Volume 2, Issue 22 - The Ribbon Newsletter

Volume 2, Issue 22
November 12, 1999

We know that sometimes we, as caregivers, get overwhelmed with our responsibilities. We are coming up on Thanksgiving and We'd like for you to take a few minutes each day until then to find at least one thing to give thanks for. You will be surprised how doing that little thing will brighten up even the most hectic day. Now that I'm thinking about it, why don't you all send us short notes entitled "Thanksgiving" to share with all of us. We'll just make it a Thanksgiving issue if we get enough responses. The deadline for getting them to us will be November 21.

Medical News

From NotelyJoan

The Spain report reveals that people taking an antidepressant from the selective serotonin reuptake inhibitor family of drugs -- which includes Prozac (fluoxetine) and Paxil (paroxetine) -- have a threefold greater risk of upper gastrointestinal (GI) bleeding. Please read the entire article at AllHealth.com.

Dementia Guide Created For Doctors
LOS ANGELES (AP) — The American Medical Association has a new guide to help doctors diagnose and treat dementia, a disorder which affects millions of people and is becoming an increasing concern as the U.S. population ages. For the whole story, go to intelihealth.com

In Passing: Those We Must Remember

From IMISTY123
dated 10/30/99

It is with sadness that I will tell you that my father, passed away yesterday afternoon. He had been afflicted with Alzheimers and we cared for him. I have often stopped in the chat rooms to discuss my issues and found people there who helped..

My dad was diagnosed about 5 weeks ago with stomache cancer which had metastasized to his liver, lungs & bones...So very suddenly, they said nothing could be done. He returned home from the hospital on hospice home care, and the alzheimers complicated his situation tremendously. He suffered a double whammy, a horrible physical illness, plus the alzheimers...Now, he's at rest. He died with myself and mother present along with my pastor.. He's not in pain anymore...

Thank you for all the wonderful work you do...I will be in touch...

AnnMarie....

E-Mail Bag

From JDunn56760

Mina,my prayers are with you. I pray also that you find and accept the reason for this. My husband is in a home now and had standard AD for 5 years with 3 being diagnosed. Last night at an affair at the home he lives in. I watched my husband and others and I finally realized that the Lord has given me a reason to live. I spend my time visiting and loving those that seem to be forgotten by their loved ones. It gives me joy to say hello, give a pat and acknowledge them as human beings, they love me as I love them. It is the purpose for me. If my husband had died I would never have had the opportunity to be as I now am. I lead a support group in hopes of helping others to accept. I will continue to do what is now my job. This is a wonderful place for a 70 year old to be, as I am needed by AD victims and I need them.

Jan

From SARAHGODD

Thank you so much for your latest volume of The Ribbon. In reading what others have written recently, it seems there are more than one type of dementia ... Alzheimers Disease, Dementia, and Vascular Dementia to name a few. How can it be determined just what type of dementia one has? I know it must be done thru a specialized physician; however, is it determined by x-rays, cat scans, MRI's, or.......? What test should I specifically ask for from my mom's doctor? I know she has dementia, but I'd like to know WHAT kind of dementia. (I've been told it doesn't matter, so I guess I shouldn't make a big deal of it, but for some reason, I feel I need to know for sure.) Does it make a difference of what type dementia she has regarding treatment?

She has been in the nursing home for a year and a half and is getting progressively worse, but when I see her compared to those who have been diagnosed with AD, she doesn't seem to be quite as bad. She doesn't seem to fit into the "norm" for what these other individuals are going through or exhibiting. Does one type dementia cause deterioriation any faster than another? Sorry for all the questions, but these are just things that have been on my mind for some time.

Also, I don't remember if I previously sent you the following poem. Anyway, it is worth sharing with you again. Thank you for the wonderful support and articles. Keep up the good work!!!!!!!!!!

--Sarah--

The Old Woman

What do you see nurses,
What do you see?
What are you thinking,
When you look at me?
Do you see~
A crabby old woman,
not very wise
uncertain of habit,
with far away eyes.

A person who dribbles her food,
and makes no reply
when you say in a loud voice,
"I do wish you'd try"

A woman who doesn't seem to notice
the things that you do,
and forever is losing
a stocking or shoe.

A person, maybe resisting at times,
lets you do as you will,
with my bathing and feeding,
and handing me my pills.

Is that what you're thinking?
Is that what you see?

Then open your eyes nurses,
cause you're not looking at me.

I'll tell you who I am,
as I sit here so still,
as I rise at your bidding,
as I eat at your will.

I'm a child of ten
With a mother and father
and brothers and sisters,
who love one another.

A young girl of sixteen,
with wings on her feet,
dreaming that soon now
a lover she'll meet.

A bride soon at twenty,
the heart gives a leap,
remembering the vows
that I promised to keep.

At twenty-five now
I have young of my own,
who need me to build
a secure, happy home.

A young woman of thirty,
my young now grow fast,
bound to each other,
with ties that should last.

At forty, the young ones are grown
and soon will be gone.
But my man stays beside me,
so I don't feel so alone.

