A Walk in the Dark: A Personal Account of the Alheimer's Journey by Cynthia L. LaBuda

By C. L. LaBuda

About the Author
The author resides in Ohio with her husband, and was fortunate to be able to retire from her profession in order to complete the actual walk with her father. The actual walk for C. L. LaBuda took about five years. Upon completion of that journey, she set out on a new quest, from caregiver to advocate. After doing some research into various aspects of support organizations, she settled into a position on the board of a local Alzheimer’s Network, hosting events and leading caregiver support groups in three cities. It was not until several years later that “A Walk in the Dark” became an idea. Because, what better way to prepare someone for a journey, than to give them a book which details the path and the challenges they face? She continues to volunteer to this day with the hope of making the journeys of others easier.

• Language: English
• Publisher: Dorrance Publishing Company
• Release date: May 9, 2024
• ISBN: 9798886836288

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The contents of this work, including, but not limited to, the accuracy of events, people, and places depicted; opinions expressed; permission to use previously published materials included; and any advice given or actions advocated are solely the responsibility of the author, who assumes all liability for said work and indemnifies the publisher against any claims stemming from publication of the work.

All Rights Reserved

Copyright © 2024 by C. L. LaBuda

No part of this book may be reproduced or transmitted, downloaded, distributed, reverse engineered, or stored in or introduced into any information storage and retrieval system, in any form or by any means, including photocopying and recording, whether electronic or mechanical, now known or hereinafter invented without permission in writing from the publisher.

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A Word From the Author:

In the beginning, I began writing down all of the events making up this book. Interestingly, there was never supposed to be a book at all, just a collection of experiences and memories I could revisit after the passing of my father. It was actually a form of therapy prescribed to help with the anxiety and grief in my life at the time.

Not until much later did I start to feel that a book about my journey could provide information and insight to individuals who were destined to walk a similar path.  So, I decided to publish my journal as a sort of self-help tool.  It is not a clinical book; it relates more to the emotional and spiritual aspects of dealing with a terrible disease and the resulting transition of a loved one.  It shows that if you have faith and are willing, you can transform the worst possible situation, into a wondrous time of love and compassion for you and your family member or friend.

I am sometimes critical in this book, but it is in no way an indictment of any person or entity.  It is not my intention to malign, degrade or defame any individual or organization involved with or related to any of my own experiences.  I am only putting in words the emotion and feelings I experienced at any particular moment in my Alzheimer’s journey.  I apologize in advance for any ill-feelings or bitterness caused by my words.  But, that is just how it was.

Hopefully, this book will help prepare you for the challenges you may face.  Really, nobody gets it perfect.  So, no matter what the outcome, take pride in knowing that you did the best you could with the situation you were given.  God bless you for your work.

How can you walk in the dark when you don’t know where you’re going? I have found my answers stumbling here and there, wandering endlessly through total darkness, but, in return, I received the holy grail of spiritual growth. All of my why’s of life thus far have been answered because one doesn’t usually get to the good before walking through the bad. Maybe it’s to show us to appreciate it more when we finally get to the light.

June 18, 2015

Today is a pizza party for the unit. You never know when the eating will stop. When you walk into the unit, the feel is even stronger. Seems as though all patients shoot things out of their mouths that seem as though they are giving messages from the spirit world. It’s always a treat to see if there is anything for me to know. The reality of this is these people cannot, for the most part, construct a sentence, but if spirit has something to say, it comes out very clear and audible. No mistakes there. But you have to be open and really pay attention. Otherwise, it’s cubbidy, cubbidy, cubbidy! This is the language Dad would use to fill in the blanks when he couldn’t find the words to say.

Another benefit of Alzheimer’s is this disease gives you plenty of time to achieve whatever needs to be accomplished, be it getting ducks in a row, repairing relations, growing in so many ways. It teaches you what you need to know from that person. Sometimes it’s over and over, sometimes just a spirit, so paying attention to them is key.

It seems to me that the turn this has taken is one that HE finally sees what is ahead of Him, and he is liking what he sees, resulting in song and dance….

