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WritingAfterDark

Blogs of Writer, Artist, Photographer, & Caregiver Joanne D. Kiggins

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Joanne has published more than 2,500 articles and was award recipient of the 1990 Woman of the Year for Beaver County, Pennsylvania, for her accomplishments and excellence in journalism and to the community. Her co-authored book, “Unforgettable Journey,” won fifth place in the Grand Beginnings romance contest. An excerpt from her WIP, “Unearthed,” placed her fifth in the Absolute Write Idol contest. Most recently, her essay, “Perseverance,” is published in the Stories of Strength anthology in which 100% of the profits are donated to disaster relief charities. Her most recent articles were published in ByLine Magazine, Writer's Digest, AbsoluteWrite.com, and Moondance.org. She has a monthly freelance writing column at Absolutewrite.com. Currently, she is the sole caregiver for her 85-year-old mother.

Saturday, January 21, 2006

Dementia/Alzheimer's--which word preference would you prefer?

Which word is used to describe the disease isn't really significant unless you understand the disease itself and its outcome. Whether I choose to use the word Alzheimer's over dementia does not change the end result. But events leading up to the end result can be changed if one takes a little time to educate himself about the disease and the effects it can have on the person with the disease.

Noun: Dementia - Mental deterioration of organic or functional origin.
Adjective: Demented - Affected with madness or insanity.

Noun: Alzheimer's disease - a neurodegenerative disorder, is the most common cause of dementia and characterised clinically by progressive intellectual deterioration together with declining activities of daily living and/or behavioral changes.

The paragraphs below are quoted from the Alzheimer’s Association and Alzheimer’s Disease Education website. My heartfelt expression of thanks for the information this organization provides for patients, families, and caregivers.

“Alzheimer’s is the most common form of dementia, a group of conditions that all gradually destroy brain cells and lead to progressive decline in mental function. If the individual has no other serious illness, the loss of brain function itself will cause death.

Dementia is a brain disorder that seriously affects a person’s ability to carry out daily activities. The most common form of dementia among older people is Alzheimer’s disease (AD), which initially involves the parts of the brain that control thought, memory, and language. Although scientists are learning more every day, right now they still do not know what causes AD, and there is no cure.

Today, the only definite way to diagnose AD is to find out whether there are plaques and tangles in brain tissue. To look at brain tissue, however, doctors usually must wait until they do an autopsy, which is an examination of the body done after a person dies. Therefore, doctors can only make a diagnosis of “possible” or “probable” AD while the person is still alive.”

Now back to my question at the beginning of my post. Dementia/Alzheimer’s—which word preference would you prefer?

I prefer to use the word Alzheimer’s because it sounds less demeaning. My word preference, doesn't change the disease or the ending result. Nor does it change what is in the best interest of the person afflicted by the disease.

And, once again, Words Do Matter, as do actions, feelings, and promises.

“I don’t ever want to be put in a nursing home. If I ever get sick like your dad did, will you keep me home and take care of me?” Mom asked.

“Yes, I will, Mom. That’s a promise,” I answered without hesitation.

Those words were spoken more than six years ago, during one of many conversations Mom and I have had over the the years, and long before diabetes and dementia took a hold on Mom’s health. It’s a promise I made and plan to keep, as long as I’m able, despite outside difficulties, because that’s the way I am—true to my word and my heart.

I’ve been taking care of Mom for sixteen months and have been living with Mom for nearly a year now. Though it’s heartbreaking to watch her mind fade away more each day, I wouldn’t trade this time I am spending with her for anything in the world. I’ve said before that I have always been a constant in my mom’s life. Her illnesses haven’t changed our relationship and it won’t change my love and admiration for her, or my loyalty to her.

She and my father gave me more than life—they passed to me their values, taught me responsibility, and showed me loyalty. They stood by me regardless of what I may have dealt with throughout my life, and they constantly encouraged me when times were tough. They loved me unconditionally regardless of the mistakes I may have made in life. They taught me that one does not always get what one wants, and no matter what trials and tribulations were placed in my path, I was to continue to reach for goals, fight for what I believe in, be the best person I can be, and let nothing and no one stand in my way. I believe I’ve learned well the very valuable lessons my parents taught me. My parents instilled kindness and generosity into me. Those lessons filled my brain and my heart. Fortunate or unfortunate, I’m not sure, but I have my mother’s let-it-go heart and my dad’s ready-to-kick-ass temper, and both kick in when I see things happen that shouldn’t. Which basically means—I take a lot, let things boil inside me, and when I decide I’ve had enough, I come back fighting with perseverance and fortitude.

