Volume 6, Issue 17
August 25, 2002

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

Dear Readers:

Since our last issue a lot has happened here. My grandmother had a stroke last Saturday. When my Sister-in-law and I took her to the ER her heart rate was in the 40's and dipped down to the 30's with a low of 31.

Needless to say, she was admitted. The doctor said we could put her in a nursing home with Hospice care. When it was time to be discharged.

What a decision to have to make. I now know what so many have felt when faced with that dilemma. It is horrible!

After much discussion with Mama, my siblings, and most importantly, with my family, I came to the final decision. Grandmother has come home with Hospice care.

I came to this decision after finding out that if I burn out or it becomes too much, ALIVE Hospice will place her either in their hospice facility or in a nursing home that they contract with. Should there be a slight delay in placing her, someone will be there 24 hours a day to replace me. Could you ask for more than that?

I am so in hopes that I can care for Grandmother until her time to go to her Final HOME.

I know I have the support of my family, the wonderful Ribbon Staff, you, our readers, and my wonderful friends at The Gathering Place. I wish I could thank each of you personally.

Jamie

Before I Forget

The PWiD's Perspective

A person wrote in saying that her Grandmother was telling people that she was stealing from her and hiding her things. She needed help in understanding this behavior. Our friend Carole wrote this in reply:

I don't know your grandmother or her situation, but (at least for me at this point), the conclusion that "someone else must have done X, Y, or Z" comes from my efforts to use logic in problem-solving. If the last time I remember seeing my car keys, they were on the kitchen counter, and they aren't there now, logic would demand that someone else moved them. I know that keys do not evaporate into thin air.

When you are the only other individual in my environment, my awareness of you is enlarged and that of the rest of the world is diminished. Unfortunately, sometimes I am not aware of what I have done or what you have done in the intervening time. It is not that I knew and forgot, but the knowledge was never recorded into memory. Memory making is literally protein synthesis according to Richard Restak in "The Brain the Last Frontier," and Alzheimer's plaques and tangles are comprised of broken bits of protein. It is evidence of a process gone awry.

If you can think of time-lapse photography, it is as if my mental camera only takes snapshots (makes memories) once for every ten times yours does. Taking snapshots so infrequently, all kinds of things might take place in between snapshots that I never perceive, making my awareness of the world a very strange and distorted place. The keys were on the counter the last time I remember. Now they are gone. You are the only other person around me. You must have done it. When the world does not work the way it used to, I spend a huge amount of time trying to "figure out" what is the matter with IT, not with ME. You see, the things we KNOW (like that keys don't evaporate) we still know with absolute certainty, and we are less aware that our cameras are slowing down. I don't experience the slowing...I experience the world seeming to move faster and faster, and in distorted ways.

Please don't take the accusations personally. They are not about your character or your motives, really. If the Lord himself were my caregiver, I would even then be trying to "figure out" my distorted world with the God-given logic I had relied on for life. Think of it: if your lungs began functioning only intermittently, wouldn't you still be trying to breathe with them? I hope you can be able to "stand outside" the accusations and character assassinations so that they don't damage you. And perhaps you can arrange for a trustee at the bank to help manage your grandmother's funds. The Alzheimer's Association in your area is usually a good place to find legal, financial, medical and care resources that suit your families situation. Their services are free.

I have found an interesting and simple book which might help you organize a larger support system for your grandmother. It is Share the Care . by Caposella and Warnock.

Good luck to you!
Carole Mulliken
"DASN International "A Voice and A Helping Hand"
"Knowledge is power. it is a balancer of hope, leveler of anger, controller of denial."

Helpful Hints for End Stage Feeding

Position: Upright for all eating and drinking!

Liquids should be thickened with "Thickenit" to aid in swallowing. Right now we are at Apricot Nectar thickness.

Use a Straw! Single sips and chin down.

A SOFT diet is anything that can be easily mashed with a fork.

