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THE BIRTH OF A BOOK

At long last the wait is over, and the book is in print!

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I think back to the many emotions, fears and doubts about opening my heart and soul for the entire world and the reservations that almost kept me from following through with the task that I had started. This was not a book that I could hide myself behind a pen-name, or make up fictional characters to tell my story.  This had to be real, true to myself, feelings.  That,  was just the beginning of putting thoughts on paper.

Then came the self-taught journey of self-publishing, without a clue of what I was getting into, or the steps involved in getting to the finished product.  I had high hopes of delivering this baby before March (I had a self imposed deadline to publish a book at 60 years old.)  Needless to say, March came and went.  Then as I “thought” I was getting closer to a publication date, I would tell family and friends, “six to eight weeks, it should be in print.”  I know I said that line much longer than six to eight weeks.   This was all before I was actually into the full blown final editing process (aka…hard labor!) Submit pdf file, wait a week for proof copy.  The thrilling moment of holding an honest to goodness real book with my name on the cover!  Touch, it, feel the paper, smell it.  It is real.  Open the book, skim through it, spot the mistakes that jump out at you and rip your heart out, as you wonder, “How could I have missed that, and that, and that!” Correct what seems to be hundreds of mistakes.  Submit corrected pdf copy again.  Wait another week for a proof copy.  Open the new proof copy, a little slower and a bit more fearful this time.  Skim through, praying, and then realizing….this can’t go out like this!  Back to the pdf file again! Contemplating calling it quits, cutting my losses and running the other way!

Finally, it is available in paperback on Amazon.com. Waiting for my first shipment to arrive, so I can get on with self-promoting and book signings.  Kindle, I am told, is going to take another 3-4 weeks, because it is formatted differently. Another lesson learned in self-publishing! (I caused my own problem here, by my lack of knowledge in both publishing and computer technical training.)  This old lady needs to take some computer classes for seniors, or hire someone to do the work for me!

As with any first child, and not knowing what you are doing, and what to expect while you are expecting…..I hope I have learned enough to make the next delivery and birthing process much easier!

I have learned a lot through this journey about Alzheimer’s disease and the effects of everyone touched by it.  I have learned the art of re-directing the thought process of my Mother, in an effort to change an unhappy mood and make her smile again.  I have learned there is a vast world of legal, medical, ethical and social issues that all play in how we handle this world of Alzheimer’s.  I have learned that as much as I want to, I cannot do it all, and that I must spend some time taking care of me. I have learned to let go of some control issues, because I know that I am NOT in control with any of this.  It is all under God’s control, and He has given me a voice and a means to share what I have learned.

I hope that my book will help others in their own early stages of this cruel disease.  I hope that this book will let others know that they are not alone in this journey, and that while there is great sadness and fear, there are moments of joy, if we are open hearted to see them.

Saturday Joy…(continued)

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Over the past several months, I have from time to time, told my Mother about the book that I have been working on. I have told her that I was writing about what we have been through together, during the past several years. I have said that I want to share our story, so that maybe we can help someone else to understand, what to expect from this disease.  She has always responded positively, never seeming to be concerned or agitated. When I asked point blankly if it was okay to share our story with the world, she always responded with, “Yes” or “OK.” A few times she even said, “That’s good.”

Did she really understand what I was saying? I do not truly know the answer to that question.  However, I have seen her upset at some of our conversations, and engaged in others. That is why I believe that on some level she did know what I was saying.  In my own mind, I believe that her response of, “That’s Good” was giving me permission to go ahead with my plan.  Of course, I felt I had received God’s blessing a month ago with the “Family Circus” cartoon that was published in the paper, on the exact day that I had submitted my manuscript to the printing company. (See my previous post titled, “God Winks.”)

On this particular Saturday afternoon, with the sun shining down on us, I showed her the proof copy of our book.  Her immediate response appeared to be amazement.  There was even a small gasp of delight.  She said, “Nice.” I showed her my name on the cover. She said, “Yes, uh-huh.” I turned the book over to show her the back cover, with our picture.  She started laughing and said, “Oh yeah, like we really need that one!”  I laughed with her and told her, ” That picture is  the most important one, because that is the two of us, and this is our story together.” She said, “OK.”

