Volume 5, Issue 5 - The Ribbon Newsletter

Symbolizing the way we are all woven together
in our fight against Alzheimer's Disease

Volume 5, Issue 5
March 4, 2001

www.theribbon.com

As most of you already know, we have suffered a loss in recent days. Our own DrMom1955 (Jamie) has lost her stepson. He suffered a massive stroke and will be laid to rest tomorrow. This is the information I received from Jamie's sister:

Roger Aguilar
Calvario funeral home
300 West Davis St.
Dallas, TX 75208

He will be buried at 1:00 Monday. Thank you for your prayers.

Editors' Note: Roger had been ill for some time and those of us who are caregivers know the frustrations that go along with that. Most of us care for our parents or a spouse. This was different, Roger was young and did not have the opportunity to experience life as he should have. He did, however, have an angel in his life....Jamie. She set all things aside to fly hundreds of miles to assist in his caregiving, more than once.

She is there now, with her husband, Nick, helping the family to get thru these terrible days. Please continue to keep this family in your prayers.

Changing Roles Come with Age
by Kathleen Corkery Spenser
Freelance writer for The Spolkesman-Review

When I was a very little girl, my mother wiped drool from my lips, combed snarls from my hair, and tucked me safely into bed. Now that my mother is a very old woman, I do the same for her.

Mine is a sporadic, time-limited care, not the night-and-day tending she once did for me. I am not that brave, and she is not my child. I remind myself of that second point whenever I rush to wipe spilt soup from her chin or lecture her on the habits of good hygiene.

After all, this is the woman who shot bears with her father, argued theology with a Catholic monsignor, and, as a widow with marginal job skills, put two kids through college. This is the woman who brought me into the world. And I am the woman who, if grace allows, will see her leave it. Last weekend, I saw the shadow of that future, ghostly grace.

She had come for her Thanksgiving visit, and true to tradition, had stuffed herself like a prized holiday bird, while pilfering cigarettes and sneaking wine. Yes, she knows smoking is bad for her, Very bad. And yes, she knows the wine plays havoc with her balance. Major havoc.

At 80, she knows a lot of things and three things she knows for sure are the pleasure of a "good smoke", the taste of fine wine and the thrill of reading a good book. All three are habit-forming, and two of them can kill you. Still, for her, a life without some pleasure, however deadly, is no life at all. And besides, in the big mall of her life, there are only so many more shopping days left.

Shortly after the dinner, Mom announced she was going to bed. She stood unsteadily on spindly crane legs and shuffled to the bedroom. I ran behind her, pulling her walker.

I thought it wise to stay with her, if only for moral support. She insisted I go, for pride's sake. I reminded myself again that she is not my child and left the bedroom. I went to the study directly next door to her bedroom where I could watch her reflection in the adjacent windows. If she fell, I would be only steps away. An invisible means of support, a benevolent Peeping Tom.

She sat down on the seat of her walker, which I had placed strategically parallel to the bed, and proceeded to remove her knee-hi nylons. Slowly, gingerly, she reached down and tugged on the ends of the stocking, painstakingly working it down the length of her calf, past her cracked and crooked toes and finally completely off. She then flung the stocking, with no small amount of triumph, onto the bed table. Each stocking took about 10 minutes. Her pants took another 15. Exhausted, she decided to forgo her nightgown and wear her turtleneck sweater to bed.

The bed may as well have been Mount Everest. A pillowtop mattress, it presented a major maneuvering dilemma for her. I watched as she measured the bed's height and distance against her ability to hold and launch her own weight. She straightened her small, sparrow-like shoulders and prepared for liftoff. She failed, falling back down onto the seat of the walker. She rested and tried again. On the third try, she succeeded.

Now, she was sprawled length-wise across the bed. Helpless as an upended turtle, she lay face down on the comforter. I left the study and ran to the bedroom, slowing my pace to a walk as I approached the bed. While I lifted and straightened her body, plumped her pillows and tucked in her blankets, she drifted off to sleep. Her lungs wheezed and rattled like the chains of Marley's ghost. Then suddenly, she stopped breathing altogether.

