupied in his own thoughts, he had forgotten that Jilly was with him. As he looked to the passenger seat, he smiled, as Jilly was sleeping peacefully.

How she had grown, from the little girl he often still thought of her as. She reminded Joe of his own mother, with her long eyelashes, chestnut hair, and petite nose. He missed his mother, and wished the Jilly could have known the woman who she resembled most.

Joe unlocked and opened the door from the garage to the house. He then, carefully, opened the passenger door, and lifted Jilly into his arms. He carried her to her room, when he lay her on her bed, and covered her with a quilt. He looked again at his firstborn and noticed how, her sleeping state reminded him of the many times he had carried her from a vehicle in the garage when she was little. The memories caused a smile to spread across his face, as he realized how fortunate a man he was, how blessed a man he was.

He walked from her room with a goal in mind, and now was the time to get going on it.

Joe walked into the small office in their home, and sat in the large, comfortable chair, as he reached in his pocket for his cell phone.

He clicked on the text button, and read, again, the text that Roxanne had sent, the text that Joy had read, the text that may have changed his life forever.

“Call me, I NEED to talk with you about a ‘business trip’ I am proposing. You owe me big time for leaving just when we were so close 😉 . Roxanne” Joe read it over again, and again, and again. Then he realized that this text, and that Roxanne herself, were not responsible for changing his life, his choices over the past months were where the responsibility lay. He chose poorly, and he had to accept that responsibility if he would ever be able to look Joy in the face again, if he were ever to even hope that she might accept his repentance.

When he located Roxanne’s number, identified as R. Baker, he looked at the time, but then realized that it was now or never.

As Joe heard the ringing of Roxanne’s phone, he realized he had not rehearsed anything to say, and started to panic, as he pondered hanging up. Just as he was about to lose his nerve, a familiar voice answered, “well now, I was beginning to think that you were never going to speak to me again.” Joe could almost see her cheeky smile as she spoke, but it did not have the same euphoric affect on him this time.

“Roxanne, I need to talk with you,” Joe was plunging in with both feet, and he wasn’t going to back down.

“Oh Joe, of course you need to talk with me, after all, we are partners … well, we were almost partners,” Roxanne said, with a giggle that insinuated the path that they had been following.

“Roxanne, it is very important that I get this all out, before I lose my nerve,” Joe took a deep breath, then proceeded.

“I need to apologize to you. I have been so wrong in pursuing this relationship with you. My marriage vows to my wife should have meant more to me than my actions have showed. I never should have kissed you …” Joe stopped and realized that there was more “… I never should have even thought of it. I want you to know that I was the one who blew it, not my wife. She could not have pushed me away if I had not been so easily swayed. Roxanne, I plan to put every effort into my marriage. I will die trying to prove that I have learned my lesson, and that I am fully and completely committed to my wife and our marriage together.”

Joe was done, everything that needed to be said, he had said, except … “good bye Roxanne. Please forgive me for bringing you into this sin of my own doing,” and with that, he hung up the phone. He looked out the window onto the front garden. It seemed as though he had never seen it in such detail before this moment. He had a goal, and it was one that he was going to do everything in his power to achieve.

He was going to win back the heart of the woman that he had hurt, deceived and broken.

Now, if only she would allow herself to open her heart up to him again? Then Joe pondered to himself, if I knew this whole story, and I was not the offending me, would I advise her to give me a second chance?

Joe sighed a deep sign, realizing that this was going to be far more difficult than he might imagine.

Unfading – Part 1

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This is another post in a series, about a woman named Amara. Every Friday I will post another segment in this story.

“Jessica!”

Joy, Joe and Jilly were all calling out her name, when a nurse came over and asked them what was going on. She was kind, but it was obvious that yelling out their daughter and sister’s name in a hospital was not an acceptable thing to do.

“Our daughter is missing, and she is only five years old,” Joe said with a voice absent of any confidence.

“Do you have a photo of her that I can share with the others on this unit, and then maybe we can help you to locate her?” She asked, with great sympathy for the fear that was written over all of their faces.

