Volume 6, Issue 25
December 13, 2002

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

I'm getting this issue written up on Friday the 13th. I'm sitting here at my computer while I wait for all my family to arrive for Mama's Family Christmas. I've got approximately 3 hours before the first group arrives. I've got cornbread in the oven and giblets boiling in order to get a head start on tomorrow's Christmas feast.

I've been doing a lot of thinking lately as I've been going about getting ready for Christmas this year. I've been up and I've been down. This is the first year that I've had such conflicting emotions.

Christmas has always been my most favorite time of the year. This year I've spent some days crying. I am usually singing carols all over the place and this year has been fairly quiet. Too many things are going through my mind.

As I was wrapping presents and I put one item in a gift bag, I remembered how Nanny kept trying to peek into her presents last year. My great friend, Linda (PHOTOLJT), told me to put one item of Nanny's into a gift bag and place it at the front. I had such a good time watching Nanny's enjoyment as she got to peek into one of her presents time and time again. That made me smile and cry at the same time.

Farther down in this issue will be a note that Carole wrote in answer to a lady who Lives with Dementia and is not feeling the Christmas spirit this year. Carole had such good suggestions. I plan to embark on some of these things next year.

After Nanny and Grandmother had died, my good friend, Dean sent me a great link called "When I Need To Fall Apart". I will put it in the LINKS section. It is a great poem that lets us know that it's ok and that we will be ok.

I know that once my siblings and their families get here, some of this hurt will ease and I will once again be my happy self. I love my sister and my brothers. They have helped me so much just by keeping in touch.

Remember.......there is no Present
like your time!

That slogan can be found on many of the items in our Caregiver's Store(Link: http://www.theribbon.com/carestore/ )!

Shop Online! - TheRibbon.com(Link: http://www.theribbon.com/shop/ )
www.TheRibbon.com/shop

I hope you and your's have a Save and Joyous Holiday!!

Jamie

Before I Forget: The PWiD's Perspective

Carole wrote this in answer to Mary who shared with the DASNI mail list that she wasn't feeling the Christmas Spirit. Mary mispelled spirit and it came out sprite and Carole loved it.

Hello Mary,

LOL, I like the idea of a Christmas "sprite!" You can be one yourself, you know. The spirit of Christmas is in the giving, so let's give! Here's a plan:

As soon as Thanksgiving is over, have someone take you to a gift store with Christmas decorations and music. Buy yourself a Christmas music CD and a box of Christmas cards. See if you can find one of those Christmas pins with tiny red lights in the center. Or buy a Santa Claus hat with a jingle bell on it. Stay in the store long enough to soak up the Christmas feeling, and buy some candy canes or individually wrapped peppermint candies.
When you go home, put your Christmas music on and write personal messages on Christmas cards to the people you visit for Meals on Wheels. Bake some home-made Christmas cookies if you are able to. You could also buy them.
Between Thanksgiving and New Year's Day, make sure every meal you deliver comes with a personal Christmas card and a cookie or candy cane. Be sure to see that it is delivered by a smiling Christmas sprite -- you! I wonder if it would work to spice up a Christmas card with a dab of peppermint oil, or vanilla or cinnamon?
If the person is willing to give you a telephone number, tell them you will call them on Christmas day. Keep playing your Christmas music, and make those calls with music in the background. Start each call with a shake of the jingle bells.
You can repeat those giving moments as many times as you like by visiting nursing homes and VA hospitals. It will keep your hand in the cookie jar throughout the season.

We with dementia simply have to try a little bit harder to continue to contribute.

Happy Holidays, Mary,

Carole M.
www.DASNInternational.org

DASNI: Dementia Advocacy and Support Network International(Link: http://www.dasninternational.org/ )

Leaving Home

by Mary C. Fridley RN, C

No one is ever ready to make the heart wrenching decision to move a loved one from home to assisted living. But the time may come when it's necessary not only for your loved one's good but yours.

