Raising My Parents

By Carol S. Byrne

Close your eyes if you will and picture pieces of your life not fitting together. You struggle to find that one piece to make sense of a fragile, confused, distorted mind. Over and over you try to engage your memory only to find yourself, once again, at the starting line. This book, which consists of extreme journaling, is about the author's experiences and real life suggestions to deal with family members, friends, or possibly yourself falling into the abyss, so to speak, while trying to cope with the sometimes maddening disease, Alzheimer's/Dementia. It is explained in detail in the book, so the reader can easily understand each without confusion, and use the successful techniques she passionately suggests in her experiences. It further relates how delicate the mind can become, like newly blown glass. So there she sat one glorious intoxicating, beautifully sunny day in Lake Geneva, Wisconsin, looking at the magnificent, tranquil waves hitting the shoreline. It is here where she decided to start her journey, although painful as well as exhilarating, so that one day her words would be shared with the world. Writing about this time in her life through her extensive journaling was not only a catharsis for the author, it also lets the reader look through her eyes to fully understand the most intricate, intimate, and engaging experience of a lifetime. It brought her closer to her parents than she could ever have imagined, as it will give those who read it the same love, peace, knowledge, and coping skills one will truly need. And now the journey begins . . .

• Language: English
• Publisher: Page Publishing, Inc.
• Release date: Jan 9, 2019
• ISBN: 9781641386234

Book preview

June 14, 2009

The sun, fresh air, cool breeze, soft waves, my sanctuary, Lake Geneva, Wisconsin. How do I begin today to write the words I still need to express, to explain the life of my parents’ dying piece by piece, and there is not a damn thing I can do about it! I decided to share a beautiful story of two wonderful, yet slightly flawed individuals, who lived life to the fullest and made me who I am today, fiercely independent, a take charge person, a lover of dancing, thanks to my mom, with a strong dose of compassion, thanks to my dad. By sharing my story, hopefully I can help many of you going through taking care of those with Alzheimer’s/Dementia sufferers and dealing with many of the situations I have learned so gracefully to handle with an abundance of love and patience.

My Mom’s Story

Iremember her always cleaning and worrying, unfortunately she never passed on the cleaning gene to me, sometimes a strong opponent against domesticity.

Yet her love of certain passions that she passed on to me include dancing, eating out, and just having fun whatever you do. Also, have a great Italian friend who can cook fabulously. She was strong when healthy, caring, and when I was sick there came the chicken soup. I thought this was a prescription drug only because it did cure all. Mom was the safe place I could share my hurts, thoughts, and fears. She would be there to listen.

So what happened? Cancer happened, that horrific demon. First skin cancer, then a kidney removed, bladder cancer, again surgery and treatments—twice BCG treatments to be exact. Brain tumor, then Dementia, and Parkinson’s set in. Why?

With every struggle I was there to cheer her on, Go, Mom, go, like there was a big prize at the finish line, and yes there was, your life Mom. We played Bingo plus Wheel of Fortune in the nursing home. I slept overnight holding your hand screaming in my head, This, too, shall pass. We overcame each physical obstacle thrown in our way, yet I saw the slow demise of a happy person replaced by a more complacent tired one. I still saw that one amazing smile when her sister Dorothy was mentioned. Now came the worst nightmare of all the tragedy, the slow death of a brain—Dementia paired with Alzheimer’s plus Parkinson’s disease. Wow! Yes, there is a difference between Alzheimer’s and Dementia. The first is loss of mind and forgetfulness. The second is a world of distorted reality.

Give me the physical any day, but the mind going, no! Where is my mom? The mind, a shell of itself, lost in a sea of confusion, yet she looks like my mom.

At first the shock and disbelief turned into a frenzy of research, and seeking knowledge became an obsession. Books! Articles! Anything to arm myself with the ultimate cure or to help me understand this happening. How to cope! Bingo and Wheel of Fortune were replaced with blank stares. Funny story, at the nursing home when playing Wheel of Fortune, my mom kept giving the woman next to her the answers. I whispered to her, Stop, we can win. She said, What do I win? I said, A banana and orange. She said, Let her win. As time went by, smiles faded, laughter subsided. All I found in my research, or rather mostly what I found were definitions void of experience and compassion. Some helped tremendously. Now, I am going to tell you what really helps. As I watched my mom being taken to a rehabilitation portion of a nursing home on January 1, 2009, because she could not walk, I did not realize she would never come home. Months later the reality hit me. Here is what my experience has taught me: live in their world, see what they see, live what they live, because it is beautiful, like the psychedelic phase of the 70s without the drugs!

My friend Susan is still laughing when I related to her the episode of my mom recovering from surgery, and she said to me, Do you see the flying squirrels at the window? My dad who also suffers from mild Alzheimer’s said to me, Do you see them? I could have screamed loudly, "No, there are no flying squirrels by the windows. I simply responded to my dad and mom, Yes, I saw them, and to my dad I said, I think you missed them by a second, they flew so fast, and they were so beautiful!" Both parents were satisfied since now they knew that if I saw the squirrels, everything must be okay, and no one in this room is certifiably crazy! At this point, I had not come to terms with the prospect of my mom developing Dementia, instead I thought it was the result of anesthesia after surgery.

Again I say live in their world. While I watched the movie The Notebook for the fourth time, I finally realized how much my dad loved and still loves my mom to no end, and how fragile, yet alive my mom still is! It is all perspective and perception. I find that by confirming what my mom sees and talking to her in a normal fashion, even though she is lost most of the time, helps myself and her. There are times of clarity that I hang onto like a lifeline, no matter how brief they may be.

Do you despair? Do you let depression consume you? Or rather, do you try to maintain some level of normalcy amongst this ultimate one flew over the cuckoo’s nest reality.

While watching the movie, A Brilliant Mind, I wondered if the main character was mad or maybe just different. Maybe his world was okay! Who are we to judge what the mind creates? My mom created a new dimension, a new world for me to see. The other day I traveled with her to Vegas (in her mind), as we played Bingo in the nursing home. We won a $1.00 and a candy bar. I felt like we were at a poker table in Vegas. Traveling with someone else in their mind can be extremely liberating. All I needed was a Martini and Frank Sinatra singing Vegas Style. I love you, Mom!

One of the funniest moments is when my mom said, Come up to my house, which was her nursing home room, and I will cook you something to eat from scratch. I said, Now you are deciding to be Julia Child in the kitchen? Then she said, You’re right, they cook for us so let’s order out. That is the mom I know, and I love, cooking in our home, something to be done not enjoyed.

As she lay asleep one Friday afternoon, I rubbed her hands and thought, Mom, now it is my turn to take care of you: the fragile shell of a woman, who taught me to love dancing and never stop until you drop.

For those of you that get frustrated and angry at loved ones, because their mind is not functioning as yours, let your mind be their mind. Think and feel as they do. View them as children first discovering the world through make believe. My mom was a playmate that helped me be a child again. Do we think a two-year-old is crazy when they talk to invisible playmates or see monsters? Maybe we all revert to that from which we were born. This is how you can help your loved ones