“I have one in my wallet,” Joe quickly responded while searching for the photo. When he pulled it out, there were three other photos that came tumbling out of his wallet at the same time. The one of Jessica, that he had been seeking in the beginning, followed by one of Jilly, one of Joy and one of their whole family taken last Christmas.

Joy frowned as she picked them off the hospital floor. She had no idea that Joe might have pictures of them on his phone, let alone physical photos in his wallet.

She looked at the the photo of herself, one she had given Joe when they were first married “to look at when he had to be away on business, and they spoke on the phone. So that it was just like they were together when they were apart,” was what Joy had said. Then the one from this past Christmas … everyone smiling, but the unhappiness evident to Joy, as she looked at the perfect, but posed smiles of she and Joe. Jilly had changed so much already, in just a few short months, as adolescents was transforming her from the inside out. And Jilly, that beautiful, innocent smile, so full of joy. Oh, where was Jilly?

The nurse took the photo, photocopied it, and shared it with the nurses and any other hospital employees, including Dr. Lewis, who had still been on the unit, and a search ensued. Joy wandered the halls of the unit, aimlessly.

“I found her,” Jilly’s excited voice echoed down the halls of the hospital unit.

Everyone who heard her voice came running to where she was standing. Through the window of the door of room 201 was a most serene and touching scene. Little Jessica, snuggled up on the bed beside her grandmother. Amara’s arms were wrapped tightly around her, while she petted the top of Jessica’s head.

As Joy slowly opened the door, her heart almost stopped, as she heard a familiar tune being sung by her mother:

“Longing for you all the while, More and more;
Longing for the sunny smile, I adore;
Birds are singing far and near, Roses blooming ev’rywhere
You, alone, my heart can cheer; You, just you.
Let me call you “Sweetheart,” I’m in love with you.
Let me hear you whisper that you love me too.
Keep the love-light glowing in your eyes so true.
Let me call you “Sweetheart,” I’m in love with you.”

Joy was instantly transformed to another time and place. She was back in that special place in the clearing in the woods. Her mother and father, she and Jacob, relaxing and enjoying special family time, after their picnic lunch. Her father standing up, and extending his hand to her mother, who blushed. She took his hand, and he led her in a dance on that grassy, sunlit space, that became the dance floor of a beautiful ballroom. Joy could almost hear her father humming the song, as he plead her mother with his eyes to sing the words … and she did. Then he held her even more closely, as the two of them slipped into a place that was intimately theirs.

Jacob and Joy did not even respond as children often do, with groans and gagging, as their parents showed loving affection for each other in front of them. Even they, at their young ages, were swept up in the moment of beauty, of love, and of a magic that children rarely get a glimpse of anymore.

Amara’s voice was beautiful, solid, and confident. She had a voice like Kate Smith, that sounded like every part of her being was singing along with her voice.

Joy remembered her trip to Disney World, with her grandparents, and how every princess seemed to sound like her mother’s soothing, beautiful voice.

That song that Amara was singing to little Jessica, was the one that Joy had heard all through her childhood. Hearing it now took her back to not only that day in the clearing in the woods, but also to times Joy had forgotten about. Times when Joy was held on her mother’s lap, as a very young girl, and her mother would sing to her. She sang it when Joy was sad, she sang it when Joy was happy. She sang it when Jacob was dying. She sang it when Joy’s grandfather died … but, she never sang it when Joy’s grandmother, her mother’s mother, died. As a matter of fact, Joy could not remember her mother ever singing that song again … until now, in her hospital bed, with her youngest granddaughter in her arms.

Joy felt Joe’s hand on her shoulder, and the magic was gone.

Joy needed to get freed from Joe’s touch. It felt like sandpaper on her soul.

She turned around to see Dr. Lewis standing just off to the side, from where the group of people were watching little Jessica curled up with her grandmother.

“Dr. Lewis, why is my mother not upset about my daughter’s presence? She screamed when her other granddaughter entered the room, and she screamed when I was there, as though she did not know us. Why is she not bothered by Jessica’s presence?”

