Volume 7, Issue 18 - The Ribbon Newsletter

Volume 7, Issue 18
September 21, 2003

www.TheRibbon.com
1104A Murfreesboro Pike
PMB 114
Nashville, TN 37217-1918

What a change Alzheimer's or other Dementia's make in your life. My life was changed forever as I cared for three grandparents and then my Mom. I became a more compassionate person and I learned a lot of patience. I was strong enough to do the ugly duties and not get upset and I was loving enough to be able to sit and spoon feed.

My husband, Nick, as you all know has MID or Vascular Dementia. He also has Diabetes which has caused a lot of neuropathy which is nerve damage. He hurts when he walks, lifts his arms, uses his hands, and almost anything. Needless to say, he can hardly work. He is a brick mason. The work has fallen off so badly this year due to the economy and this just makes matters worse.

For the last 19+ years, I have been a stay-at-home mom, wife, and domestic engineer. Now at this time in my life I must find a job in order to support the family. I am somewhat excited to be out in the workforce again but I am also scared to death. I have to find a job that will give me the flexibility to be able to take Nick to doctor appointments. Hopefully I will find one that I can do from 7 am to 3 pm so we can schedule Nick's appointments as the last appointment of the day. Wish me luck as I go about locating a good job!

There Once Was A Woman

An Alzheimer's Story

There once was a woman, not very old
Her story may be common, but it's never been told.

I'm just a young girl, I see her in my mind and I'm watching her
She's caring for a woman who can't care for herself.
She prepares the woman's medicine and offers her the pills
This woman is her mother and it's giving me the chills.

She came to live with us one day, we knew she would never go home -
Granddad couldn't care for her anymore, but new he had to live alone.
She cared for her mother like no one else could
She nursed her with love the way a daughter should
We knew it wouldn't be long before the angel came
The time would come and there would be no blame.

I'm just a young girl, I see her in my mind and I'm watching her,
She's caring for a woman who can't care for herself
The woman is her mother-in-law and she lives upstairs from us
She cooks a mean and takes her food,
But instead of thanks, there's just a fuss.
The woman is crying as she comes down the stairs and I don't know why -
Her mother-in-law was mean and made her cry.
The woman bathed her and fed her and treated her well.
For the life of me, I can't understand why she treated her like hell.
The woman cared for her until she died -
I still don't know if my mother cried.

I'm just a young girl, I see her in my mind and I'm watching her
She's caring for a man who can't care for himself
The man is her husband and he's lying in bed -
She's checking on him, making sure he's been fed.
He has hepatitis and can't get around -
His medical condition is keeping him down.
But she never complains, not a negative tone.
She cared for him till he was well and never left him alone.

I'm just a young girl, I see her in my mind and I'm watching her.
She's caring for a woman who can't care for herself.
The woman is her cousin and she can't get out of bed -
She's suffering from cancer and has to be fed.
The woman brings her food and medicine -
And comforts her with care
She bathes her and hugs her so she knows that she is there.
The woman cared for her until she died,
And on that day my mother cried.

I'm just a young girl, I see her in my mind and I'm watching her
She's caring for a man who can't care for himself.
The man is her father and I see his aged face -
He's sickly now and has a slower pace.
He lives with us now as her mother did before -
Her unconditional love is something we adore.
The woman brings him food and medicine and I know that she is sad
She already buried her mother and next will be her dad.
We knew it wouldn't be long before the angels came-
The time would come and her life won't be the same.

I'm just a little girl, I see her in my mind and I'm watching her.
She's caring for a child who can't care for herself.
The child is her daughter and she's laid up in a cast.
Hit by a car just a few weeks past.
The woman was there beside her bed -
Making sure she's clean, powdered and fed.
The child is me and I know it quite well -
The gentle touch of my mother, the comfort and live I can tell.
Just 7 years old, she took care of me the best -
When I look at her now, was it all just a test?

I'm just a little girl, I see her in my mind and I'm watching her
She's caring for a family who can't care for themselves.
The family is her brother's, and she knew they were in need
This family is less fortunate, she'd find a way to help indeed.
She would send me down with groceries, behind my father's back.
It didn't matter much to her, cause food we didn't lack.
Her kindness brought them through hard times, five little mouths to feed.
Will anyone remember this - my guess is there's not need.

I'm just a little girl, I see her in my mind and I'm watching her.
She's caring for some children who can't care for themselves.
Four children who belong to her - there's three girls and a boy -
She tells us stories from her past and her face fills with joy.
Her childhood life wasn't easy, immigrant parents from abroad
But she never complained, or said she was bored.
She fills us with stories from when she was young
Every word we hang onto as they flow from her tongue.

