Volume 5, Issue 18 - The Ribbon Newsletter

Volume 5, Issue 18
September 2, 2001
www.TheRibbon.com
1104A Murfreesboro Pike PMB 114
Nashville, TN 37217-1918

Happy Birthday
to
Kevin!!
Our website manager
Weather91

Gathering of Friends

It looks like we will have a nice representation of the country at our Gathering. We have folks from 11 states coming. If you want to join in the fun, this is the last weekend to let us know. Check out the GOF section of The Ribbon website and read a little about the 1999 Gathering. See what some of us look like by checking out the pictures. See what we will be doing this year. It is a time you will remember forever and hold dear in your heart.

Gathering of Friends 2001 - TheRibbon.com
www.theribbon.com/gof/index.php

After looking at all the good times we had in 1999 and the fun we will be having this year you may want to make some plans to attend!!!

Donations for Memory Walk

If you would like to make a donation to our team "Jane's Angels" you may send it to the address above. We want to make a good showing for you our readers. Our motto is"Helping to Pay It Forward". Jane Levy (Alzjane198) helped so many of us in our role as caregivers and that is what we wish to keep doing. That is part of the reason for The Ribbon itself, we wanted to help others in their care partner or caregiving role as Jane helped us. Through this memory walk we hope to inspire others to Pay It Forward so that eventually a cure for Alzheimer's Disease can be found. We hope that future generations will not have to go through being diagnosed with Alzheimer's or another Dementia. We want a cure soon!!!

No donation is too small...if everyone who reads this newsletter were to send $1 just think of how many people that could help. Give it a thought! All donations MUST be received BEFORE September 28. We appreciate your support, your time, and most of all the friendship you share with us! Thanks to all!!

We will not be updating on the Gathering of Friends in The Ribbon after this issue. It will all be done to the individuals who will be attending via private email. We will announce here how much was raised, how many attended, and what all happened the issue after the Gathering. Kevin will add more to the GOF site, including updated pictures after we all get our pictures to him.

Caregiver of the Year Award

"Caregiving!" newsletter and Caregiving.com, sponsors of the Seventh Annual Caregiver of the Year Award, proudly announces a call for nominations for its Seventh Annual Family Caregiver of the Year Award. Each year, "Caregiving!" newsletter and Caregiving.com honor five family members who help their aging relatives.

"Caregiving!" newsletter and Caregiving.com hold theannual award in order to recognize and honor the efforts of persons who care for an aging relative. An independent panel of judges chooses five winners; the winners, and their stories, are featured in the December issue of "Caregiving!" newsletter and on Caregiving.com.

This year, Life Alarm, a medical alarm system provider, will award one of the five winners a year of service--at no cost to the winner. "We're thrilled that one of the five award winners will receive such a useful and helpful prize," says Denise Brown, Editor and Publisher, "Caregiving!" newsletter. "We know what a welcome gift this prize will be for one of our winners." The Life Alarm prize will be awarded to one of the winners through a raffle drawing. Other prizes include a subscription to "Caregiving!" newsletter, a monthly publication, for as long as the winners need it.

Anyone caring for an aging relative, friend or neighbor is eligible for the award. Nominations are accepted annually from June 1 through October 15. Family caregivers can be nominated by other caregivers, health care professionals, family, friends, even themselves. An independent panel of judges chooses five winners based on the following criteria:

The caregiver's ability to complement their caregiving responsibilities with their own needs and interests;
The caregiver's problem-solving techniques;
The caregiver's use of community services;
The caregiver's community involvement.

To nominate a family caregiver, simply write an essay describing how that caregiver meets the above criteria. The letter should include the names and addresses of both the nominator and the nominee. Letters can be sent via e-mail to Denise Brown at denise@caregiving.com or via regular mail to Tad Publishing Co., P.O. Box 224, Park Ridge, IL, 60068.

To learn more about the Caregiver of the Year award, please visit the Caregiving web site at http://www.caregiving.com. To learn more about Life Alarm, please call 800-780-5433 or visit its web site at http://www.life-alarm.com. You can also e-mail lifealarm@aol.com for more information.

Dear Abby

Dear Abby:

I am in my 80's, and in fairly good health. I still drive a car, do my own cooking, baking, vacuuming, etc. My wife has been in a nursing home for more than four years with Alzheimer's. She is well cared for. They feed her, dress and bathe her, and do everything necessary to keep her comfortable. I visit her twice a day.

When I meet people, or they call me on the telephone, the first thing they ask me is, "How is your wife doing?". I appreciate their concern about her, but nobody ever asks, "How are you doing?" "How are you getting along?"