Then I opened the book to the dedication page, she took one look at the picture, and smiled, very proudly, and proclaimed, That’s me, That’s me!”  I tried to remind her that we are sharing our story with a lot of other people, and she said, “Good.”

She flipped through several of the pages and attempted to read some of the words. So I found a passage to read to her.  She smiled and mumbled some comments.  Mostly agreeing with what I read.

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Did she really understand?  It was a very beautiful, clear and sunny day and Mom was in good spirits, very alert and  responsive.  I want (need) to believe that on some level she did understand. I also believe in my heart that this entire day, was another “God Wink.”

FINDING JOY ON A SATURDAY AFTERNOON

This past Saturday, I was out the door  just a few minutes after 7:00 am to run to the store to buy snacks for taking to church for our monthly Healing Mass, Prayer Shawl Blessing and social hour.  It is a great joy to be a part of this Ministry and see how it has grown and flourished among other parishes and denominations  in just one short year.  It is quite rewarding to hear the stories of comfort that these shawls have brought to those in times of need and in joy.

Then it was 2 hours of sitting in a chair while my hairdresser worked her magic!  Drive through McDonalds for something to feed the tummy, while I drove the 20 miles to go visit Mom. (I know this wasn’t the healthiest lunch, but it was something I could eat while driving.)

I had arrived  just after Mom had finished her lunch, and was not yet put down for a nap.  She was wide awake and alert.  It was a beautiful sunny afternoon, so I took her outside to enjoy the fresh air. I put her chair next to one of the high-back rocking chairs, so we could sit side by side and talk. I don’t know if it was being outside in the fresh air, or just the right moment at the right time, but Mom was very talkative and laughing.  I understood more words today than I have in a very long time. Some words even formed  semi-complete sentences.

Mom became very interested in one of the necklaces that I was wearing. She picked out the simple strand of red beads, fingered a few of them and said in very clear and understandable words, “I had one like that.”

When I realized where I had gotten it, and yes indeed she was right, she did have one like it. I laughed. She repeated it again, so I thought she must be waiting for an answer.  I said, “Yes, you did have one like this, and you gave it to me.” A puzzled look came over her face, and for a minute I could see the thought process going on behind her eyes. She responded with, “I don’t think so.”

The conversation moved on to other subjects.  She talked about Jim and how hard he works, she talked of his girlfriend, she talked of her younger brother Jerry and when she used to babysit him. We laughed in between each story she told. Throughout most of this time my hand was resting on her knee, her fingers , touching, exploring and feeling every inch of the hand resting on her knee.  At one point her fingers wrapped around my wrist, she raised my hand up, studied it, turned it over and looked at both sides.  She held my wrist a little bit higher and asked, “Is this yours?” Of course I laughed as I said, “Yes that is my hand.” She gently placed my hand in my own lap, patted it, and said, “There.”  Then she went back for the necklace, again taking the red beads, and saying once more, “I had one like that.”  I repeated that she had given it to me. It was truly amazing to watch her with a furrowed brow, thinking and trying to process what I had said. Once again she said, “I don’t think so.”

My joy went beyond the pretty sunny day, and sharing the afternoon outside with Mom.  It was knowing that she was right, and that she knew it too!  Indeed, the necklace had been hers, and no, she did not actually give it to me, though it is mine now.

As we turned to go back inside, she noticed the big flag waving on the pole by the pond.  She said, “We have lots of flags here.” She is right, the  decorations that are changed for each holiday or season have us seeing red, white and blue everywhere.

What a joyful day this was!

ELSEWHERE

I was meandering through the bookstore, not really in need of buying a new book or magazine, just enjoying the pleasure of looking, feeling and smelling the books.  Not to mention the aroma of the Starbucks coffee in the corner!  I came across a table labeled, “HIGH SCHOOL SUMMER READING SUGGESTIONS.”  My eyes instantly focused on a cover  picture of a snow globe, with a cruise ship nestled in amongst the glittery falling snow.  I was reminded of a stash of beautiful snow globes that I had collected over many years, and through my own negligence lost them all.  One should have known that when you move to Wisconsin, you do not store fragile snow globes in the attic of an unheated building. The water froze, the glass cracked, and I was left with bases and their intricate little sculptures, but no more free falling snow!

