Volume 6, Issue 16
August 11, 2002

www.TheRibbon.com
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I think we've all heard that being a carepartner to someone with Alzheimer's or any other Dementia is a roller coaster ride. I have certainly experienced that in the last few weeks.

My grandmother, next door, went from being wheelchair bound and very restless, not knowing if she wanted to lie down or be up and in the living room, to now being able to walk unassisted with her walker. She can even get up from a sitting position by herself!

I was being called by my Mother every time Grandmother needed a move. Mama is unable to help do this so she is to call me. It seemed that I was no more getting back to my house than the phone would ring. Grandmother needs to potty, or Grandmother wants to lie back down, or Grandmother wants to get up. I hated to hear the phone ring! I wanted to break it!

Finally I told Grandmother that if she wanted to get up then she would have to STAY UP for at least an hour. If she wanted to lie down then she would have to stay there for an hour. Well, if looks could kill I'd have been one dead duck.

Imagine my surprise when I went over to wash a load of clothes a day or so later and there was Grandmother sitting on the couch. I had put her to bed...how did she get in here?..and where was Mama? Well, Mama was taking a nap and Grandmother had walked all by herself into the living room.

Mama and I just shook our heads, laughed and figured out that all Grandmother needed was to get mad enough to do it herself. I no longer dread the phone ringing because Grandmother only needs a little help in the evenings when she is sundowning.

Such is the roller coaster ride that we all are passengers on. Should we name it The MindBender?

Jamie

P.S. This was written for the last issue but there wasn't enough room to include it. Grandmother did really well until today. Today she cannot walk and can hardly sit up by herself. I'm keeping my fingers crossed that this too shall pass....ah well, just another downward slide on the rollercoaster again.

The Caregiving Years

by Denise M. Brown

In previous issues, we have covered Stages 1 through 5. Today we end the series with the final stage.

Stage 6
The Godspeed Caregiver

My caregiving has ended.

Who are you?

Your role as caregiver ended more than two years ago. You find yourself compelled to make a difference in the lives of other caregivers. You share information readily with caregivers in the earlier stages, or you start a business dedicated to helping family caregivers, or you find a job in which you assist family caregivers. And, you treasure each relationship you have in your life, recognizing that each day, and your health, should never be taken for granted.

Your Keyword: Treasure

Treasure your dreams; treasure your opportunities to share lessons learned; treasure memories of your care recipient.

Your Purpose:

To implement your lessons learned from your role as caregiver, from your care recipient and from your family members and friends. During this stage, which can last as long you wish--even your lifetime--you reap the benefits of your efforts.

As a "Godspeed Caregiver", what can you do?

1. Follow your dreams.
   Make your goals your achievements.
2. Family caregivers will look to you as a mentor and leader.
   Allow caregivers in earlier stages the same freedom to stumble and steady themselves that you had. All worthwhile journeys have trips and wrong turns; the journeys become meaningful as we learn from our mis-steps.
   
   Share your experiences with expectant caregivers, freshman caregivers, entrenched caregivers and pragmatic caregivers. They can learn from you! (Many of the books, web sites, audio tapes and videos which helped you along your journey were developed by Godspeed Caregivers. !)
3. Treasure the memories you have of your care recipient.
   Continue to remember your care recipient regularly through rituals, such as enjoying an ice cream cone in her honor on her birthday, or by planting trees in her name. Reading and reviewing your diary will be a great way to remember.
   
   Of course, your best memorial to your care recipient's memory is a life you build for yourself filled with healthy relationships, productive careers and joy and laughter.

Web Link
>>Resources that can help Stage 6 Caregivers

What do you think? Send your comments, thoughts and suggestions about your caregiving journey to denise@caregiving.com.

Caregiving.com: Helping You Help Aging Relatives
www.caregiving.com

Working With Your Doctor: Tips for a Successful Visit

By Stacey Skala, MSW
Alzheimer's Health Education Initiative Coordinator
Alzheimer's Association of Los Angeles, Riverside & San Bernardino Counties

With Michelle Plauche, M.A.
Associate Director of Patient, Family and Training Services
Alzheimer's Association of Los Angeles, Riverside & San Bernardino Counties

Poor communication in the doctor's office can turn a good visit into a bad one. You can make the visit better by partnering with the doctor to get the best health care possible for your loved one.