I'm not looking for sympathy, Abby, but on the other hand, sometimes I could use a kind word or an invitation.

--Lonesome in Seal Beach, Calif.

Dear Lonesome:

Yours is a common problem and you have my sympathy regardless. People do not mean to be insensitive, they simply haven't experienced what you're going through and don't understand how emotionally isolated you are.

The Alzheimer's Association gives referrals to family support groups nationwide. The toll-free phone number is 1-800-272-3900. Please don't wait to call them. Trust me; you'll be glad you did.

Input needed!!

We would like to do an issue on the value or use of antidepressants in the patient with Alzheimer's Disease or other Dementia, and in the care partner or caregiver. What are your ideas, beliefs, thoughts?

Some people do not recognize depression while others do. Some recognize it in others but not in themselves. Some believe that the antidepressants help in their day-to-day doings while others believe it keeps you from dealing with reality. Are they addictive or can you quit taking them when the stress has lessened?

We would really like to hear your stories of how they helped or how they hindered you or your loved one. It just may help someone make a decision for themselves as to whether or not they would be useful.

In Passing: Those We Must Remember

From PHOTOLJT
dated 8-24-01

It is with much sadness and a heavy heart that I write to you this evening. I received word from Wsals62, or Sally as we know her. Sally let me know this evening that her husband passed away this past Sunday after his 11 year battle with Alzheimer's. The memorial service is to take place on Tuesday the 28th as they are waiting for all the family to arrive. Sally seems to be in good spirits and doing pretty well.

Please join with me in extending your sympathies and thoughts out to Sally and her family in this very trying time.

Love Always,
Linda
The Gathering Place
Online Alzheimer's
Caregiver Support
http://www.theribbon.com/GatherPlace/

Celebrating Mother's Life
by Mary Emma Allen

Although I was expecting my mom's death, in her eleventh year of Alzheimer's disease, I still felt a loss when I received the call that she'd passed away quietly in her sleep. At her funeral I wanted friends and family to remember her as the vital, giving woman they once knew and to celebrate her life by recalling good memories.

I wanted them to realize, too, that even though Mother had been afflicted with Alzheimer's, she still contributed to the lives of her family and the staff at the nursing home.

Learning to Appreciate

As I cared for Mother midst this devastating disease, I learned to appreciate the person she was at that time. Even though she might not know me, might not remember our life in the past, she still could respond in a limited way. At the sound of a friendly voice, she smiled and often tried to talk. With a kiss or a hug, she beamed. When we wheeled her outside to see the flowers of spring, she seemed to appreciate this attention. At an Easter egg hunt at the nursing home, her eyes followed the antics of the children as they gathered their goodies. As I cared for her, I learned a greater love that comes with serving. We realized she still was a person, even though she was much different from the mother I'd known.

She Taught Great Grandchildren

My grandchildren, her great grandchildren, learned from this elderly lady. They enjoyed visiting her at the nursing home and looked forward to the tea parties we had in her room. Even when she could no longer participate, this ritual had meaning for the children. They learned about caring for the elderly and infirm and knew that Great Grandma could respond in a limited way to our overtures toward her. The children learned to have no fear of nursing homes and know this often is a part of the cycle of life. Even though Mother didn't realize it, she taught her great grandchildren and gave their life value.

She Brightened the Staff's Day

"We enjoy your mother's lovely smile," the staff at the nursing home often told me. She brightened their day and made them feel better because she was there. A friend, who gives piano recitals in nursing homes, said that caring for the elderly often enriches the caregivers' lives. She agreed Mother still had a purpose in her life.

She Leaves a Legacy

Then when God decided Mother had taught us well, he called her to different life. When we remembered her at her funeral I hoped friends and family could celebrate the 91 years of this lady's life. She will live on in our memories, our traditions, and our heritage. She leaves a legacy for her children, grandchildren, and great grandchildren.

(Mary Emma Allen has chronicled her mother's journey through Alzheimer's in "When We Become the Parent to Our Parents," in hopes of encouraging others as they care for a family member. More of Mary Emma's stories will appear in "Finding the Joy in Alzheimer's" by Brenda Avadian, to be published by North Star Books in September. Mary Emma has other stories in the 2theheart.com archives.

Visit her web site: http://homepage.fcgnetworks.net/jetent/mea
me.allen@juno.com)

From aromanow@becon.org
at the DASN Mail List

Given to me by the nursing home. Describes my Mom and I. I read most of this at her funeral with a little help from a friend. Kathleen

Two Mothers Remembered

I had two Mothers - two Mothers I claim
Two different people, yet with the same name.