I waited, holding my breath against time, hoping I could stop it from passing into a future I didn't want to arrive. Waited. And this time, it worked. Like a stalled engine, my mother's lungs snorted back to life.

As I watch her sleeping, I thought of all the old people in all the spare rooms of the world. I thought of the hard work of putting on a sweater, or taking off stockings or walking on thin ice in the deep winter.

Maybe life grinds us down so eternity's alchemy can render us to stardust. Maybe. One thing I know for sure. When I was a child, my mother taught me how much patience it takes to grow up. And now, she's teaching me how much courage it takes to grow old.

Kathleen Corkery Spenser is a free-lance writer who lives in Spokane. Contact her care of The Spolkesman-Review, P. O. Box 2160, Spokane, WA 99201, or kcorspence@aol.com.

The Ribbon Book Store

We have a new addition to our web site....a bookstore. Our site manager, Kevin, AKA Weather91, has gone to a lot of time and effort to give us a place to learn about books on Alzheimer's and caregiving. He has connected us to Amazon.com. You can reach this area by clicking on "Visit the bookstore" on the Home page or by clicking on the Amazon.com box, just below the counter. If you know of any books that should be added, send an e-mail to Kevin. We also welcome book reviews that can be shared with The Ribbon readers. Sharing is what The Ribbon is about.

We are soooo Proud!!!

This note was sent by Weather91's Mom, it is enough to make us bust our buttons!!!

Hi!

Just wanted to let you know that Kevin got word today that he received the University Scholar Award for the University of Maryland, Baltimore County. Not only did they accept him, but they are going to pay for full tuition, room and board (even his meals - do they know what they are getting into??). He still wants to live at home, though, ( I'm so glad!) so we'll see about the room! Thank you all for your kind words and the letters you have written- I know they really helped. I'll be sending you all his graduation picture soon!

Take care, Debbie.

Editor Note: Some of you may not have know that Kevin is a "young" man...but his enormous heart and mature wisdom has made The Ribbon what it is today. Join us in wishing him the very best as he moves down another of life's paths.

Kudos, Kudos

Another wonderful announcement:

Congratulations!

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StudyWeb®, Division of Lightspan, Inc.

FSU Student needs our HELP!

Hi there. My name is Dawn Metzler. I subscribed to your newsletter around six months ago, when I started Graduate school and was hunting for Alzheimer's information for my thesis. I am so very impressed with The Ribbon. I think when I subscribed, I told you about my thesis and how I would like to use The Ribbon for my research. Well, the time has come. :) As nervous as I am, I am so grateful for the readers that The Ribbon has. I have no idea how to get my survey to the readers. I will attach it to you, so that you can see it. It has been approved by my advisor at Florida State University and is ready to go immediately. I would like your readers to email me at the web address given, which is different from my personal one here, to tell me they are interested, and I can email the survey. I know there is an easier way, but I have no idea how. Needless to say, this is why I am not in the computer field. :)

Thanks, and I hope to hear from you soon. I look forward to getting this information and writing the article. I hope that it will help the caregivers in the future.

Dawn

Editor Note: Dawn needs our help, she will e-mail the survey to you if you send a request to: ADResearchFSU@yahoo.com. It is not a long survey. Asks basic questions about caregiving and the effects of caregiving on the family. With young people like Kevin and Dawn, the future appears so much brighter, there is hope....and hope is what keeps us moving forward. Please offer your assistance. Thank you!

I do apologize for the abbreviated issue this week. Jamie is the one who composes our newsletter and I do the "grunt" work of sending it out. Due to circumstances, I decided I'd have to do it....we have an obligation to all of you....thank you for your understanding and for being there for us.

Hugs and Peace,
Karen and Jamie