Life With Lewy: Real-live people.

Wednesday, January 28, 2009

Real-live people.

Just as I hit "Publish" on my last post, the doorbell rang and it was the UPS guy delivering us some flowers...in sympathy for my Dad passing away. They are from my Mom's sister and family who live in Sacramento. See! There ARE people out there who know how to be nice! (I'm telling this to myself...)
And it should be mentioned that the family that sent it have had some seriously tough times themselves lately...my Aunt Dody (my Mom's sister) JUST got out of the hospital a few days ago...and she found the time and even THOUGHT about sending US flowers? Beyond thoughtful and nice.
Not that I in any way expect that everyone need to send flowers...not at all...but I just want to say this....
SEE, You JERKS in NM...see how REAL people/family behave? Take a LESSON!

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Who I am and why I did this.

**********Disclaimer**********
Lewy used bad words, and when so provoked or exasperated, so do I. I'm not that great at sugar coating things, and some of my explanations may be graphic...so please...if you are easily offended or sensitive, do not read my blog.
******************************

I was and am the middle child; the manager; the advocate for the underdog; the black sheep; the one with the sharp tongue; the sucker-for-a-cute-baby; the one crying in the movie theater at the beginning-middle-and-end of a good love story/chick flick; but...I also apparently have a strange "Spock-like" way of being all too logical about certain situations where your heart would lead you astray. I love writing, creating, and daydreaming about the way things should be, versus settling on how they are.

My father had Lewy Body Dementia. I was the main caregiver for my him after my Mom died in June 2005, and until he passed on January 5, 2009. I have an older sister and younger brother, but I was the one taking care of everything...I just wasn't able to go on with my life/day without wondering and worrying if there was something else I could do to help him...even if it was to my own detriment, and most times, it was. Not that I begrudge my siblings for not doing what I did, because to be honest, it was hell. But that's how I'm wired, I guess. I was in no way trying to be some sort of martyr, I just knew I had to try to make it "right" for my Dad...whatever that was though, honestly, I still don't know.

I became immersed in finding out the "why's" of my Dad's disease after I saw it's name and description online while searching for answers about his strange behavior. Did he get it because he ate artificial sweeteners? Didn't like to read? Watched too much TV? Genetics? Am I next? Are my kids next? Was there a specific day this all started? A particular trauma or life experience that triggered it? A virus? Environmental? Karma?

The handful of years before my Dad's undeniable symptoms emerged were pretty rocky for our family, which may be part of the reason my Dad declined so rapidly. Papa, Daddy's beloved stepfather, died after quite an ordeal with cancer; during this, my Mom was diagnosed with cancer, went through treatment, but ultimately succumbed to it; I was diagnosed with and went through cancer treatment; My Dad's mom (Nany), died from some sort of Dementia (although she was a golden 91 years old!) and because of Daddy's new strange behavior and being one of his Power of Attorney's, I got the excitement of dealing with real estate agents, house floods, and cousins stealing appliances/insurance money while selling Nany's house in New Mexico (all the way from CA). Then, within months of Daddy's mom passing, his only sibling/sister died after a very long battle with cancer, Dad's strange behavior finally got a name and literally took over everything else in my life. These are not complaints or jabs at receiving pity...just facts. Of course there was happiness along the way. Absolutely. Sometimes it's just hard to fully live in/acknowledge those moments when you are neck-deep in paperwork, death and doctor's visits while Lewyville has a 10 foot electric fence bordering all sides...and you're watching everyone else have a life...while you are sleepless, twitchy, and all too aware of the growing black circles under your eyes. Or, that your hair and eyebrows have begun to fall out.

One thing I do know for sure now...now that our personal battle with Lewy has died with Daddy...is: that without my sarcastic nature and trying to find the humor in everything, I surely would not be here. I would have been one of those statistical 30% of caregivers that die before the people they are caring for. Lewy bleeds you dry and laughs in your face when you are at your wits end...so arm yourself...and fight back with insight, humor, knowledge...and patience.
P-A-T-I-E-N-C-E. It's the one thing I know I lacked a few times at 3 in the morning after chasing my Dad while Lewy cackled away, and I beat myself up for it for a long time...actually, I still think about it now.

I still do think everything happens for a reason, and sometimes we don't fully understand why we get what we get until we see it in hindsight...a lesson (Or two. Or 300.) learned.

I considered myself to be on a fast-tracked learning adventure that would hopefully, one day, bring me a "Master's Degree" in birth, life, love, death...and that hopefully along the way I'd find some answers...or at least know the right questions, before my own time was up...and I will hold on to that hair-brained theory until it is.

My purpose for this blog is not as much for educational/informational reasons as much as I want to show what happens to the lives of people affected by Lewy Body Dementia. But please, do check out the links I have provided to read about the medical and scientific information about Dementia.

Get SUPPORT!!!!!!

Look in your local paper, call up facilities, hospitals, your local Alzheimer's Association...I don't care how you find it, but GET SUPPORT! You need input and support from someone, or a lot of someone's, who are walking in your shoes. You think you don't need it, that you're handling it...until you get what you've been missing and an Earth-sized boulder is lifted off of your shoulders. You are not alone. Or nuts. Really!
I never saw myself as a "support group" type of person...I just handle things...I do what I'm supposed to do...I'm Superwoman...I follow through...I'm responsible...so why would I need HELP??? I imagined people sitting around a circular table, passing tissues, whining about their problems...my god, I was so wrong. Amazing people, STRONG PEOPLE, just seeking some respite, some input...VALIDATION from people who know what they're talking about, who've been there. It has been INVALUABLE. Yes, perhaps I am the youngest one there by 40 years, perhaps our lives are at completely different stages and we grew up in different eras, but my support group friends are the ones who have kept me SANE. They have seen, heard, and felt what I have, and have had to make the same heartwrenching decisions...they understand. They've seen how family members, friends, and even strangers will give you advice and opinions from all angles, but really don't offer tangible help. They've seen friends diappear because no one knows what to say or do. They've talked to too many Doctors to count anymore, most of whom know NOTHING about anything valuable. They've been up all night with a loved one who doesn't know who they are anymore. They've grieved the loss of their life with someone who isn't "there" anymore, and then grieved the loss of that someone altogether. These are strong people trying to help each other get through the day by affirming that we are NOT alone and that there is no right or wrong way to deal with this. Everytime I walk into that room, I feel relief.

Some useful links:
Lewy Body Dementia Association, http://www.lbda.org/

Alzheimer's Association, http://www.alz.org/

Great general info. about Lewy Body Dementia,
www.helpguide.org/elder/lewy_body_disease.htm

www.TheCareGiversVoice.com

MUST READ: "Finding the Joy in Alzheimer's: Caregivers Share the Joyful Times" AND "Finding the Joy In Alzheimer's 2, When Tears are Dried with Laughter" by Brenda Avadian.

And...I sure as heck don't know everything, but if you have any questions for me, please ask. If I don't know the answer, I'll do my darndest to help you find it. E-mail me at: lifewithlewy@gmail.com

Life With Lewy

Wednesday, January 28, 2009

Real-live people.

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Daddy, Finally Home

My Blog List

Grampa with all 3 of his Grandkids

Grampa and my little Dollies

Daddy in his "Hey-Day"

Who I am and why I did this.

Get SUPPORT!!!!!!

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