Volume 1, Issue 5 - The Ribbon Newsletter

Issue 5

Ahhh we thought Spring had sprung but the Lion in March showed up and spoiled our fun. Hope everyone has recovered from the cold spell most of us endured. Today we are including articles, letters, and poems that our members have contributed.

From BHostSTS

I thought this might help those of us who are caring for someone in the late stage of AD. This is from a pamphlet I received.

CARE FOR THE ADVANCED ALZHEIMER'S DISEASE

The Course of Alzheimer's Disease

Every person with Alzheimer's disease (AD) or a related disorder is unique. No one has the ability to predict which symptoms will occur or how rapidly the disease will progress with a particular individual. Even the most common symptoms vary in severity or may never appear at all.

What to Expect as the Disease Progresses

It is difficult to know when the disease has reached a terminal o. Pneumonia in the Elderly - A brief overview Betsy Finley, RN Pneumonia is a severe infection of the lungs. It may be caused by bacteria or a virus. Aspiration, the inhalation of food or fluids, can also cause pneumonia. This is often seen in ill persons or elders who have difficulty swallowing. Pneumonia is the fifth leading cause of death in persons weakened by age or chronic illness. These chronic illnesses may include, but are not limited to chronic lung disease [COPD], diabetes or end stage Alzheimer's Disease.

Symptoms

Younger people with pneumonia will display symptoms including cough, sputum [ or phlegm ] fever, chills, pain with breathing or obvious difficulty breathing. However, elderly persons may not always exhibit these classic symptoms. Some elders with pneumonia may not have any fever or chills and very little cough or sputum. Some may complain only of back pain. Often the elder will behave differently: they may seem weaker, disoriented or confused. This confusion is due to the infection causing a lack of adequate oxygen for the brain. The person with pneumonia may appear to have some increased difficulty breathing, that is breathing at a faster rate than usual. In all ages, when the chest is listened to with a stethoscope "crinkles" or "rattley" sounds may be heard. This is the sound of air moving through air ways or lung tissue that contain varying amounts of fluid. When no air movement or breath sounds are heard at all, the lung tissue may be completely filled with fluid.

Diagnosis

Pneumonia is usually diagnosed by a physical examination and additional testing which often includes blood work and a chest X- Ray. The blood test is looking for increased White Blood Cells, which are a sign of the body's attempt to fight infection. The Chest X- Ray is looking for signs of infiltrate or fluid in the lung tissue.

Treatment

The treatment of bacterial pneumonia includes the use of antibiotics to fight the cause of the infection. Viral pneumonia will not respond to antibiotics. However, viral pneumonia can lead to a secondary bacterial pneumonia which can be treated with antibiotics. Oxygen may be used for persons with severe difficulty breathing to make sure they are receiving adequate oxygen levels. Rest and fluids are important as well. Some people may take in adequate amounts of fluids by drinking. Others may need IV fluids if they are too weak to eat or drink adequate amounts. Recuperation from pneumonia may take several weeks. The person may feel very weak, tired and frustrated at their slow progress. Taking it easy will insure recuperation for most people. Persons with chronic illnesses may remain weakened after their bout with pneumonia.

The decision not to treat pneumonia

Some individuals who have lived with a chronic illness for many years, may opt not to have treatment for pneumonia, knowing full well it may end their lives. While some people are not comfortable with this decision, others are, and they may exercise this option when the time seems right. It is important to have this discussion with your family and your Doctor and to complete an Advance Directive to this effect. States vary in their laws so a discussion with your physician is imperative. As the infection progresses, the person becomes weaker and less responsive. Their ability to drink even small amounts decreases. Care givers provide comfort measures which may include medications for fever or pain; massage and support from loved ones.

Prevention

An annual flu vaccine is recommended for people over age 65 and those with chronic illnesses. The flu vaccine is based on a new batch of viruses every year and thus must be given annually. It is sometimes confused with the pneumovax vaccine. Pneumovax is given to prevent pneumococcal pneumonia. It is recommended for people over 50 or those with heart, lung or diabetes. In the past, one shot was felt to give adequate protection. Now it may be repeated after 5 years. Speak with your physician regarding these two helpful vaccinations. For those who are at risk for choking or aspirating food or fluids, a discussion with your Doctor may result in obtaining advice from a Speech Therapist or Dietitian. These professionals can assess and give advice regarding helpful preventive measures such as altering the texture or consistency of your food. Other basic, yet effective, approaches to prevent pneumonia include good handwashing to remove bacteria and viruses from the hands and avoiding being around those who are ill. Maintaining your health with good nutrition and exercise is also important.

Summary

Pneumonia remains a significant illness for elders and can be fatal in some individuals. It is important that all caregivers of elderly persons be aware of the potential causes and signs of this infection. When in doubt, ask your Doctor to examine the person to be certain this treatable illness is not overlooked.

In Passing: Those We Must Remember

From GivinCare

I just wanted to share that my mother, Marjorie Owens, after 8+ years of enduring Alzheimer's Disease, passed away Thursday, Mar 5th, 1998 at 7:18 MST. I gave her care at home through all but the last 4 months of you life, and she will be missed beyond measure. Her struggle is over, and for that I am grateful. But in giving her care, we became closer in ways I never dreamt I could be close with my mom, and this makes losing her that much harder for me. Making the decision to withhold treatment of the pneumonia and blood infection she had gotten was not was as hard as holding with that decision. Watching her die... Please keep us in your prayers. Sincerely, Debi Owens, Boulder, Colorado

Editor's Note: Folks please take the time to send Debi a note to let her know that you care.