I'm not a little girl anymore, I see him through my eyes and I'm watching him
He's caring for a woman who can't care for herself.
The woman is his wife and she's not being very nice
He tries to give her medicine, but she spits it at him twice.
He cares for her and nurses her - he does the best he can
To care for the woman who once took care of him.
My dad is old and tired - a terrible hurt he must endure
His wife is stricken with Alzheimer's -
A disease that has no cure.

There once was a woman, not very old
Her story may not be common
But now it has been told

By Norma NCK43

In Passing: Those We Must Remember

Friends, it is with sadness that I write to inform you that MeeMawMoe, or Sharon to us, lost her life long friend and husband, Jerry, on September 17, 2003.

I have spoken with Sharon twice this week. Sharon and her family are very much at peace with Jerry's passing. Sharon brought Jerry home from the nursing home a couple of weeks ago. In our discussions, she knows this was the most loving gift she could give her husband. A celebration of Jerry's life took place with his family and friends on Friday, September 19.

Jerry is the first online loved one I met in my journey of Alzheimer's. I had the great honor of meeting Jerry during the summer of 2001. Jerry's gentleness and playful heart showed through the confusion of his disease. As I watched him with his children and grandchildren, it was obvious how much love he had for his family and they for him. In watching Sharon with Jerry, you could not help but see the love and admiration in her eyes for "my Jerry." Yet you could also see how much her heart was breaking. She knew it was her job to provide the love and support Jerry needed and she did this unfailingly. With Jerry being an early onset person, this has been a very long battle. Sharon fought the fight along side her husband, doing everything in her power to find every possible avenue of help for Jerry.

I smile when I think of how thrilled Jerry was to be at the airport when they took me for my flight home. His face glowed with a huge smile; planes thrilled him. Jerry was in his height of glory, his eyes darting from window to window, looking at the planes; thrilled when he would spy one taking off. (Thumbs' up Jerry!)

Sharon is doing remarkably well. Her faith and family are keeping her strong. She asks us not to be sad; as she says, he is not suffering anymore.

Please join with me in sending your thoughts and sympathies to Sharon and her family during this difficult time.

Memories of Jessie

by Mary C. Fridley RN, BC

For sixteen wonderful years Jessie and I were the best of friends. She had no other family so we lovingly adopted her into ours. She had a friendly disposition and a big heart and was always available for a hug or a kiss. She was a simple girl with few demands and openly accepted family and friends with no reservations. Sometimes I couldn't spend as much time with her as I wanted to, but it didn't seem to matter. She never held grudges and was grateful for the time we had together.

We shared a love of the outdoors and spent many hours walking in the park marveling at the change of seasons. She was a great listener and I felt safe in pouring out my heart knowing that my words would go no further. Looking back I realize that on a certain level she was my caregiver when I didn't even know I needed one.

The years passed too quickly - the children grew up and left home and my husband and I found new passions to pursue. But Jessie remained a constant, moving inconspicuously from childhood to adulthood to elderhood. In her later years we still took long walks and shared secrets before her health took a sudden turn. It was hard for me to admit that she was getting old, even when her eyesight dimmed and her hearing diminished. But when she started forgetting things and incontinence became a problem, I had to let go of the fantasy that she would live forever.

I think the dementia was the most difficult for me to accept. I could always count on her to be there for me, but suddenly our roles were reversed and I became her caregiver on a whole new level. Little did I know how heart breaking and rewarding it would be.

Jessie was a picky eater and had a discriminating palate. She hated taking medicine and fought me tooth and nail. She was only on an aspirin a day but could be down right hostile about it. She became adept at pocketing the pill between her lip and gum only to spit it out on the living room rug. I learned to be resourceful, as all caregivers do - I crushed the aspirin, mixed it with a teaspoon of peanut butter, and never had that problem again.

Jessie suffered from arthritis so staying in one position was difficult and nighttime was the worse. I would hear her tossing and turning several times during the night trying to find a comfortable position. She would wake in the morning stiff and sore but once up and moving became more limber. Towards the end of life her hearing and vision were so poor that touching was the only way to get her attention. I learned to back away quickly when rousing her because the startle effect made her scratch or bite from fear.

One day I got a phone call from my neighbor telling me Jessie had wandered to her house. I hadn't even noticed she was gone and my mind raced with all the terrible things that could befall her from getting hit by a car to getting lost.

Incontinence was most distressing to her even in her dementia state. She was always so prim and proper and the frequent accidents caused her to whimper in horror and humiliation. I would lovingly clean up after her trying to soothe her with words of comfort. There was no way she was going to wear a diaper nor was I going to try to put one on her.

The most horrifying incident occurred on a cool April night. My husband and I had gone to bed and were awakened by the sound of Jessie falling down the stairs. She had gotten up from her bed, maybe needing to urinate, and lost her balance at the top of the stairs. I'll never forget her cries when she hit the cold tiled floor. Thankfully she didn't sustain any serious injuries, just a badly bruised body and ego. I crawled into bed with her later that night to hold her and be near if she needed me.