Joy hoped that what she was feeling was not evident in her question. That feeling was envy. She was ashamed to be feeling envious of her own daughter, but, after-all, she was Amara’s own daughter! Why did she not remember Joy, but she remembered Jessica?

“I really do not know the answer to that,” Dr. Lewis replied. “It could be that she is have a moment where her memory of the present time is clear again. It could be that she is reliving the past with your daughter, seeing her as someone else. Alzheimers is not a predictable disease. The amazing thing is that she is singing clearly, the garbled speech is not at all present right now, and that might be a good indicator in relation to her recent stroke.”

Oh, a bright light! Joy thought to herself. She had not even realized this change when she first heard her mother’s voice. Maybe her mother would recover, and go back home after-all.

“I think that it might be best if we do not disturb them, “said Dr. Lewis. “Joy, if you could stay close. Maybe you could quietly move into the room, just in case your mother’s memory slips, and she scares your daughter.”

“Of course,” Joy said, glad to have something that she could do.

“Is there any danger for Jessica being there?” Joe said, shaking Joy.

“I do not believe so,” the doctor said confidently. “The concern is more for how your mother’s response might scare your daughter. She is really too weak, physically, to hurt your daughter.”

Joy breathed a sigh of relief, and looked at Jilly, noticing how young she looked for a change. Adolescence seemed to have meant the every day she looked older, taller, more like a woman. But right now, the fear in her eyes made her seem more a child than a young woman.

“Jilly, how about you and your father go home, or do something fun together? I will call you as soon as something changes.” Joy could see that Jilly was looking so sad, so lost.

Jilly motioned her mother aside to speak to her privately. “Momma, why does Nanna remember Jessica, but she screamed when she saw me?” Jilly’s tear-filled eyes spilled down her cheeks.

Joy quickly wrapped her arms around her child of adult body, but child-like heart and mind. “Oh sweetie, I know how you feel. Nanna screamed at me too.” Joy’s own tear-filled eyes spilled over as well. “I don’t understand this any better than you do. All I know is that it hurts so much.”

As they stood there, sobbing in each others arms, Joe came over to them. He placed his arms around them both.

Joy quickly moved away from his touch, and placed a hand on each cheek of Jilly’s face, “you go home with your father, and I promise, I will call you as soon as I know something.”

Jilly nodded, wordlessly, and took a deep breath.

Joe was very aware that Joy was not talking to him, that she was not wanting his touch, his words … his presence. He knew that what she had read on his phone had created a flood of imagination in her mind of what might have gone on. He knew that he had killed a part of her, and that with it, a part of ‘them’ had died as well.

And he knew, then and there, that what he had not done did not make him innocent, because he knew, as Joy knew, that in his heart, he had replaced her with another. He knew, what he had not realized in the months of ‘innocent’ conversations, that he was guilty of emotional unfaithfulness, and that may have drive the final nail on the coffin of Joy’s ability to love him ever again.

Unfading – Part 1

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This is another post in a series, about a woman named Amara. Every Friday I will post another segment in this story.

When Dr. Lewis left Joy, she started feeling the weight of all that was going on in her life.

Her mother would appear to have just had a stroke, on top of Alzheimers Disease. Her husband would appear to be having an affair with a business colleague.

“I just cannot do this. I do not know where to turn. I have no hope,” Joy said under her breath.

“Momma! Momma! I missed you. Did you miss me?” Jessica’s joyful voice echoed in the hospital hallway. Everything within Joy was so out of energy to give, that she really had nothing left to offer her little girl. She felt lower than she ever remembered feeling. She had no vision of the future, and could not imagine things getting worse. She was hopeless.

Then, as Jessica’s arms wrapped tightly around her mother’s neck, a feeling of deja vu surrounded Joy. All of a sudden, Joy was in the place of her mother, so many years ago, when she had to deal with the deaths of both of her parents and her son. Joy, for the first time, understood why her mother had not … could not return her little daughter’s embrace. All of a sudden, Joy, for the first time in her life, understood that her mother had not rejected her, but that she had nothing to give her little girl, because she was hopeless.