From THE5DJS

My short story,,,,,I have my Motherinlaw living with me. as of last June, she was diagnose with dementia a few yrs back,,,but we didnt know this,, my short story is going to be to hard toexplain here,,,,so i am wondering is there a certain kind of Dr I can take her to that can give us a better explainion of this dementia? I have taken her to my family Dr. and wow i am still confussed. I am trying to do the best i can, and have to admit, I dont like this but knowone else will take her in. So i have called our local alzheimers ,,,,and i was told that sence she was diagnose with dementia she wouldnt qualifiy to come there. so here we sit. I just dont know where to take her for help, I guess the help I am looking for is,,,what i am to expect next? I have to go, hope you can make sence of this letter and hope to hear from you soon,,, thank you,, in the dark about demenica,, Joanne,,,

Editor's Note: If you have experience with this problem, please send Joanne a note.

From DKThomp

Over the last couple of years I have tried to write some of my thoughts in the from of poetry. It is not very good, but it says what I and many have surely been through. I will send one today with this note, you may wish to use it in the next newsletter.

WHO ARE YOU?
You tell me often that you love me.
I look at you, but my mind's eyes don't see.
I wonder, who are you?
I tell her often that I still love and care.
She looks, a blank stare that doesn't share.
She really doesn't know me anymore!
You hold my hand so gently and smile.
I don't know why, let me think awhile.
I wonder, who are you?
I hold her hand so that I might comfort her.
She flinches, her face shows a baffling blur.
She really doesn't know me anymore!
You take my arm to steady my walk.
Where are we going?
I don't like that talk.
I wonder, who are you?
I take her arm for it is good to go on long walks.
She always enjoyed walks, now in her mind she balks.
She really doesn't know me anymore!
You hold me in your arms while I cry.
Your gentleness makes my want to sigh.
I wonder, who are you?
I hold her tenderly to console her in her fears.
I try to comfort, but her mind no longer hears.
She really doesn't know me anymore!
O, Lord, I cry out to You our only succor to impore.
Her mind is going, but her soul is safe in the Saviour.
Someday we will know each other on that heavenly shore.
For we will both be whole again and with Him forevermore.
DOUGLAS K. THOMPSON

From SSabel2884

I was fortunate enough last week to attend a terrific seminar for "Adult Children of Persons with Alzheimer's" put on by the Central Indiana Chapter of the Alzheimer's Association. It was a truly terrific day, chock-full of information, extremely well organized and helpful. I thought I would share with everyone a poem that came as part of our handouts at the seminar. It moved me greatly, and I think the other Ribbon recipients will probably be moved as well. It was written by Kenneth Chafin and is entitled, "Remember Me."

Remember Me by Kenneth Chafin

When you forget your own address
and find yourself on strange streets, we'll sell your car,
and I'll drive you to all the places you need to go,
like you did for me when I was a child.

When you forget how to dress
and end up with three sweaters, two sets of panty hose, and a slip on over your dress,
I'll help you to look proper when you go out,
like you did for me when I was a child.

When the words on the menu don't match the pictures in your mind,
and you keep ordering things you won't eat,
then I'll order the food that I know you'll enjoy,
like you did for me when I was a child.

When finding your way at church is frightening,
I'll take you to your class and pick you up and let you sit with me in big church.
If the sermon seems long and you get sleepy,
I'll let you put your head on my shoulder,
like you did for me when I was a child.

When hot and cold faucets confuse you,
I'll put you in a tub of warm water and give you a bath,
like you did for me when I was a child.

When you forget who people are
and can't tell your family from total strangers,
I'll be your memory and tell you their names
like you did for me when I was a child.

When they're having a party for all the residents,
and you want to go but don't know what to wear,
I'll make you a costume that everyone will envy
like you did for me when I was a child.

When you forget who I am,
not just my name or my birthday, but that you ever had children,
then there isn't much I can do but go somewhere and cry,
like I sometimes did when I was a child.

Shannon

Around The Corner: By Henson Towne

Around the corner I have a friend,
In this great city that has no end,
Yet the days go by and weeks rush on,
And before I know it, a year is gone.

And I never see my old friends face,
For life is a swift and terrible race,
He knows I like him just as well,
As in the days when I rang his bell,
And he rang mine.

Yes, we were younger then,
And now we are busy, tired men
Tired of playing a foolish game,
Tired of trying to make a name.

"Tomorrow" I say "I will call on Jim"
"Just to show that I'm thinking of him."
But tomorrow comes and tomorrow goes,
And distance between us grows and grows.

Around the corner!- yet miles away
"Here's a telegram sir--" "Jim died today."
And that's what we get and deserve in the end.
Around the corner, a vanished friend.

Never be afraid to express yourself. Take this opportunity to tell someone what they mean to you. Seize the day and have no regrets. Most importantly, stay close to your friends and family, for they have helped make you the person that you are today and are what it's all about anyway. Pass this along to your friends. Let it make a difference in your day and theirs. The difference between expressing love and having regrets which may stay around forever. You've received this, because someone cares for you and it means there is probably at least someone for whom you care. Take this opportunity to set a new trend. Take a few minutes to send this to a few people you care about, just to let them know that you're thinking of them.

So there you have it, Your newsletter. This is a sampling of what type of things Karen and I get in the mail. We hope you will continue to contribute in the future as we get ideas from you which we try to expand upon.

Hugs and Peace,

Karen (KMenges581)
and
Jamie (DRMOM1955)