Saturday, May 9, 2009

WHCA and Alzheimer's and Mom's Day weekend

Some seemingly unconnected events occur this weekend...

The White House Correspondent's Annual Dinner will be broadcast live tonight. MSNBC is starting coverage at 9PM Eastern Time. C-Span is supposed to be covering it, but my local guide is being vague about it. It'll be shown on C-Span online beginning about 8PM ET.

Click here for the official WHCA site. Wanda Sykes is the entertainer this year which should be interesting since she "came out" last year and fought to defeat Prop 8 in California. The WHCA site has links to access C-Span's coverage of previous years. Recent past entertainers have included Craig Ferguson, Stephen Colbert, Lewis Black and Al Franken. Although Colbert was famously funny, it was the first time I'd ever seen him nervous and sweaty.

Sunday is Mother's Day! If you are not spending the day with your mother and/or your children, then I hope you celebrate the day with complete joy, focusing on good family memories. Mothers are special, no matter what your specific relationship with yours was. HAPPY MOM's DAY!!!

On Sunday night, HBO will begin The Alzheimer's Project , a 4-part documentary by Maria Kennedy Shriver. Maria's father, 93-yr old Sargent Shriver, suffers from Alzheimer's Disease. He no longer recognizes her or remembers that he was the first director of the Peace Corps. In fact, he no longer knows what the Peace Corps , established by JFK in 1961, is. In addition to Alzheimer's impact on families, the program will explore the medical and scientific aspects of the disease.

photo: mom and dad in the 1980's...
Now you might think this strange, but I think Mother's Day is the perfect day to begin watching The Alzheimer's Project! My own mother was afflicted with Alzheimer's and died 11-yrs ago at the age of 68. A once vivacious, personable and humorously gifted woman, still youthful and vigorous at the onset, she suffered excrutiatingly frustrating mental decay for years, losing every part of her personality by the time of her death.

At the beginning of her decline, my mom would say things like, "my mind, I can feel it going." At first she got angry, then she forgot to get angry. The family attempted to joke with her about her forgetfulness until one day it became obvious that she didn't even know what she had forgotten. Her once wide world contracted to her house and yard with my father and brother providing daily care. Even then, she managed to wander away late one night, wearing only a thin nightgown, after my dad had fallen asleep watching TV on the couch. He searched everywhere in the house and yard for her, walked around his neighborhood waving a flashlight calling her name and had just decided to call the police when he saw a spectral figure gliding toward him down the middle of the road. Yup, it was my mom wandering around the dark neighborhood, her thin white nightgown blowing in the breeze! She had no idea where she was or how she got there. In fact, as he guided her toward safety, she asked my dad what HE was doing out in the street! After that incident, he installed childproof doorlocks that her alzheimer-brain could never figure out.

Most of our final family get-togethers revolved around mom asking the same questions over and over (and over) for hours (and hours and hours)! We were advised to answer her as if every time she asked was the first time. This was supposed to help keep her from getting too anxious. Anxiety is a rarely-mentioned side effect of Alzheimer's. On some level, her brain was still able to worry over things. She did this with a vengeance, having panic attacks that lasted forever since she lived totally in the present moment. Her being unable to sit still or sleep normally was a real challenge to family home care. Afterall, when are the care-givers supposed to sleep or even just go shopping and take care of everyday things when the patient requires round-the-clock vigilence?

Toward the end, when she didn't recognize most of us, my mom was talking to pictures in magazines as if they were her friends. She couldn't go to the bathroom by herself because she was afraid of the "old woman in there" (glimpsing herself in the mirror). She thought my brother was her daughter. She thought her husband was her father. She thought her granddaughter was her sister. But she always recognized her tabby cat!

During her final death coma, mom became verbal for a moment and announced, "I don't want it!" -- I have no idea if she meant Death or Pain or what. She then looked right at me and asked, "Are you real?" ... Those were her last clear words. Such metaphysical questions from a person whose mind has turned to mush!

Although she technically died of ovarian cancer (without realizing she was even ill), my mom's mind was already dead. If it hadn't been for the cancer, she was otherwise so physically healthy, she would've shortly reached the total vegetable stage. For families who don't have the resources of Maria Kennedy Shriver or Nancy Reagan, that stage brings heartwrenching problems for which there are no real solutions. I do hope The Alzheimer's Project program on HBO will be addressing these.

Many baby boomers have been in denial about Alzheimer's for decades. Until you go through it with a family member or close friend, it's hard to imagine how awful it is. It is NOT just a case of cute forgetfulness. As the baby boomers age, we are looking at 1 in 8 of us being affected. While we all hope for a medical break-through, until then, we live with the real possibility that we or our loved ones will become prey to this mind-destroying disease. I wonder if many people have the same attitude as I do ... that once you've seen what Alzheimer's does and without any real way to combat it, it reinforces why we as a society need to provide more meaningful end-of-life alternatives ?!?