In an effort to improve the quality of health care for people with Alzheimer's disease and related disorders, the Alzheimer's Association has launched an Alzheimer's Health Education Initiative. One goal of the Initiative is to educate caregivers on how to communicate and partner with the doctor in order to get the best health care for their loved ones. The communication tips below are taken from "A Caregiver's Workshop: Creating a Partnership with the Doctor When You Suspect Memory Problems," a free workshop that is currently being offered throughout the state of California. Due to its success, this program will expand nationwide beginning in July 2003.

Be Prepared

If you want the best health care for your loved one, you must go to the doctor's office prepared! Research shows that people who plan ahead for their doctor visits get better health care than those who do not come prepared.

You can prepare for the doctor visit by bringing with you:

• A list of all of your loved one's medications, including prescription drugs, over-the-counter medications, and vitamins or herbal supplements.
• A diary or 'care log' of any changes in your loved ones mood, health, or behavior. Keep track of the date and time when these changes occur. Be specific: When did it start? How long does it last? Send the log in before your appointment AND bring it with you to the visit.
• A list of your top three concerns. It is easy to get overwhelmed or sidetracked before or during the doctor visit. Look over your care log and write down your top three concerns or questions since your last visit. By writing this information down, you don't have to worry about remembering it.

Be Active

• Ask questions. If you don't understand something the doctor says, ask again by saying something such as, "I'm sorry doctor, but I didn't quite follow what you just said. Can you please explain it to me in another way?"
• Take notes. Don't try and remember everything that the doctor says. Instead write it down during the visit, after the visit, or use a tape recorder.
• Talk to the doctor about your role as a caregiver. Let the doctor know that you spend the most time with the patient and can provide valuable information about day-to-day activities and any changes or concerns in-between doctor visits that the patient may not be able to communicate.

Restate and Agree on a Plan

• Repeat back what the doctor has said at the end of the visit, such as: "Okay, we should sign up for Safe Return, exercise during the daytime, take this prescription daily, and call you if there are any sudden changes, right?" This is your chance with the doctor still there to clear up any misunderstandings or for the doctor to repeat something you may have missed.
• Agree on a treatment plan that you or your loved one will be able to follow. If you know you can't do something, let the doctor know why and ask what else you CAN do.

Schedule Your Next Visit

• Ask the doctor how often you should visit and schedule your next appointment before you leave the office.

For a listing of workshops in California, or to download a copy of the informational Working With Your Doctor When You Suspect Memory Problems booklet, visit http://www.caalz.org

To download and print copies of care logs, medication logs, or a top 3 concerns worksheet: visit http://www.alzla.org or email stacey.skala@alz.org to request electronic copies.

To contact the Alzheimer's Association for information, call 1-800-272-3900 or http://www.alz.org

Editor's note: We have checked all this out and find it very informative! We think these workshops will be of great help to all of us. We can't wait until they come to our local chapters! As always, The Alzheimer's Association continues to work to help us help our loved ones!

Memory Walks

Just a gentle reminder that it's time to start gathering sponsors for your local walk.

Last year, due to the September 11th attack on the World Trade Towers, people were donating to that cause. The Alzheimer Association took a huge hit because everyone was "donated out".

Please remember that the Alzheimer Association exists because of donations and Memory Walks are their major fundraisers.

Just for GP

Hello Everyone!

It has been so exciting at the Gathering Place (GP) this last week. When I got to the room Thursday night, I found 13 folks having a wonderful chat; of that 13 there were two brand new visitors who were having a magnificent time visiting with new friends. One visitor has enjoyed chat so much, she forwarded this message to TheRibbon when she subscribed to the newsletter, "The Gathering Place is the warmest and the most informative caregiver chat I've found." Comments like that make it all worthwhile.