Despite all of this she remained determined to live and enjoy life. She especially enjoyed lying in a warm beam of sunshine as it streamed through the window onto her bed.

Jessie's health continued to decline and by summer I knew she couldn't hang on much longer. But she out lasted my prediction and on a warm Monday in November she passed away quietly in my arms. She was considered an old lady in dog years and had out lived her time. In the end she couldn't move any part of her body except her head, which she used to lick me adoringly while the Vet put her peacefully to rest. I thought I was ready for her leaving and had bolstered myself with the knowledge that she would no longer be in pain. But I wasn't prepared for the emptiness I felt and the longing for her company. There are still times I think I hear the jingle of her tags as comes into a room to be with me.

Jessie taught me many things about aging and care giving. I learned patience and tolerance, compassion and empathy, forgiveness, humility, and resourcefulness. I learned that aging is inevitable and how important it is to be thankful for each day and enjoy the simplicities of life. But most of all Jessie taught me about unconditional love - a love with no strings attached and no regrets.

Mary C. Fridley RN, C is a Registered Nurse board certified in gerontology with more than twenty years of experience in the geriatric health field. She is a writer of advice columns and articles for caregivers as well as a public speaker. Mary will be glad to answer any questions you have and can be reached at P.O. Box 573 Riva, MD 21140, or by email: geroresources@comcast.net.

We Need Pictures!!!

Many of you are attending the Gathering of Friends in Nashville, Tenn. next month. To each of you, we ask that you bring along a photograph of your loved one.

And to those of you who cannot come, we have a special request.....you send us a picture of your loved one too. We would like to attach them all to our banner as we do the Memory Walk so that all of our "Ribbon Family" is with us in spirit on that special day.

This will be our third walk together and those who have attended in the past know how very special it is. To engulf all of our readers and their loved ones, we feel that this would be so wonderful to have. So get the Kodak out, dig through the photo album and get it in the mail as soon as possible. Send one that is a spare or an extra, as we will not be able to return them. Do put on the back the name and home town and state. And also the e-mail address of the sender.

Send them to the Ribbon Post Office Box address:

Donations

Those of you who are still planning on sending a donation to The Ribbon team of Jane's Angels, we have a deadline date. Please make sure that you have mailed it by this Friday, September 26. This will guarantee that it will get here by BANK DAY, which is the day the money is turned in and posted to our team.

We are happy to say that we are over half way to our goal of $3000. We have one more week left! We are very proud to say to everyone that we have the greatest readership! We've had donations online and we've had them coming to the PO Box. What a thrill! We are overcome with the generosity of all of you! You've taken time and trouble to donate and we do appreciate it. We hope to do you proud at the Memory Walk!

If you have not donated and still wish to, you may donate on the Jane's Angels secure website, or you can make a check out to The Alzheimer's Association and send it to our address at the top of the newsletter. We all continue to Pay It Forward!!

Email Bag

From Willorain@aol.com

"One More Month!"

From Ellenbabe1@aol.com

Thank you all soo very much for being soo kind as to publish the URL of mom's memorial website in this issue...
Special thanks to Jamie...
Love you All..

God Bless..
ellen

Just wanted to let you know in case you have not been to mom's site lately, I have put on many new pages the past couple of days...will be adding them on a regular basis..
Sure appreciated you guys mentioning the link in the Ribbon..

love and blessings..
ellen

From Superscan1@aol.com

As some of you know I lost my dear husband of 57 years on Jan 17th. of this year. That was an awful day. However I have taken an attitude that has helped me so much, I would like to share it, Maybe it can help someone else.

I keep telling myself I have crossed a bridge in my life experiences. I experienced many of life's treasures in the past, but this new side of the bridge is my life as it is to be now. I believe this side can also hold many treasures. I believe this new side will be different but can be equally rewarding. I want to always be open to new experiences and new ideas. No, I will never marry again. No one could ever measure up to my Johnnie, but life alone is OK too. I find daily surprises, in that I can make wise decisions of my own.
We live in a wonderful age of TV to keep us up on everything. We don't have to saddle up a horse to go to find shopping for new clothes. We can get in our car and just explore what this world has to offer. We are so fortunate to live in this age. In short we can find a new life. It just takes a little searching and to view the world like a little child after all the years of caregiving. It was a wonderful life. Those memories will be enjoyed later, when I can handle them, without the tears they bring.

For now I am learning all the new things I can, and discovering this new life, and building new memories, even though they cannot include both of us. There is still a lot of living to enjoy. Life goes on and it does not have to be dull or depressing. Like building a house, It gets better one brick at a time. If I can help someone else to go through the experience of losing ones mate I will be forever grateful. You all are the greatest. Your many kindness will always be etched in my memory of Johnny's illnesses.

Autumn starts on Tuesday! Take a moment to look around and enjoy the beauty of the changing season!


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