I'm frequently asked how to find the "right" assisted living facility. I caution caregivers by saying that the right facility for someone may be the wrong facility for your loved one. What is pleasing and important for one can be distasteful and unimportant to another. Also keep in mind that it will not be "home", so some adjustments and acquiesces must be made. You should also be aware that there are many styles and sizes of facilities out there. Some are large accommodating 16 or more residents, while others house as few as three. Some look and feel like hotels, while others are very home-like. When seeking an Assisted Living Facility always use your loved one's preferences as a guide, not yours. Knowing your loved one's life style and what appeals to his or her senses will make the search easier. However, there are some important things to look for when "shopping":

Is the facility able to provide the level-of-care your loved one needs? If you aren't sure what that level-of-care is, call the local Area Agency on Aging for guidance and request an evaluation.
What kind of training does the staff have and do they get continuing education?
What is the staff to resident ratio? Will your loved one get the attention he or she needs?
What safety measures are in place like call bells, lifeline, or alarmed doors?
Are special diets offered? How are the meals prepared and by whom? Will they cater to your loved one's food preferences?
Can your loved one bring some of his or her furniture and personal items?
Can you stop by unannounced? If the answer is no, pass on this one.
Are there any bodily waste odors? If yes, residents may not be adequately attended to.
Is the home clean and inviting from your and your loved one's perspective?
What activities are provided and how often?
Are there other residents who share your loved one's interests and will he or she be able to establish friendships with them?
Are there any complaints, judgements, or deficiencies against the home? Check with the Area Agency on Aging at the local or state level.

Keep your loved one involved in the decision-making after-all it will be his or her home.

Remember that staff can't replace the love and attention of family. Most important, remember that your role as a caregiver doesn't end. You may need to be his or her eyes, ears, and mouth, so don't be afraid to speak up and advocate for your loved one's care.

Blessings for a happy holiday season.

~Mary

Mary C. Fridley RN, C is a Registered Nurse board certified in gerontology with more than twenty years experience in the geriatric health field. She provides community workshops and motivational seminars on caregiver, eldercare, and aging issues as well as writes articles and caregiver advice columns for websites and publications. 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 (geroresources@comcast.net).

Links

From CGlaughter@aol.com (Chip Gerber)

Creating a Calming Environment [PDF format](Link: http://www.alzheimers.asn.au/PDFFiles/HelpSheetsTh eEnvironmentAndDementia/Creating%20a%20calming%20e nvironment.pdf )
http://www.alzheimers.asn.au/PDFFiles/HelpSheetsTheEnvironmentAndDementia/Creating a calming environment.pdf
I have found this article interesting and helpful.
Chip Gerber

From Datel123@aol.com (Dean Datel)

When I Need To "Fall Apart"(Link: http://morningspiritliftjuly.homestead.com/01.html )
http://morningspiritliftjuly.homestead.com/01.html

We don't always have to be strong
to be strong. Sometimes our strength
is expressed in being vulnerable.
Sometimes we need to fall apart to
regroup and stay on track.

Email Bag

From CAREVOICE@aol.com (Brenda Avadian)

Hello Ladies,

I spent a little over an hour searching the WORLD HEALTH ORGANIZATION's (WHO) website for this statistic.

Sometime ago, I saw the statistic that 18 million people worldwide have Alzheimer's....that's 7 million more than the 11 million worldwide estimated by the American Alzheimer's Association in 1998.

Attached is a two-page MS Word document (Click here to view(Link: http://www.who.int/archives/whday/whd2001/others/N ori%20Graham%20(Alzheimer)%20statement%20WHD%20200 1.en.doc )) presented for the WHO's World Health Day in April 2001 that states that the Alzheimer's Disease International cites 18 million due to most of the aging population being ignored or excluded because, quite frankly, they are old. And until more people are educated about this disease, sadly this will be the case...loved ones in other countries will be institutionalized in similar facilities we used to use in the 40s through the early 70s here in the US--sanitariums, mental institutions.

Note the English use of "s" for recognised and other words instead of the "z" and also the use of "carers" (more frequently used in Europe) for caregivers (more frequently used in the US), and ageing (Europe) instead of aging (US).

Please feel free to share with others.

Smilingly Yours,
Brenda Avadian, M.A.
The Caregiver's Voice
Speaker and Author, Finding the JOY in Alzheimer's:
Caregivers share the JOYFUL times and
"Where's my shoes?" My Father's Walk Through
Alzheimer's (also AVAILABLE in Audiobook,
the German language, and "¿Dónde están mis zapatos?" in Spanish).

Editor's Note: If you are interested in receiving the MSWord Document, you can send an email to Jamie@TheRibbon.com (Jamie@TheRibbon.com) and I will forward the document to you. It will be as an attachment.

From Bubbierg@aol.com (Bubbierg)

My husband Eddie, now 76 years old and entering his eighth year after AZ diagnosis, has been in the eighth stage for a long time. Fortunately we are financially secure and I have been easily able to care for him at home with the help of an outstanding live-in student and the services of a marvelous adult day care center and a great full service dementia medical clinic. Now Hospice is helping us periodically with advice and equipment.