One item that was discussed at length in the last couple of weeks which might be something for you to think about: If say, heaven forbid, a fire, tornado, hurricane, any type of unexpected disaster were to happen, how would you go about getting your loved one to safety. For example, where I come from, it is tornado country. If the tornado siren sounded, we headed to the Southwest corner of the basement with the radio and flashlight. Fortunately, when the siren sounded my Dad was still ambulatory and could get down the basement stairs to safety. But what if he could not do that? It has been suggested that you go to a room in the middle of the house that has no windows. It has also been suggested going into the bathroom and to get into the tub, pulling the mattress from the bed over the top of you. Something to think about!

Hope to see you all in the coming week. Maybe you could provide us with some ideas! Have a great week!

Love Always,
Linda
Linda@theribbon.com
The Gathering Place
Online Alzheimer's Caregiver Support
http://www.theribbon.com/GatherPlace/
Contributor to Finding the Joys in Alzheimer's (page 76)

Book Review

Just Love Me reveals the thoughts and emotions of a woman struggling with a life suddenly become unmanageable, then with hospitalizations, suicide attempts, and finally with an arduous search for an accurate diagnosis. From looking at the youthful, vital and attractive woman before them, for years doctors never suspected the culprit to be Alzheimer's Disease. It was. Jeanne Lee's book joins only a handful of other books written by persons living with early-stage dementia.

This book should be "required reading" for anyone with even the least contact with a person with dementia, whether of the Alzheimer's type, Frontal Lobe {or Pick's Disease), Huntington's Disease, multiple sclerosis or any number of other degenerative cognitive conditions.

Whether birth, marriage, friendship or profession relates you to someone with dementia, in Lee's book you will learn much not taught in medical books.

The author's very personal, candid description of her life experiences before, approaching and during the early stages of AD enables readers to better understand people with dementia. By getting inside the mind of the author and experiencing with her the worries and frustrations that tormented her then and now, the symptoms of Alzheimer's become less enigmatic for the reader.

Tragic News

It is with regret that we inform you that Dear Abby and Charleston Heston have both been diagnoised with Alzheimer's Disease. Our hearts go out to them and their families as they start this journey.

Penny for Your Thoughts

Perhaps in this case, "till death do us part" isn't best option

If a husband is in a nursing home, should the wife date or have an affair?

I might be opening myself up to some criticism here, but I'm going to say that it depends. If the person in the nursing home (as, of course, your question really applies to either sex) has Alzheimer's or is in a coma and therefore has no idea that his or her spouse even exists, then I don't see why the healthy spouse should suffer even more by staying in isolation. I don't know if the person should go out looking for a sexual partner, but he or she should get out of the house, and if he or she were to meet someone and it developed into a romance, then I think that's all right.

On the other hand, if the spouse in the nursing home has his or her full mental abilities and can provide companionship, if not sexual satisfaction, then I think the healthy spouse should not have an affair.

In getting married, you agree to share both the good times and the bad times, and so until that person dies, he or she deserves your full support. But if the person in the home is incapable of understanding that you are giving such support, then I do believe this changes the circumstances enough that such vows no longer hold.

Ask Dr. Ruth
Ruth Westheimer
The Tennessean
July 30, 2002

We are quick to try all we know to do in giving advice to the new caregivers, but who cares for the caregivers themselves? How are we really, physically helping them? Moneys are provided for research. Support groups are there to give encouragement and guidance. But it is my observation that the caregivers themselves are a dedicated group of elderly people. They are strapped financially - most of the time. Most are retired...most are also very tired. Not all of them are in excellent health. They can spare neither time nor energy for anything. Their love and devotion is dedicated to caring for a person whom they cherish.

Social Services can advise, but they can't just drop by with a bowl of soup, or spend an hour or two with the patient and allow the caregiver to be free to take a breather. The caregiver neglects to take care of himself/herself...gets overtired, blue, angry, frustrated, frightened. And yes, the Support Group helps with some of that. Still, the caregiver is afraid to take a long, relaxing bath or go for a quiet hour alone in the park, cannot restore themselves.