At fifty once more,
babies play round my knee.
Again we know children,
my loved one and me.

Dark days are upon me,
my husband is dead,
I look at the future,
and I shudder with dread.

For my young ones are all busy,
rearing young of their own,
and I think of the years
and the love I have known.

I'm an old woman now,
and nature is cruel.
Nature makes old age
look like such a fool.

The body is crumbled,
grace and vigor depart.
There is now a stone
where I once had a heart.

But inside this old carcass,
a young girl still dwells.
And now and again
my battered heart swells.

I remember the joys,
I remember the pain,
and I'm loving and living
life all over again.

I think of the years,
all too few, and gone to fast,
and I accept the stark fact
that nothing can last.

So open your eyes, nurses,
open them and see,
look a little closer, nurses...
Please~~see the real ME.

~Author Unknown~

From LILAUTHOR1

I read Mina's article with more interest than the average bear, since she is another EO AD patients with whom I have networked, and participates in our patient-only posting list.

I want to congratulate you for printing the article from Mina, because I do believe We the People have something left to give, something to contribute to the cause of fighting this disease which robs as a thief in the night.

There have been times in my experience when my articles or posted messages on caregiver-oriented agenda sites were received with churlishness. I hope this will not be the case regarding Mina's article, because she has joinedothers and me in advocacy, and has not yet been jaundiced by flinging herself at windmills. Her participation in Memory Walks and other promotion for the Alzheimer Association in California is valued not only by them, but by me. She believes as I do that we can best keep ourselves mentally stimulated by such participation.
And who knows, someone in power may listen.

It takes more than resolve and a facility for speaking or writing to be an outspoken advocate when you are also a patient.
It takes guts.

WAY TO GO, MINA!

Forget Me Never,
Diana Friel McGowin

From BELL OF WV

Dear Friends..
I would like to thank you all, for your e mail, and all your kind, thoughtful words and prayers, in the passing of my mother, on Oct. 12. I can never express to you how much it means to me, to know good friends like you, are there for me, and wish I could thank you all individually. Bless all of you.

Vivian __BellofWV__

From Cwadephill

Hi,
Mina here. Just wanted to drop you a note to thank you for publishing my article ? ? ? At least I will presume you have since I have gotten very nice reviews and kudo's from 2 of my peers. - They were also directed at you and your newsletter's courage to show 'the other side'. I have gone through your past Ribbon's on your site but have yet to be successful in signing up for subscription. So I did go looking - but was unable to come up with a thing and I know what I forwarded was not person tense correct (I don't know how else to say :[ ) so I'm hoping your editorial skills were kind. Again my sincere thanx - and as well if you can help me in subscribing I would be most pleased. I have printed out a number of items that I felt were most appropriate to "my" future care for my hubby and have tucked them away for him. Right now the 'head in the sand approach' seems to work best for him - we all survive the best we can ! Hugs

Mina

Editor's note: I forwarded the information about a link to be able to subscribe to Kevin, I'm sure he will do what ever he can to fix a quick link.

Now for the other matter: Courage to print the article? It takes courage for Mina, Diana, and others who have been diagnosed with EO AD to stand up and talk about it. I applaud each and every one of them. I also appreciate the effort they put forth in helping us to become better caregivers. We welcome any and all input that is given us.

From dsrtlite@primenet.com

I really appreciate the info, THX! funny thing, I worked in 'social services' kinds of jobs, both as a volunteer and as paid staff for almost ten years, and thought I knew 'the system'. Turns out I didn't know jack. Out of 3 brothers-1 lives here, the others in MI, the only real support comes from one bro in MI. The one that lives here stopped taking Dad for Sunday brunch as he'd been doing for years when he discovered he could no longer hit Dad up for cash anymore. Gordon, from MI came for an Easter-time visit that was supposed to last for a week, so we could sit down and decide how we were going to handle finances, etc. He left after two days, leaving all decisions to me. PaulE actually came down for two weeks when Dad was in hospital in Feb.and cleaned house, put in hospital time, and really *helped*. But he's now on a new job and won't have vacation time again for a year. now that Dad is in a supervisory home, it doesn't really make sense for him to relocate, as he was thinking of doing. I've been online for four years now, and have found in unusual situations like this, this is where the best help is to be found. People generally seem to think there's only two things that happen when people get old--they die or go to a nursing home. Unfortunately, there are so many degrees in between you don't really know about until you get there. even the professionals who are supposed to be working in this area apparently *don't know*, which is amazing to me.

anyway, thanks again!
Love and Light,

Trudy in Yuma

From DKThomp

Good morning all:
I went to the memorial service on Saturday for Lyn Ambacker who died from complications from EOAD on October 27. It was a very touching service. I was able to talk to Harry for a few minutes. We didn't say much we both just knew what was in each other's hearts. Harry and Lyn were missionaries to Hong Kong for over 30 years. It made me think of my beloved Ann, and then I remembered six years ago yesterday. I wrote this in my journal and thought you might like to have a copy of it.