I know that we have been lucky because Eddie has been a compliant patient and because I have a calm disposition and am not easily frightened. Despite the inevitable rough moments, I have generally appreciated this special stage in our 52 year marriage.

Last week I attended a funeral of a fine man who had suffered AZ for at least a few years. Like my husband, he had had a sharp mind, ambition, courage and had achieved career success. He too had a loving family, and the financial wherewithal to afford very good care. His wife loved him dearly but was unable to cope with home care, so he was moved to an assisted living facility and received lots of attention from his daughter and from a professional care giver. But unlike my husband, he was sad about his condition and longed to be at home. While he was in stage five, he developed some severe bladder and lung problems and died a few weeks later.

The reason for this note: At his funeral, I heard the family and comforting mourners say, "It was fortunate that it didn't last too long." Everybody seemed so sure that was true. Maybe so, in their situation, but not in ours.

I know that Eddie, as he used to be, would be horrified at the state he is in. But the Eddie that now is, enjoys moments of his life each day. And I am comforted by his warm cheek or arm when I sink into our bed. My children and grandchildren, all living hundreds of miles away, delight in their visits to him and are proud if they occasionally get a fleeting response or a mumbled gurgle of a word. I was glad when his doctor suggested a weekly antibiotic as a prophylactic against lung or bladder infections common in this final stage. I will not prolong Eddie's life with artificial tubes etc. but I don't want to rush the end either.

I don't care if people privately criticize me for exposing Eddie to public view in movies and restaurants. I sense that he is enjoying these experiences, at least on some level, and that is all I care about.

I am not a martyr and have had many interesting experiences in addition to Eddie's care. I believe that life -- even a restricted life-- is a precious gift. Eddie is comfortable, not frustrated and I am grateful for these remaining months.

I know our story doesn't fit every situation and we have a lot going for us that others sadly lack. But neither is it true that every last stage patient and their families would be better off if the end comes quickly. Each case is unique.

From me.allen@juno.com (Mary Emma Allen)

Hello,

I'm pleased you were able to use my story in this issue. I hope it will help lessen the guilt of other caregivers who can't bring their family member home for holidays.

Thanks for the great work you're doing with The Ribbon.

Mary Emma

Mary Emma Allen
Author/Illustrator/Speaker
When We Become the Parent to Our Parents
http://homepage.fcgnetworks.net/jetent/mea
me.allen@juno.com (me.allen@juno.com)

From CAREVOICE@aol.com (Brenda Avadian)

Dear Gloria,

I was taken by what you wrote in The Ribbon. You son is certainly a FIGHTER! Having a stroke at such an early age and then having to deal with the struggles of growing up potentially with this disease.

You do not indicate how you and he know he has dementia...was he diagnosed by specialists? My memory is not clear on this...but if indeed he has dementia, he may be one of the youngest in the U.S.! Perhaps, if you could learn more from specialists (if you have not yet already), you may find lots of support as these specialists would be interested in helping you since he would certainly be one of the youngest. Furthermore, once you know for sure (if you don't already) then it will be easier to confidently speak to other's lack of knowledge.

Also, you need to learn which type of dementia he has...once he has been formally diagnosed. However, a specialist...a neurologist or even a geriatric physician can tell you for sure...Your doctor should refer you to one...It is certainly in your right to know what is really going on with your son.

Please feel free to write to me after you learn more...or simply update The Ribbon as well.

From dkranz@gmu.edu (Debbie Kranz)

Thank you so much for sending this to me. My mom has recently been diagnosed since moving here to VA from NY last year. I'm an only child and they moved to be closed to my family and me but it's been one problem after another since they got here. Each day has been particularly trying my dad (who also has his own set of health problems) and has always lacked patience to begin with.

Anyway, she's on Pazil and Aricept at the moment. We have a dr's appt. this week and I'm thinking of switching her to Exelon. Any thoughts which works best? She keeps thinking that someone is living in her attic ( we've brought her upstairs but she still insists) and she can't sit still in her home. She's in a 55 and older retirement community and constantly runs up to the main lodge to just converse with the employees. It drives my dad nuts!

Thanks for listening,
Debbie Kranz

HAPPY HOLIDAYS TO ALL!!!

Hugs and Peace,
Karen and Jamie