“ELSWHERE,” by Gabrielle Zevin; “After 15 year old Liz Hall is hit by a taxi and killed, she finds herself in a place that is both like and unlike earth, where she must adjust to her new status and figure out how to live. How can Liz let go of the only life she has ever known and embrace a new one? Is it possible that a life lived in reverse is no different than a life lived forward?”

OK, I was intrigued, I have found myself reading heaven-related books lately, and this looked interesting, and yet light and easy reading.  Perfect for reading while on a plane to Houston. The book never referred to heaven or God, this was not about the heaven that I was taught in my Catholic school upbringing.  But I was totally drawn into the author’s vivid imagination.  At times very cheesey, at times laugh out loud funny!  I tried to ignore the “look” from my husband in the seat next to me when I was laughing.

There were times, I totally wondered, “what if?” As Liz is reunited with family who had gone before her, and her struggles to communicate with family she left behind.  Clearly trying to understand and cope with two worlds.  Spoiler alert here:  In “Elsewhere,” the residents age in reverse from the age of their death, until they are babies again and then are reborn.  A complete circle of life.  I kept comparing “Elsewhere” to Alzheimer’s disease, reversing in age. An 80 year old person becoming child-like, eventually needing to be spoon-fed and back in diapers again, mumbling and chattering, very few understandable words. Totally trapped between two worlds.  Is Alzheimer’s disease, “Elsewhere,” but on earth with loved ones around?

I don’t believe this comparison was the author’s intent, but it is my own personal take from the story.  Now when people ask the repeated question, “How is your Mom?” I could just simply say, “Elsewhere,” but they wouldn’t understand what I meant, but does anyone really understand any other answer that I can give?  Yes, I do believe, “Elsewhere” is a very appropriate answer.

GOD WINKS

One of my daughters has always used the term, “God Winks,” whenever something appeared to be a coincidence.  There are no coincidences,’ they are little nods of approval from God, but you have to be open minded and have an open heart to see them.

Today was a beautiful breezy, sunny day.  A perfect day for pushing a wheel chair around the grounds of the memory care unit, for sitting on the patio and chatting. (I am not sure what we chatted about, but we chatted.) Occasionally a strong breeze would blow and mom would laugh as her hair blew in the wind.  After a little bit she told me it was time to go in.  We went into the library where the windows were wide open and the curtains were blowing full length into the room.  She thought it was very funny as they blew almost close enough for her to catch.

During various visits I have told Mom that I am writing a book about the two of us.  I have told her that I want to share our story of what we have been going through.  That maybe we can help other people understand what this disease is does to all of us.  She always says “OK, that’s good.” I really don’t think she knows what I am talking about or what she is agreeing to, but I feel better thinking that on some level she is giving me permission to go through with my plans.

If you read my last post, then you know that Mom’s favorite comic strip was, “Family Circus.”  Today’s cartoon had the young boy sitting at a desk with paper, pencil, and an open book.  The caption: “Mommy, I wanna write a best–selling novel.  What should it be about?”

Today was the day that I officially submitted my manuscript and cover design for publishing.

I think this was a “God-Wink!”

STIRRING UP MEMORIES

It is early Tuesday morning, and I am finally getting around to reading Monday’s paper.  A routine that has become quite normal for me these days, and I admit I miss out on a lot of things that I wish I would have known about or done yesterday! Oh that old saying of, “A day late and a dollar short.” Certainly describes my life!

Today’s paper is lying in the driveway getting soaked from the morning rain, but who wants to get dressed and go out in the rain to get it?