Alternate liquids and solids. Alternate warm and cold. On the cold it shoud be with something tart such as "lemon ice", italian ice, or a popsicle dipped in lemon juice. This keeps the brain active and will allow the patient to get more food in them.

Make sure the first bite is completely swallowed before giving a second bite.

Keep in a sitting position for 15-20 minutes after eating to allow food to get to the stomach and prevent aspiration.

Just for GP

Hello Everyone!

We hit a major milestone at The Gathering Place the week of August 12; our web site counter registered 10,000 visits to The Gathering Place site in 2.75 years! I am so thrilled! Using our "Pay It Forward" concept, we have reached so many people that my mind is spinning. Thank you to all who have come and chatted. To those who are our "regulars" that have provided comfort and support to new people coming through our doors, please know you have been salvation for folks who did not know where to turn next. And to the folks who have helped as hosts over the years, a huge thank you to you as The Gathering Place would not have made it without you! A big heartfelt thank you to everyone for all their love and support!

Now...onto a question that is burning in our chatter's minds...When is the Gathering of Friends 2003 going to take place and, of course, where will it be held? Two very good questions! And for those of you who may be wondering, what is the Gathering of Friends (GOF), that too is a very good question. Briefly, it is a 3 day event where our Internet friends gather to support a local Alzheimer's memory walk, to meet the folks we have been talking to over the years, and to get "live hugs and support" from those whom we have come so close to through the Internet. In 2001, we met in Nashville, Tennessee. We impressed the Nashville Alzheimer's Association chapter so much, that our team of "Jane's Angels, Helping to Pay it Forward," was asked to be the lead team for the honorary lap (I still get goosebumps when I think about that)!

With that being said, we are looking for ideas from you, TheRibbon readers. We are looking for ideas of where to hold the 2003 event so our team, "Jane's Angels, Continuing to Pay it Forward," will be able to help out a local Alzheimer's Association chapter. Now mind you, we are pretty much open to any place, but the event will need to transpire around an Alzheimer's Association Memory Walk, so this will mean it will have to happen in September or October.

It has been suggested that GOF 2003 be kept centrally located so everyone has the opportunity to attend. Also, keep in mind it is a 3 day event. Everyone arrives on a Friday, walks on Saturday with a BBQ or dinner Saturday evening, Sunday is for a special excursion, and Monday was departure day. The other thing to keep in mind, is the location and proximity to airport and hotels.

No one will be in the organization of this by themselves. In 2001, there were 4 folks working on GOF and we were scattered from California to Florida.

So put on your thinking caps! I am bringing this up now so when you head out to your memory walks in the next couple months, you can speak to the organizers to see when the 2003 event will be. You can email me at the link in the signature block with your suggestions on where to hold GOF 2003. Can't wait to hear what y'all think!

Big Hugs and Love Always,
Linda@theribbon.com (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)

From the Recipe Corner

Seems we are just around the corner from the fall season. Lots of good food, apples, pumpkins, squash soups and stews. So send me your best recipes for the cooler season.

Our friend Bubba has come up with another great recipe, "Bubba's Shrimp Alfredo ," it is with all the recipes on The Recipe Corner.

I have a dear friend, who I will swear is the original 'Auntie Mame.,' and her recipe for 'Franky's Fantastick ' is now on the Recipe Corner site under BRUNCH.

Franky is a caregiver to a sweet lady in the first stages of dementia. The time and love she is giving is tremendous, and I was thrilled when she found time to send me a recipe. As I am with all the recipes I receive. I know the time it takes to be a caregiver (being one myself). So, this is a special THANK YOU to all off you who have helped with the Recipe Corner. Your recipes are being looked up, printed out and passed around many folks.

I appreciate all of you, and send my love and thanks.
Micki
Food Editor

Please visit our new Recipe Corner. There you will find delicious 'family favorite' recipes. Please help add to our collection by submitting one (or more!) of your favorites.

