Early morning phone call

The Early Morning Phone Call

The river stream flowed softly over my feet, soothing my tired body. Stretching my toes, I could feel the cool rocks. As I stretched out in overwhelming gratitude, the grass tickled my bare legs. I gently rolled the soles of my feet over the rocks, concentrating on feeling every inch of the bottom of my feet. It felt invigorating. I took three deep breaths, soaking in the warmth of the sun, the motion of the flowing water, feeling my body melting into the sensory sensations surrounding me. 

I stretched, sighed, and looked up at the beautiful blue sky and soft white cottony clouds floating towards the east. Suddenly, I hear a screeching clangor. I turned to the left, to the right. I could not find the source. I try to sit up but find myself swaddled by... by... by sheets. I am tangled in my bed sheets.

And the noise? My heart pounding, I look quickly around the room to identify the shrilling noise. The phone. It was the phone. What time was it? Had I overslept? Was something wrong? My heart fell when the caller ID indicated "Bill." That meant either something has happened to him or he was in a state of awareness and had asked to call me. 

Awareness is something I used to hope for. These days, awareness means sadness for Bill. I'm not sure what has triggered the difference. Maybe it's the holidays. Maybe it's seeing all the families coming and going. His clarity is incredible when you consider he couldn't even attempt a conversation two weeks ago. On the other hand, I haven't seen behaviors and haven't hesitated to take him home and on outings. Christmas Eve and Christmas Day ended in agitation and in Bill swinging at Jack at the end of the night. He of course handled it better than me. It brought me back to when we had to make the decision to leave and to help Bill find a safe place to live. Here we are again. The brain is a funny thing. 

By the time I got there, his nurses and staff had all ready contacted the doctor for me and medication changes were all ready put in place. They had also given him a prn (as needed) for anxiety to help him for my visit. Bill is in an excellent home, but he is not capable of implementing his coping skills, and they don't have enough staff to help keep him busy enough to keep his mind off of things in his life that are out of our control. 

We ate a wonderful lunch. We laughed with the staff and other residents. I had to giggle when a little lady who has some pretty severe coping issues herself, and has targeted Bill on more than one occasion for her aggression walked up to visit with us. She read my sweatshirt, one that advertises Lake Superior State University. Carefully she read the words, "Oh, that's wonderful," she said. I pointed to Bill, and indicated, "Bill was a professor there." "Oh, my," she said, "that's impressive." Staff were starting to get a little nervous, as the only thing between Bill and this little 80ish gal was me. "Have you met my husband?"  "No," Dorothy stated, "I don't think I have." They shook hands, neither of them recalling past battles, walkers being thrown as weapons, and so forth. This looked liked the beginning of a wonderful friendship, if only for this moment in their memory capabilities. 

I took Bill into his room, and we changed his clothes after a brief and very dramatic moment of incontinence. I quickly cleaned him up and put him in his favorite tshirt (AC/DC) and pair of plush soft sweat pants. I trimmed his beard and neck, teased him,

and we danced up and down the halls to the silly beat of songs as they came to my head. I sang and he laughed and bopped up and down. 

Happy New Year, Honey. We made it to New Years once again! 

Holiday Perspectives from this Pollyanna girl

Holiday Perspectives 

from this Pollyanna Girl

There are so many perspectives from this life of mine. Sometimes we have to talk about the dark side of life: disappointments. lost battles, sadness, failures, broken dreams. These things are always difficult to face, and talking about them openly helps me to heal. Sharing my experiences hopefully helps us to know we are not alone. 

The days before Christmas was a special time. The kids came home for an extended visit. I greeted them with great joy as they came in carrying baskets of laundry and hungry bellies! We worked together diligently with two days to go before the big day.  

I filled the house with fabulous holiday aromas of family favorites: cinnamon rolls, hot breads,

and chocolate cherry candies.

Jack and Deveney shoveled snow, wrapped, and delivered our homemade goodies to friends.

Christmas Eve the kids drove to the nursing home to pick up their daddy. Bill was alert and talkative and was glad to be with us in our home. We spent the day as a family, sitting around the fireplace, watching television and peacefully enjoying our day together.

As the night began to set, Bill began to cycle and sun-downer's began to rear its ugly head. The kids drove Billy back to the nursing home. The day must have been overwhelming for Bill. He became agitated once they got him back into the home.  Bill had evolved from being alert and friendly to becoming upset. He swung wildly towards Jack, muttering words about illegal imprisonment. Nursing staff stepped in, helping Bill to safety  and allowing the kids to leave safely.  Jack returned
home, his sweet Deveney at his side.

Jack was matter of fact when he shared how his dad had gotten upset. He appeared to be strong and full of wisdom I hadn't noticed before. I looked at my boy with a realization he has changed. I felt so proud that he understood. I do understand, mom, he indicated. "Thank you, mom, for what you are trying to do for Dad and me," he said. "I know you are trying to make good memories. I do want you to know though, there are some (bad) things that he's done that I won't forget." Yes, son, there are things neither of us will forget. So for now, let's celebrate some of the good things.

Let's celebrate some good memories!

Oh, and the best part of my Christmas Day? My soon to be daughter in law put my hand on her tummy and I felt my grandson kick for the very first time. Merry Christmas. Life does go on.

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.