There are only a couple of the “funnies” that I truly pay any attention to. One is, “Family Circus” Mom’s favorite. She  created a scrapbook of her favorite one that she had cerfully  cut out and saved, highlighting each one with scrapbooking paper cut with decorative scissors and stickers.  Most of the cartoons are timeless, and bring heartfelt joy whenever I pull the album out and reminisce.  I am reminded of how creative she used to be with just the simplest of things.

One of my favorites is “Hi & Lois.”  Monday’s cartoon showed Baby Trixie sitting in her high chair holding a slice of pizza to her mouth.  The Mom exclaiming, “She can’t chew that.” Baby Trixie’s thought bubble said, “But I can taste it.”

An instant flashback to about six months ago. I was visiting with Mom in the dining room, just as lunch was being served.  Given the option of Chicken Alfredo or Pizza.  Mom asked for Pizza, I said, “She can’t chew that.  She doesn’t have any teeth.” They brought her both.  Since she asked for Pizza, she got Pizza.  I watched as she took her spoom and scraped off the cheese and pepperoni into a pile on her plate.  With her fingers she then proceeded to pinch off tiny bits of the cheese that she could manage to gum and soften enough to swallow. She also sucked out every bit of flavor from the pepperoni.  Then at times she broke off a piece of the crust, sucked it like sucker,  softening that crust until it was pure mush, and easily swallowed.  She savored every bit of that slice of pizza!

Just like baby Trixie, she may not have been able to chew it, but she most certainly did taste it!

Alzheimer’s disease may be full of difficult times, but there are also joyous memories that creep into my daily life when I least expect them. I am grateful that I have been able to have been a part of these learning moments. Just as I am learning what Alzheimer’s is, we are both learning what it isn’t. Mom was teaching me that there was a way to still enjoy what she could, in her own way, and without help.

I told this pizza story in a post late last year, but I had to tell it again since “Baby Trixie” stirred up the memory once more.  

Memories are everywhere, if we just take the time to see them!

Little Blessings From God

One thing that I have learned on this roller coaster ride called, “Alzheimer’s,” is to always expect the unexpected.  I used to hope and pray for some large miracle, something like walking on water. But, I know that is not going to happen with my Mother.  The little unexpected surprises that God springs on me from time to time brings me more pleasure than I could ever have imagined.

My previous two visits left me pretty depressed.  Mom was not even aware of my presence at either visit.  One time she was lying in a fetal position, awake, but not present with me.  She did not communicate or make any eye contact with me.  She only stared off into the distant space with glazed over hollow eyes.

Another visit, she was literally sleeping like a baby.  Flat on her back, both hands clenched into little fists, up on each side of her face.  Deep diaphragmatic breathing, her tummy rising and falling with each breath.  I tried several times to wake her, but, like a baby she made a suckling motion with her lips, but she never woke up.  She reminded me of my own daughters when they were sweet innocent little sleeping babies.

Today, she was sitting in her wheel chair in the dining room, waiting for lunch.  Her face lit up when I got near.  She put her hand out to welcome me.  She asked, why I was there. She chatted non-stop. Not all words were recognizable, but I did understand a few of them.  She told me several times that she liked my sweater. She ran her fingers up and down the cable stitches. Then she started counting….8,9,10,11,12,13,14,15,88. She moved her hand over to another line of cable stitches…….8,9,10,11,12,13,14,15,88. She fingered each button.  Then she asked, “What is your name?” I told her, “Carolyn,” she thought about it for a minute, then said, “hmm, how about that.  I like that name.”  She went back to chattering that I could not decipher.

God’s little blessings of clear bright eyes, smiling lips, and conversation made this day very special!

Thank you Lord for the gifts You give!

Second Anniversary Week

This past week was a very difficult one in so many ways; so many different emotions for so many different reasons.  I have always been taught to not ask God “why” and yet I find myself asking it anyway.  If I don’t say it out loud, it doesn’t count, right? I know we live our lives according to His plan, not ours, but sometimes it is so hard to understand how the plan makes any sense.

On Tuesday of this week, I  attended  the funeral of a 49 year old cousin who died very unexpectedly.  This was twice as sad, because his death came just two months after that of his 55 year old brother.  Two young men – gone much too early. “Why?”