Going to school. The bed is being made by his mom/sister. Birds seem to be making frequent visits: two doves on the roof, hummingbirds in my face, a bird in the garage while updating his relative.  And more out on the roof. There is a lot of animal activity. Even our pets, Luca and Sarge, look at me differently. Energy is strong. I seem to have extra-heightened senses. His group is definitely coming closer. Seems as though this energy is really there surrounding him/me/us? Is seeing his relatives what Dad needs to complete his physical journey? I find this process exciting now … to kind of get insight of what I believe to be his next existence. It feels like a preview of the movie of my father. The info is coming quickly to me.  Living in the moment. Arriving at the facility, I’m feeling very strong. Positive energy—it makes me float. I showed him pictures of his mom and dad. He instantly broke into tears. He knows what’s going on … he is still caring deeply about my well-being. Are you okay? he asks me six weeks or so prior to his rebirth.

He is going from nappy to waking up bouncing in the chair. Still apparently mirroring what he is seeing? One of his many caregivers said the day he realized he couldn’t stand anymore, he cried, but he realized it. He still seems to have a very peaceful existence, but a lot of it is him resting finally after years of anxiety—to the moon and back!

Today went well. The Staff gave him a bath and shined him up nicely. Had a nap and dinner. Then the autistic behavior began … I was there from 11:20 till 4:30 today. No meds in this timeframe? Should I call the nurses to inform them? Yes, I should, and I did.

Today, one of the residents said something that involved my brother whom she met only once. The verbiage was not understandable other than she said his name loud and clear.

By 4:30, one staff member showed up for shift, not one of the regular posse of the facility. This person was pulled from another area of the facility. She was thrown into this shift, so chaos ensues, mostly because the other staff member was at least thirty minutes late when she arrived. Another family member and I served dinner to the residents. They suggested talking to the administration at the facility. I will try to get answers somehow. They are giving only behavioral meds at night. I will talk to the case worker tomorrow.

Great point of the day—Dad popped me on the ass! Wherever he is, it’s playful and puts a smile on my face! 6:30 p.m.—I’m hearing doves on the roof of the house. The floaty energy I had this a.m. upon arrival at the facility has left me. The place/situation sucks the life out of me, but, on the flip side of the coin, the absolute, most beautiful spiritual/deep/meaningful/ soulful snippets happen. I’m tired. I have got to rest/sleep/meditate/pray, etc., anything to feel the way I did upon arrival this a.m. This was one day in five years. They are all like this for the most part. If they aren’t physically, they are mentally draining. I’m still writing because my head is still going.

6:47—Okay, back on path. More relaxed to think this is an example of the process that my mind goes through … just to manage this. I know my brain works in overdrive, and I micromanage when it comes to the folks, or loved ones, although the focus is on him in totality. This is how my brain works.

June 19, 2015

I got up to voices at the nurses’ station and the morning update; I have to start paying attention to their names. Things are rolling forward, but I hope I can handle the pace. It’s never-ending, but the feel of this has changed. I finally feel my guts start to relax just slightly, but don’t trust it because in a New York minute, it will for sure tighten, be it a real event or something my mind has been trained to do in the process of Alzheimer’s. I feel angry energy today, too! Even in the truth, the anxiety of what’s to come feels like static on the TV, but comforted static now! I think that is the difference! I know I can make it to the end of this now.

Conversation with the bathing team: First she bathed him. After his bath, I went into the room, and we were chatting about him. I was curious to find out that what she conversed with him (alone) was accurate. She said he told her about his old business, and he started to cry … so he knows all about everything. Not from me … this tells me that he is getting this info from a higher power, unless one of the boys told him; this is highly unlikely. To me, the spirit or Mom is communicating with him. I can say that this seems to be a pure, real, higher communication than I have experienced with earthly beings. It’s what gives you goose bumps and makes tears come unannounced, or makes your hair stand up, or creates that floaty feeling….

This energy is amazing. This is a gift that my father has bestowed on me through Alzheimer’s. I always dreamed of tapping into this energy, and didn’t know how. At this time, it seems to be easy for me. My desire to grow spiritually resided in him through this disease. It is a gift for me. So many questions have become answered through this disease. I read a lot of info on this in years past. This seems to have pushed me forward in my own spiritual growth, facing hurdles I never expected, or even knew that I could jump. So, there is another gift—confidence. Strength. Tenacity. Perseverance. Determination. Feels like being the human cage reminiscent of Mom’s transition….