November 7, 1999. Six years ago today Dr. Lindes, our family doctor, told Ann and I that we needed to have some tests run on Ann to see if what he suspected was true. He also suggested we go see a neurologist after the tests to get a more accurate diagnosis of her problem. I don't think I had heard much about Alzheimer's Disease, but what I had heard it sounded very frightening. By February of 1994, we had been to two other doctors and both had concluded probable EOAD. These six years have gone very fast it seems to me, and the changes that have occurred are very profound. Many changes but by the grace of God we are still making each day count.
Our journey together through this maze of cognitive degeneration has taught me more about the meaning of the phrase in Romans 12:1, "ye present your bodies a living sacrifice..." We can learn a great deal vicariously in this life, but some lessons are best learned by experience. Ann wanted so much to share her hope in Christ with others through this trial, and I believe she has become in essence a "living sacrifice" of that goal. My part in her sacrifice has made me humble which was and continues to be very needful, but hers is a real sacrifice of self through this insidious disease. But our hope has been that God will be glorified through all of this, and that both of us would be a living testimony to His grace and mercy. That was our prayer six years ago, and it is still the same today though she can't verbalize it now I still pray for both of us. The Lord's answers to our prayers have been of great graciousness and a kindness that truly passes all understanding.
One of the things that has helped me in all of this has been to write in this journal, and to try to write some poetry which helps me to live with my deep feelings that I can't express in any other way. But my poetry is very much that of an amateur, so today, I am going to copy a poem of Longfellow's which speaks in many ways to my heart on this day of remembrance. If there has been any "hero in the strife" to "act in the living Present!" it has been my beloved Ann. May Longfellow's words not only be a tribute to her faith, courage, and character, but remind all of us how we should walk in His Living Presence.

A PSALM OF LIFE
(HENRY WADSWORTH LONGFELLOW)

Tell me not, in mournful numbers,
"Life is but an empty dream!"
For the soul is dead that slumbers,
And things are not what they seem.

Life is real! Life is earnest!
And the grave is not its goal;
"Dust thou art, to dust returnest,"
Was not spoken of the soul.

Not enjoyment, and not sorrow,
Is our destined end or way;
But to act, that each tomorrow
Find us farther than today.

Art is long, and time is fleeting,
And our hearts, though stout and brave,
Still, like muffled drums, are beating
Funeral marches to the grave.

In the world's broad field of battle,
In the bivouac of Life,
Be not like dumb, driven cattle!
Be a hero in the strife!

Trust no Future, howe'er pleasant!
Let the dead Past bury its dead!
Act act in the living Present!
Heart within, and God o'erhead!

Lives of great men all remind us
We can make our lives sublime,
And, departing, leave behind us
Footsteps on the sands of time:

Footsteps, that perhaps another.
Sailing o'er life's solemn main,
A forlorn and shipwrecked brother,
Seeing, shall take heart again.

Let us, then, be up and doing,
With a heart for any fate;
Still achieving, still pursuing,
Learn to labor and to wait.

In His Great Love,
Doug and Ann Thompson

Something to Make You Think

From VGrgory

A frail old man went to live with his son, daughter-in-law, and four-year-old grandson. The old man's hands trembled, his eyesight was blurred, and his step faltered. The family ate together at the table. But the elderly grandfather's shaky hands and failing sight made eating difficult. Peas rolled off his spoon onto the floor. When he grasped the glass, milk spilled on the tablecloth. The son and daughter-in-law became irritated with the mess. "We must do something about Grandfather," said the son. "I've had enough of his spilled milk, noisy eating, and food on the floor."

So the husband and wife set a small table in the corner. There Grandfather ate alone while the rest of the family enjoyed dinner. Since Grandfather had broken a dish or two, his food was served in a wooden bowl. When the family glanced in Grandfather's direction, sometimes he had a tear in his eye as he sat alone. Still, the only words the couple had for him were sharp admonitions when he dropped a fork or spilled food.

The four-year-old watched it all in silence. One evening before supper, the father noticed his son playing with wood scraps on the floor. he asked the child sweetly,
"What are you making?" Just as sweetly, the boy responded, "Oh, I am making a little bowl for Papa and Mama to eat their food in when I grow up." The four-year-old smiled and went back to work.

The words so struck the parents that they were speechless. Then tears started to stream down their cheeks. Though no word was spoken, both knew what must be done.

That evening the husband took Grandfather's hand and gently led him back to the family table. For the remainder of his days he ate every meal with the family. And for some reason, neither husband nor wife seemed to care any longer when a fork was dropped, milk spilled, or the tablecloth soiled.

Children are remarkably perceptive. Their eyes ever observe, their ears ever listen, and their minds ever process the messages they absorb. If they see us patiently provide a happy home atmosphere for family members, they will imitate that attitude for the rest of their lives. The wise parent realizes that every day the building blocks are being laid for the child's future.

Hugs and Peace,

Karen (KMenges581)
and
Jamie (DrMOM1955)