This week also marked the second anniversary of Mom’s move into the secure Alzheimer Unit.  I can remember every detail of March 14, 2011 like it was yesterday.  Those memories are etched forever in my heart.  Mom’s day started with her laughing, and talking happily, as we packed a small bag for an overnight stay at another facility because maintenance needed to repair her furnace.  (This was the story conjured up to get her moved from Assisted Living to her new home.) I watched as her demeanor changed and she realized there was  change happening that she had no control over.  I cried as she told me to get the hell out and leave her alone.

In the past two years, I have watched my Mother change before my very eyes.  She used to tell wonderfully funny stories one minute and then be totally mean and hateful.  She could walk so fast that the nursing staff could barely keep up with her.  She loved to walk the halls and look at all of the pictures, as well as help herself to other people’s candy whenever she could get her hands on it.  She took joy in eating a heavily frosted cupcake, and getting it all over her face, and like any child, absolutely hating to get her face washed.

Today she has to be picked up out of the bed and set into a wheel chair to go to the dining room, where she has to be fed her meals, because she can no longer feed herself.  She sits nearly lifeless for hours on end, jabbering to anyone who will stop to talk to her.  Very few words are understandable, but Mom still likes to laugh.  If she laughs, I laugh with her.

I often wonder what is going on in that head of hers, especially when she is being picked up and put back into bed.  It is with one sweeping motion that Mom goes from sitting in the wheelchair, to a standing  position, then on to lying down.  Mom is holding on with both hands clutching one nurse’s arms, while another one is lifting her feet to the bed.  A slightly audible “whoa,” with eyes showing confusion and maybe a bit of fear, as she is settled into the bed.  She has such a tight grip on the nurse’s arms that her hands have to be literally pried open, very much like my own whenever I ride a roller coaster!  I wonder if that is the same kind of fear that she is feeling?  OR Was that slightly audible sound more of a “wheeee!, rather than a whoaaa?  Who really knows?

This week’s melancholy was compounded by the death of a friend’s mother who has been riding her own Alzheimer’s Roller Coaster for almost as long as we have.  I knew attending that Funeral Mass would be hard, but I had no idea just how hard it would be. I thought I would find comfort along with  another friend whose mother was also a member of our select little group riding this ride.  I was totally shocked to learn that her mother had lost her battle in December, and I was not aware of it.  In December I was totally consumed in my own world of calling in Hospice Care and dealing with dramatic changes in Mom, and oblivious to anything going on outside of it.   I was also dealing with my own health issues as well.

Friday morning I sat in that church crying and asking, “Why?”  Why do some get to take a shorter ride before going to heaven?  Why do some have to be left behind to keep on riding the ups and downs, the twists and turns?   How long does this ride last?

My friend sitting with me said, “God isn’t ready for her yet, there is still a reason or purpose for her to still be with you. He will let you know when your job is completed. You have to look for your purpose”

I started writing this blog and the soon to be published book because I thought by sharing our story, we could help others going through the same hell. Maybe I still have more to witness and learn, maybe there is more to share, that I am not aware of yet.  But that does not make it any easier to watch my beautiful Mother slowly wither away right before my eyes.

  I know I will never understand  why.   

WHAT IS LOVE

By definition Love is: to feel tender affection for somebody, such as a close relative or friend, or something, such as a place, an ideal, or animal, to feel desire, romantic, sexual or longing for someone.

Love is different things to different people  and at different times of our lives. As babies and toddlers we depend on the love of our parents to nurture us and teach us how to grow and love. We depend on holding their hands until we can walk on our own.  As young adults we experience the passionate young love that leads us to the partner that we want to spend the rest of our lives with.  That love  is followed by our own babies to nurture and love and then the blessings of grandchildren that love us unconditionally.

Then comes the time when we once again hold the hands of our parents, as we nurture and show them our continuing love and support.  We hold their hands as they become childlike and we, the children,  assume the parental role.  We hold their hands  because we are really hoping to hold on for just a little while longer.