My prayers all along have been, Please, God, help me to stay and be healthy at least till he passes, because many a day I didn’t know if I could last. The bond between us is one of a triple soul. Although I have not ever heard of this, I have read of twin souls, but this seems the feel of it. At times, through Alzheimer’s, Dad was holding on to me for dear life. It felt like he was taking me with him. This grip feels like it is loosening, and he seems comfortable with it most times.

It’s 11:30 a.m. I have to plug into my own realm. Spent time with my awesome husband, so patient, selfless. God has blessed me with him! What husbands do for their wives! This is a blessing. Okay. Can’t stop … I knew the challenge as I have grown spiritually. My big hurdle was how do I balance metaphysical/physical? I always felt the peace through the metaphysical and wanted that so much to be my existence. How do I achieve this euphoria and function on a daily basis? The human side of existence is emotionally, physically exhausting, for the most part. What gives me strength through this is within me, because rather than engaging in support for Alzheimer’s caregivers, most people have dropped off.  They can’t hold up to having the endurance for the long haul. I believe this to be another gift from Papa Joe. Amazingly, all of this concerning my growing spiritually was NEVER anything I talked to him about while growing up. This was mommy/daughter talk. How would he know that my biggest leap forward would have been his to teach me? He never knew any of this.  This is very powerful and magical.  He showed me on June 18 when I showed him a picture of himself at approximately thirty-five years old and he knew himself.  He still says I’m pretty! referring to himself.  I Love it!  I need to return to the physical world and be a domestic goddess of housework! Ha!

One day Dad asked to smoke! Ha! He quit when he was thirty-eight years old. Love to see that! Well, maybe not. My only regrets thus far: he seems to be reviewing his life here on earth. Mom and Dad wanted to die together, and that could have happened, but the intervention of man stopped that (me and his pacemaker). If he did pass at that time, the lessons I received to grow spiritually would not have had the magnitude that they did. I never actually told Dad that he had Alzheimer’s. The minute Mom died, he looked at us and said, What just happened? From that point on, he never returned. They had an admirable bond, one that John and I have strived for in our marriage.

In the event of my death…. Since I was a small child, Dad used to always refer to it when he talked about his passing.  He used the phrase, In the event of my death. probably because he lived his life thinking or preparing for him passing before her; so this was his way of directing me or us about what to do with all the assets and how he wanted it to work out. For many years, he used this phrase that would instantly bring me to tears. Part of the time, he meant it, and part of the time, he was looking to razz me and get that very reaction. He was definitely a scorch. This overused phrase, however, was yet another instruction or lesson for me to grow and learn by.  It was his way of preparing me for what was to come because this journey would continue to be eventful. Another phrase he used often whenever I had a situation in my life which needed guidance was, Use the brain God gave you. How ironic! Alzheimer’s melts the brain, thus an indicator of our future.

Dad also taught me the value of letting go. Emotionally this took a while for me to grasp. His way of dealing with emotional pain is, I guess, a defense mechanism: he just forgot, or is this the work of the disease? God’s way of protecting him, I suppose?

June 20, 2015

Tomorrow is possibly the last Father’s Day with my dad. He doesn’t know—at least in the physical realm. He lost sense of time long ago, but when I look back, every day was Father’s Day to me. He was such a great guy. We had a good relationship. Significantly, Dad always prepared me for what was to come; and this journal—like the journey itself—shows that.

I saw him today, and he said Mom’s over there.  I was so excited but not sure he meant mine or his. Very interesting. Just happy that he sees either or both! Sometimes I have thoughts of what my last chapter on earth is going to be like. There is a 50/50 chance I might get this. I hope if it is my destiny, that I do as good a job at teaching people about how to address this disease as Papa Joe has. I hope all the angels that have been around have learned just one thing from Dad and his disease because, we have had some interesting events through this with caregivers, etc. I have really grown through this, too. Thanks, Dad!

The thing I have learned is that the best remedy I have found for the grief experienced about/with Mom resides in our memory. How is this so with Dad? He can’t tap into memory. He has lost the ability. This, too, is ironic. Why wouldn’t it be that he could, or would be able to process this?