This is not an easy job. 24/7 is the name of the game. Self-pity? Yes, once in a while. Fear? Always lurking in the shadows. Tired and weary? Most of the time. So how can we CARE for these loving Caregivers?

rabbitmother@earthlink.net
Born and raised in Oklahoma, 80 years ago. Attended schools there for 16 years. Was studio engineer at radio stations KTOK and WKY in OKC during WWII . Married Donald Daniel. Two sons(both over 50 now). Have done some writing: Essays To Myself; Keep Doing It Until You Get It Right; Dialogues With Donald; A Symphony Of Mine Own. I was solitary caregiver for Donald until four months before he died two years ago

Medical News

July 24, 2002 -- The world of Alzheimer's disease research just moved into warp speed: Through a trans-Atlantic partnership, scientists have discovered a way to accurately "see" inside the brains of living Alzheimer's patients. Using this new technology, the views inside the brain are striking: Brains of the Alzheimer's patients light up like a Fourth of July fireworks display, while images from healthy brains look like muted still-life paintings. Although the discovery isn't a treatment for Alzheimer's disease, it does provide the first opportunity for scientists to accurately test and quantify the effect of new and existing treatments. Speaking at a news conference at which the new discovery was unveiled, William Thies, PhD, Alzheimer's Association vice president for medical and scientific affairs, fought to keep his enthusiasm in check but couldn't resist saying that the finding "will increase the rate at which we can develop new medications for Alzheimer's disease."

When an old lady died in the geriatric ward of a small hospital near Dundee, Scotland, it was felt that she had nothing left of any value. Later, when the nurses were going through her meager possessions, they found this poem. Its quality and content so impressed the staff that copies were made and distributed to every nurse in the hospital. One nurse took her copy to Ireland. The old lady's sole bequest to posterity has since appeared in the Christmas edition of the News Magazine of the North Ireland Association for Mental Health. A slide presentation has also been made based on her simple, but eloquent, poem. ...And this little old Scottish lady, with nothing left to give to the world, is now the author of this "anonymous" poem winging across the Internet. Goes to show that we all leave "SOME footprints in time"....

An Old Lady's Poem

What! do you see, nurses, what do you see?
What are you thinking when you're looking at me?
A crabby old woman, not very wise, Uncertain of habit, with faraway eyes?
Who dribbles her food and makes no reply When you say in a loud voice, "I do wish you'd try!"
Who seems not to notice the things that you do, And forever is losing a stocking or shoe.....
Who, resisting or not, lets you do as you will, With bathing and feeding, the long day to fill....
Is that what you're thinking? Is that what you see?
Then open your eyes, nurse; you're not looking at me.
I'll tell you who I am as I sit here so still, As I do at your bidding, as I eat at your will.
I'm a small child of ten ...with a father and mother, 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-my 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 guide and a secure happy home.
A woman of thirty, my young now grown fast, Bound to each other with ties that should last.
At forty, my young sons have grown and are gone, But my man's beside me to see I don't mourn.
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, I shudder with dread.
For my young are all rearing young of their own, And I think of the years and the love that I've known.
I'm now an old woman ...and nature is cruel; 'Tis jest to make old age look like a fool.
The body, it crumbles, 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 over again.
I think of the years ....all too few, gone too fast, And accept the stark fact that nothing can last.
So open your eyes, nurses, open and see...
Not a crabby old woman; look closer ...see ME!!
Remember this poem when you next meet an old person whom you might brush aside without looking at the young soul within.
... We will one day be there, too!

Email and Snail Mail Bag

From Keyso@aol.com

I want to thank The Ribbon for many excellent articles that helped me so many times. I believe the tears they caused had a cleansing effect too. It was always such a great comfort to know others were "walking the walk" I believe you have to have been there to truly understand.

With my Mother being gone a little over 6 months now I will give up my spot on the mailing list to someone who needs you more than I do. As much as I enjoyed The Ribbon and all it stood for, I hope I never need it again. Keep up the good work, God Bless!

Gayle
Doxgirl

Dear One,

Would you please send me some papers on Oldtimers? To let me know more about it. My husband has it. He is 75 and I am 65 years old.

Thank you so much,
Rosie

From Currby4@aol.com

I have really enjoyed "The Caregiving Years" that you have been putting in the newsletter!!
Thank you,
Laura

Hugs and Peace,
Jamie and Karen

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