Two separate women, diverse by design,
But I loved them both because they were mine.

The first was the Mother who carried me here,
Gave birth and nurtured and launched my career.

She was the one whose features I bear,
Complete with the facial expressions I wear.

She gave me her love, which follows me yet,
Along with the examples in life that she set.

As I got older, she somehow younger grew,
And we'd laugh as just Mothers and daughters should do.

But then came the time that her mind clouded so,
And I sensed that the Mother I knew would soon go.

So quickly she changed and turned into the other,
A stranger who dressed in the clothes of my Mother.

Oh, she looked the same, at least at arm's length,
But now she was the child and I was her strength.

We'd come full circle, we women three,
My Mother the first, the second and me.

And if my own children should come to a day,
When a new Mother comes and the old goes away.

I'd ask of them nothing that I didn't do.
Love both of your Mothers as both have loved you.

Email Bag

From shorne@solve.net

I just want to say how much I appreciate the article "Stages of Alzheimer's Disease" printed in "The Ribbon" Vol 5, #17, Sunday, August 19, 2001. Since my mother is suffering from dementia and probable AD, I found these comments very applicable to her. In fact I saw her in these examples many times as I read thru the article. I have copied it and enlarged it, also made it bold to make it easier to read and sent it on to family members and friends.

I am attempting to talk to my mother about her illness while we can still communicate. This is a new step for our family as in the past she has been unwilling to discuss it with us. But slowly perhaps the door is opening, as I learn how to better approach her. I've learned from just taking the Ribbon a short time and being on the DASN Chat. Each issue of the Ribbon I've found something valuable.

Thank you so much for all your efforts to reach out to those of us who need help and support.

Warmly, Sue

From wewells@peoplepc.com

I have written to you just once before. My husband is in the early stages of dementia and also had his left leg amputated in January. We are doing pretty well. I am 4' 10 inches short and he is 6' 2. So now I have a rather large "little boy" to care for. But I would not have it any other way. He looks for me constantly, even when I am in the bathroom. But thank God I can still leave him to go shopping. I leave him a note to remind him where I am, and check on him on my cell phone. Many times, though, he doesn't answer because he sleeps a lot.

The biggest problem I have right now is that he will not go to bed without me. When he is ready, he expects me to go to bed, even if it is eight o'clock. I need only about 6 hours a nite and cannot do this. Any suggestions?

We really are not too bad off. We go to church, to the Knights of Columbus on Friday nights and to dinner with friends. Our bowling league starts soon and I was going to join and have him come along, but he gets agitated and wants to bowl and of course he cannot. Not yet anyway. He walks with a cane and is convinced that he will soon be bowling, playing golf and dance. We have always loved to jitterbug and miss it.

I feel the Lord is walking along with me through this and that because of the dementia he has accepted the loss of his leg much better.

There is so much more I could write, but this is long enough. I thank God I found you on the internet and also my son who was wonderful enough to buy this computer for us. He had hoped that Bill would get some enjoyment from it but it is just too much for him to comprehend. So he enjoys reading the things I print out for him. Thank you again for being there and God Bless you.

Sadie

From thurman32@earthlink.net

Do you know any alzheimers doctors in greeley, colorado?

From tbird50@earthlink.net

i am about at my breaking point --- and i am not even the main care giver, her husband is -- but more and more is falling to me as her son...... she is knowledgeable, and knows what happening around her and is able to carry on normal conversations over the phone with people and able to tell us what she needs -- but once put to bed, even with a sleeping aid, she is up and down all night long.... we are just now starting a heavier dosage of sleeping pills and pain relief... this is all brought about by a series of strokes over the years, the latest being a month ago...... in the nursing home all she did was sleep....... now if she doesn't get the sleep she needs or some event occurs she can lapse into some kind or paranoid or psychotic episode thinking people are out to get her and calling us every name she can think of..... i live in palmdale, california, next to lancaster and about 60 miles northeast of LA...... her husband is 78, my mother is 76 tomorrow, i am 51 and in extreme bad health myself.... so while it is my intention to keep her home and try my best as a son should --- all kinds of terrible thoughts run through my mind as i try and try to get her back to bed.... at this point she is sleeping maybe two or three hours in the last 3 days... i am physically hurting myself by lifting her etc..... any help, especially on remedies for this sundown syndrome... thank you so very much.

terry

We hope you are enjoying your Labor Day weekend. Take the time to rest and rejuvenate!!

Hugs and Peace,
Jamie and Karen