 

Then there is the love that I felt on this rainy stormy Sunday morning.  Let me start off  by saying that I am a very private person and that I do not usually share intimate details of my bedroom, but today I am making an exception.

As I woke to the sounds of the pouring down rain and thunder this morning, the first thoughts to come to mind were of Keith Urban singing “Raining on Sunday.” (Yes, I love Keith Urban!)

“Who said life was easy, the job is never through, it’ll run us ragged, it’ll harden our hearts, and love could use a day of rest, before we both start falling apart.  Pray that it’s raining on Sunday, stormin’ like crazy”

I decided right then and there, that there was no need to rush into the day.  The chaos of the kitchen remodeling project could wait a few hours, and I then heard the often repeated words of my mom, “Honey, you can’t do it all.”

Barely awake, I snuggled in a little closer to my husband, using his left arm as a pillow, when I realized that Brodey, our 65 lb. yellow lab, who does not like storms, had joined us in bed.  He snuggled in closer to me and laid his head on my left arm.  Harley, our smaller 40 lb. black lab was curled up against my legs using my feet as her pillow. As I surveyed my surroundings, I knew I was totally and completely surrounded by love.   I closed my eyes and prayed for some more raining on Sunday!

HANG ON…..WHILE RIDING THE ROLLER COASTER(S)

As anyone who is involved in any way with the world of Alzheimer’s, (or any similar situation) knows, there are constant ups and downs.  For the caregiver it is the constantly being on edge, walking the fine line of fear.  Fear of saying something that will set our loved one off in a rage, fear of not being able to communicate, fear of a UTI, which really messes with their mood and personality!  Fear of the sudden and inexplicable turn for the worse.

But the up side of this roller coaster ride, is hearing the pure and impulsive laughter and the bright glimmer in her eyes, as she is telling a funny story, a story that only she knows in her own mind, but is wanting to share it with me, and the joy of watching her eat without any fussing or complaining.

These are just some of the ups and downs of the Alzheimer Roller Coaster, but as I try to put this part of my life into some perspective, I realize that Alzheimer’s is just a part of the overall ride.  My personal life has to go on too, and it is a roller coaster ride in itself!

Hubby has been working a LOT of long hours out of town for about year.  Coming home for very brief weekends, never long enough to really take care of “honey-do’s.” Currently he is home on three weeks of vacation, and has decided the time is right to tackle the kitchen make-over that we have been “thinking about” for nine years. As with any renovation project, it always becomes much more involved than originally planned.

Our house was built in 1960 and still had the original wiring, (certainly not up to today’s codes!) and the insulation has long ago lost the fluff needed to do its job properly……. So the kitchen is totally gutted, I have boxes and bins stashed in both of the bedrooms, living and dining room. The stove, refrigerator and microwave are also in the dining room. Do I really need all of this stuff??? I will have to do some serious culling out, before putting it all back into my new kitchen.  Oh yeah, my bedroom closet had to be completely emptied, as it is the only entrance to the attic to do the electrical work.  So therefore all of my clothes are also draped all over the living room sofa and chairs.  I know it will be worth it, I have waited a long time for this!

On Saturday evening I went to Mass, due to the expected snow arriving later in the evening.  As I walked towards my car, I noticed several daffodils popping up in the yard.  I remember thinking, “They should be fine, we are only supposed to get about an inch or so of the white stuff.” We woke up this morning to nearly 5 inches of snow!  It was so pretty looking out through the window, at God’s beautiful work!  Starting tomorrow, the temperatures are supposed to be nearly 50.  Talk about a roller coaster!!

Hubby has been out there for over two hours clearing the driveway, I’m sure he would enjoy a hot cup of coffee when he comes in.  Where is the coffee pot?  Is there a flat surface, near an outlet to set it when I do find it?  Is it possible to find another clear flat surface for the toaster too?  Thank goodness for microwave oatmeal that comes in single serving cups!  I just might be able to offer him a good hot breakfast in spite of not having a kitchen!

What did I do today?  Tried to mentally plan and plot my spring vegetable garden, that I do intend to put out this year.  You know….the one that did not get out last year!

Just Breathe…..everything will be OK!

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