Mom and I have enjoyed years and years of a wonderful relationship; it is a relationship that was never supposed to happen. She was told she could not have any more children. Ten years later, I was born.

What if I’d never been born? Better yet, “why” was I born? That IS a question I have asked throughout my entire life. What purpose do I have on this earth? The answer has only become clear to me recently. I have been a caregiver my entire adult life. I believe that is my purpose, and when my purpose is fulfilled, my time will expire.

Mom’s told me time and time again she doesn’t know where she’d be if I wasn’t in her life. My hope is that I will live long enough that Mom will never need to worry about that.
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Make me smile. Leave a comment...


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4 Comments:

Blogger Jeff said...

I think I told you I lost my mom this past August from Alzheimer's disease. She was only 70. She was the mother of seven children and she loved each of us equally. I couldn't have chosen a better mother. Thank you for this very nice post. It made me think of mom and smile. :)
The way you are caring for your mother is a wonderful. :)

1/21/2006 10:07 PM  
Blogger Joanne D. Kiggins said...

Yes, you did, Jeff. My heart aches for you. Thank you for your kind comment. I'm happy my post gave you good thoughts of your mom and made you smile. My best to you.

1/21/2006 10:38 PM  
Blogger Ray Wong said...

I have tremendous respect and love for you Joanne. It's a tough time for you but I know you will prevail, and you will look back on this part of your life and smile (among tears) that you've done good, and the time with your mom, however difficult, is worth it and precious and something you could hold dear to for the rest of your life. And now, even if the going gets tough, you know in your heart that it's a good fight and you wouldn't trade it for anything. You have that fire in you.

It warms my heart to see the kind of relationships you have with your parents. They're lucky to have you in their lives. And you are lucky to have them.

I've had a love/hate relationship with my parents all my life, but as I age, I've learned and grown to accept everything, good or bad. I know that I love them and they love me, and we're connected in this world for a purpose. I know now, through them I've learned many lessons -- to have compassion, to love UNCONDITIONALLY, to trust, and to do right by the people I love. There really is now higher power than love. Through the hate in the past, I see more love in my life now than ever before. And I think I'm blessed.

We always question our purpose in the world. I still don't know mine yet -- but in a way I do... sometimes I feel that I'm here to learn, then teach... I don't know. I have absolutely no patience, so how can I be a good teacher? I am afraid I am not a good caretaker either... so what is my purpose? I don't know yet.

But Jo, you're an incredible person and I am so glad that I've met you. It's one of the best things that have happened to me in the past year. And I hope (no, I know) we'll both live long enough to have a long, wonderful friendship and will be able to look back and say, "Hey, what the eff were we thinking? Here, take a sip of this tea, you old bag." And we'll laugh.

I plan to be in your life for a long, long, long, long time. And you should make that plan, too.

Love,
Ray

1/22/2006 7:19 AM  
Blogger Joanne D. Kiggins said...

Ray,
Your heartfelt post has rendered me speechless, and we all know that is an event that should be marked down in history books. When have I ever been at a loss for words?

Thank you for the kind comments you’ve made. It’s meeting, in person, people like you, others from Absolute Write, and good people in general, and forming friendships that will last a lifetime, that I cherish as well as the relationships I’ve had with my parents. There’s a lot to be said for the good people in this world. It’s those people, who aren’t afraid to speak their feelings regardless of how someone may interpret what is said, who I will always hold near and dear to my heart.

My heart goes out to you and others who haven’t experienced a wonderful parent relationship as I’ve had. I can’t imagine how that must feel. I can only say that it gives me reason to cherish these moments even more.

On the lighter side of this post, what in the world are you doing up at 7:00 AM? Either you were up all night or you’ve changed your schedule to get up and enjoy the sun before morning has drifted away. ;)

You are a writer, Ray. A very good writer and a very good friend. That is one of your many purposes in life. I look forward to that cup of tea, but in case you didn’t notice nearly a year ago…I’m already an “old bag.” LOL It’s comforting to know that you plan to stay in contact with me and be in my life. True friendships are far and few between. Now, go finish that next novel, my friend. I “plan” to watch you on Oprah, and while you’re there, put in a good word for me. ;)

1/22/2006 12:59 PM