There are so many of these questions that run through my mind. At times, I wonder whether my curiosity about afterlife is part of what is so unheard of. It is hard to find people to share this with who don’t look at me like I have three eyes. Why not? It’s a natural thing for me to address: the mental state as part of the whole being. I believe we come from there, and there is a natural draw to be in that state again. I read this in my travels, and it stuck with me. We are spiritual beings living a physical life.  I would like to share the Confirmation letters written to me when I was fourteen years old.

My dearest daughter,

I am so happy you have made the decision to receive confirmation. I am sure you will always feel the Lord at your side guiding you and directing you in all that you do. Remember that with his help nothing is impossible. I hope all your dreams and wishes will be fulfilled and that you continue to grow and develop into the beautiful young lady that you are starting to become. We love you very much and want so very much for you. When we argue and you disagree with my decision on things, it isn’t that I want you to be unhappy. It’s because I love you and want the very best for my one and only daughter. I try very hard to be the very best mother to you and your brothers, but I’m sure I’ve made mistakes. With God’s help, I hope they aren’t serious mistakes. There are so many things I hope you understand about life and the relationship of God and family. It’s difficult for parents to know the right way to handle all situations that develop in a family, but if I’ve goofed, I hope you still love and respect us as we do you. With all we’ve been through, I hope and pray it has no adverse effect on you, and that you always remember how important your family and religion are. Be a good girl, darling, and remember we’re always with you and want the best of everything for you now and always.

All my love forever, Mom

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Dear Cindy,

I want you to know how refreshing and touching the last few weeks have been for me, watching you prepare for your Confirmation. This is a great step into womanhood and your long walk with God and life. You have displayed to Mommy and me that you love your religion. That means very much to both of us. This long walk, through life without God and us could be very lonesome.

The little things you have done recently and the enthusiasm you have shown doing them bring me much peace. I love you very much and I will always be near to help guide and advise you the best way I know. It’s the least I can do for someone that has so much love for God and parents.

May God bless you always, Dad

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They had given me directives for the success of my life. How do you beat that?  They always told me your parents never lie to you. This is what I lived by.

June 21, 2015

Dad still has the mighty determination to protect his daughter. When asked how he was today, he said he was feeling good!

Processing unresolved emotion. The way I believe illness occurs is it is simply unresolved emotion. At least so far in my experience, but I’m still trying to learn where this Alzheimer’s comes into play. I have received some of this information from Mom. He was difficult to communicate with on this level. You know mighty men don’t talk of emotions, especially that generation. His disease has had a lot of emotional/behavioral characteristics to it compared to what I have been exposed to patient-wise. Dad, as far as I can remember, did everything right concerning his health (physical). My mother (with me) was a real advocate for mental health. She encouraged me to have a real understanding and compassion for those who had trouble in this area. So, I did and spent a lot of time developing emotionally and really learning about myself and being true to myself when something was bothering me. Let’s fix it over a cup of coffee. By the time the coffee cup was emptied, we figured a fix for what was amiss. This was the kind of relationship we had. There was nothing a good cup of coffee/conversation couldn’t fix.

I don’t know if Alzheimer’s is just a bunch of unresolved emotion that he couldn’t express. Mom said it’s like trying to get blood out of a rock! When the disease started and his speech was impaired, he then couldn’t express except through behavior. There are and always will be questions unanswered about this. The men of his generation did not express or address this facet of the human psyche. I always wished I could be in his brain for fifteen minutes just to get an understanding of how this Alzheimer’s was affecting his eyes, ears, mental capability, and how he perceived things, but that had to go by the wayside and leave it to wonderment … be careful what you wish for.

Growing up I always—for a very long time—was petrified of losing my parents. I couldn’t conceive of the idea of being here without them. What value would my life have without them? I desired to be with them for eternity.  All of life was right with them in it!  I have learned, as well, that they will never leave me—only in the physical.  I’m anxious to experience when Dad finds out that he, too, can communicate! I’m imagining he will be a hoot if it’s anything like Mom’s communication with me now.

They were an awesome couple in my eyes. Great parents. I’m sure that through their deaths I will still be learning the things they need me to learn.