And so it is, on Mother's Day I find myself thinking about her a lot ... sometimes it's like my mom is still here when she isn't here ... which is fitting because for her last years it was like she wasn't here even though she was. I can still visualize and hear her laughing -- she always laughed with her whole body. Maybe that's why I'm so looking forward the White House Correspondent's Annual Dinner tonight! I want to hear people laughing ...

****OMG, big PS ... I just realized in that pic, my mom is the same age I am now! Yet she was still vibrant and happy, totally oblivious of the mental deterioration that would take hold of her brain in a couple more years. If you click to enlarge the pic, you'll see what I mean. Scarier than my dad's leisure suit?****

11 comments:

Slots Around the Clock said...

Couldn't have said it any better myself. Until you've been through Alzheimer's (especially with a parent) there aren't enough words to express the impact it makes on a family.
It's been close to 2 years since my mother passed and I've been thinking of her a lot this weekend especially.

Annette said...

What a tribute to your mom. It's obvious you loved her very much. You have many good memories and will always have them. Hang on to those and keep them close.

Happy Mother's Day to you, D.K. Thanks for sharing this with us all.

Take care and enjoy the day best you can.

D.K. Raed said...

Slots:
you look familiar. so sorry to hear about your mom. not that you don't think about her everyday, but mom's day is an especially poignant time to remember.

Annette:
I was hoping it wasn't too much of a downer to remember my mom in this way. I'm very interested in the Maria Shriver special tomorrow -- just set up the DVR which found 5-parts to record.

D.K. Raed said...

*****Quick note about the WHCA dinner tonight. I laughed my ass off when Obama pointed out Boehner's tan is not a color found in nature. Wanda is wonderful; she really spoke her mind, sparing no one. If you missed it, I'm sure it will be posted many places online, or you can try c-span.org/whca

Mauigirl said...

Wonderful post about your mom. I enlarged the picture to see her better - she was lovely.

My mother-in-law has Alzheimer's Disease so I know what it's like. My dad had it in the end as well (after he was about 89 or 90). My mother-in-law got it in her mid-70's and it has been a very sad progression to watch her go downhill. She was here for Mother's Day (she lives in a nursing home now but Dad brings her up to our house a lot). She still recognizes us although I doubt she'd be able to say our names. My father-in-law has to feed her (or an aide does if he's not there for one of her meals). It's so sad.

Fran said...

Hrumph! My well thought out post just went to the ether.

I thank you for sharing your experience & happier memories of your Mom, pre disease.

My Mom is a few years into this disease, and I hate watching the deterioration. She still recognizes me & my voice & the family, even though she struggles sometimes to finish a sentence, or get the words out.

As for the Press Corps, Wanda Sykes was firing on all cylinders & had he laughing big time.
Loved the remark about the Obama's thinking they were moving into a new house, only to realize it is a "fixer". And that people were giving him a hard time about not getting a rescue dog, when he adopted a country that had been abused by it's former owner. That & the giving Texas to the Queen of England for a gift.
She was great.

D.K. Raed said...

MauiGirl:
wow, you have really been and are still going through the Alzheimer wringer! It is sad beyond words to see how A.D. robs a person of their very essence. Hope you get to watch The Alzheimer's Project on HBO this week. I watched the 1st one tonight. It really captured something that most people don't think about -- the fear and anxiety that A.D. sufferers go through. There was even a woman talking to another woman in the window, but it was herself in the mirror -- very similar to my mom!

D.K. Raed said...

Fran:
I am so sorry for what you are enduring with your mom right now. My mom was actually better on the phone than in person. Maybe it helped to not see her daughter when she no longer looked like the little girl of memory. There were many times on the phone that she could almost pass for normal ... until she'd get stuck in a loop asking the same things over and over. There has to be a better solution once everything that constitutes a person's individuality is gone. Kurt Vonnegut's "Monkey House" comes to mind!

I loved Wanda at the WHCA! Didn't think I would since I only find her stand-up routine mildly amusing. I don't think anyone else could've said some of the things she did ... like not wanting to see Obama's nipples! I got a huge chuckle out of that! I've heard the Fox crowd today complaining that she was too tough on Limbaugh. You know what I think they can do with their criticism. I also loved seeing Glenn Beck squirming like a baby at the foxnewz dinner table. Any event that makes the far right squirm is a worthwhile cause!

Fran said...

Hope your computer is all better & soon

enigma4ever said...

dear DK...
wow...
what an amazing post...
lovely tribute to your mom...and explaining what the disease is all about...and how it effects all around - the family really does witness losing a person- a real person...your story about her wandering off in her nightgown...so so sad...I have worked in three different nursing homes...it is so different to work in a home....but family members really do have the most heartbreaking task...and hard work...

she is so lovely in that photo...she looks so good...clear eyed and happy...maybe that is why you posted the photo...a part of you wants to remember her that way...happy and beautiful....

many many hugs....and happy mothers day...

D.K. Raed said...

Thanks, Enigma ... you always know what to say ... I do try to remember my mom in her pre-alzheimered state, not as she was at the end, a shrunken mummified version of herself. She only wandered off that one time, but after that my dad did get her an ID bracelet (if found, please return to ...)!