Joy knew that she had to respond differently to her daughter than her own mother had responded to her. She knew that it would be an act of extraordinary strength, coming from a place within her, that even she did not know existed. Joy forced her arms around her daughter, and held on for dear life. As she held Jessica, and Jessica held her, Jessica’s head lifted, so that she was staring into the closed eyed face of her mother.

“Momma, why are you crying? Are you sad, Momma?”

Joy opened her eyes to see the most beautiful, innocent, loving eyes. As she looked into Jessica’s eyes, she saw the eyes of her mother staring back at her. “Oh Jessica, I just feel so loved by you,” she finally was able to say.

“I have the best Momma in the big, wide wold,” Jessica said, with the pronunciation of a New Englander, as she held on to her mother, even tighter.

“Is it okay for Jilly to go into Amara’s room?” Joe’s voice cut deep into Joy’s heart. Just moments before she was in the midst of the sweetest momma moment with Jessica, but with the sound of Joe’s voice, Joy was reminded of the hurt associated with Joe and the text message she had read on his phone.

“Go with her. Mom may not recognize her” was all Joy could say to Joe.

Joe seemed oblivious to the heartache that Joy was feeling. That was exactly Joy’s intent. The last thing she wanted was to allow tension and stress to take over in front of their daughters.

As they walked to Amara’s room, Joy prayed that her mother would at least recognize Jilly. All of a sudden screaming and yelling, followed by Jilly running out of the room to her mother. Her wide-eyed appearance told Joy that indeed her mother did not recognize her first granddaughter.

“Mom, what is wrong with her? Why did she not know me? What did I do wrong?” Jilly was trembling with fright.

Joy reached out for her daughter, and embraced her, as Jessica moved to allow her big sister to be comforted by their mother.

“Please do not take it personally, Jilly. She has moved into a new stage of Alzheimers and she is confused. I promise that the Nanna you know is still in there somewhere, and she knows and loves you.” They held on to each other, as Joy tried to help Jilly relax, and return to calm.

“Oh Joy, did you get to speak to a doctor this morning? What is going on with your mother?” Joe’s concern was heard as acid to Joy’s ears.

“Jilly, are you okay for me to tell you what the doctor said earlier? Or would you rather not hear until we get home?” Joy asked Jilly in a manner that indicated that she was speaking to her as an adult.

Jilly nodded.

“Dr. Lewis, who was so kind, spoke to me this morning … ” Joy sighed, “after my mother yelled and screamed at me the same way she did at you Jilly. She did not recognize me …”

“Mom, Nanna didn’t know you either?” Jilly asked in wide-eyed amazement.

“No, she didn’t, Jilly, and she was even more terrified by my being in her room.”

“Is that the Alzheimers then?” Joe asked, concerned. His concern was grating on Joy’s nerves. She just wished there was a way that she could tell him to leave … for good.

“Dr. Lewis said that she has had a stroke. They are unsure of the severity of it, but it has affected her speech. The not knowing us is probably related to the Alzheimers, which is unpredictable as to how it will affect her from day to day, and person to person.” Joy was relating all of this information as she held perfect eye contact with Jilly. She was determined to not lose her daughters during this time of struggle.

“The biggest battle is that she also has pneumonia …” Joy began to fade, as her ears, her mind, her heart was re-hearing the doctor’s words.

“That is treatable, right?” Joe’s voice was really causing a rise in blood pressure for Joy. It took a significant amount of self-talk for Joy to not scream at him.

“The doctor said that mother may never go home again,” and then the tears fell like a river down her face, as Jilly held her mother. Joe knelt down on the floor in front of Joy, and wrapped her arms around she and Jilly. Joy’s body tensed immediately. She reached into her pocket, pulled out Joe’s cell phone, and handed it to him, with the text opened for him to read …

“call me, I NEED to talk with you about a ‘business trip’ I am proposing. You owe me big time for leaving just when we were so close 😉 .” Roxanne

As Joe read then bowed his head, Jilly shouted out, “where is Jessica?”

Unfading – Part 1

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