"Trips" Your Loved One Should Never Take

by Mary C. Fridley RN, C

Falling can be a serious problem for your loved one and you the caregiver. There are many causes for falling including neurological, low blood pressure, medication side effects, and visual impairments. It's important to have your loved one evaluated by a physician to find the cause. Once the reason for falling has been established, it doesn't mean the problem is resolved. So what can you do about it? Let's start with the environment.

Rid your home of throw rugs. Yes, they're pretty and Lord knows they hide many evils, but they are hazards to slip or trip on. Check electric cords. Are they run securely along baseboards or do they extend into walking areas? Take a good look at furniture arrangement. Is there a clear path for walking? Are there sharp edges that could cause injury from a fall? Be sure to check the lighting in your home. Are the rooms well lit with few dark shadowed areas? And what about clutter? Now is the time to purge your home of years of accumulated "stuff". The less clutter, the less chance of walking into or tripping over it. Use your common sense to guide you.

Another matter to consider, SHOES. Well fitting shoes are important. They should be sturdy, enclose the whole foot, have tie-laces or Velcro straps, and none-skid soles. Sneakers or tennis shoes provide poor support and the toes catch on carpets and floors. Check with a podiatrist if your loved one has bunions, hammertoes, or arthritis because orthopedic shoes may be needed. Shoes should be worn in the home, not just when going out. Slippers, stockings, socks, or bare feet are set-ups for falls.

Assistive equipment may also be needed like a cane or walker. A physical therapist can teach your loved one how to use it safely. The therapist will also teach you how to prevent self-injury when assisting your loved one to move. Request a referral from the physician for "gait training", Medicare will usually pay for this service.

Remember, it's important to identify any medical cause for falling…so, get your loved one to a physician for a complete evaluation as soon as possible.

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 provides community workshops and motivational seminars on eldercare, caregiver, and aging issues as well as writing articles and caregiver advice columns. 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@hotmail.com (geroresources@hotmail.com).

Help Wanted!

TheRibbon.com has been growing steadily for the last few years. This is a great accomplishment, and we are happy to be helping more caregivers. The growth, however, means a lot more time and effort contributed by The Ribbon staff. We're happy to do all we can, but right now we could use a little help. There are a number of jobs that don't take a lot of time or computer knowledge. We were hoping that some of you could volunteer a couple minutes a week to help The Ribbon grow.

Message Board Moderator

Two or three volunteers would check the message board (under construction) every day or two. Simply answer any posted questions you can (most will be practical "How do I...?" questions, not medical) and encourage the sharing of thoughts and ideas. This would be great for someone who has been caregiving for a few years and would be willing to share their knowledge. This job takes just a few minutes a day, at your convenience.

Site and Idea Testers

This one's real easy! We need 5-10 volunteers who could preview new parts of the site and give your opinions now and then. We may also send emails with ideas for small changes to the site and ask for your feedback.

Contributors

If you have an idea for a topic for our newsletter, please let us know. Also, if you find an interesting article, or can even write one yourself, send it in!

If you can volunteer a few minutes of your time for one of these jobs, please contact Kevin@theribbon.com. We're counting on your help!

--Kevin
Site Manager, TheRibbon.com
Care for Caregivers

Links

University Of Washington Developing Artificial Intelligence Caretakers For Alzheimer's Sufferers
www.sciencedaily.com/releases/2002/07/020724080121.html

"As my father lost the ability to do things for himself, my mother would give him gentle prompts to keep him on track," recalled Kautz, associate professor in the University of Washington's Department of Computer Science & Engineering. "So at a stage of the disease where, according to the clinical scales, it would seem he couldn't do anything for himself, he could still perform many of the functions of life. He could shower, get dressed, and so forth because my mother would monitor him and give a prompt when needed." It's a recollection that has guided Kautz in initiating a research effort at the UW to explore ways in which computer science can compensate for diminished mental capacity. The Assisted Cognition Project is a collaborative effort by the UW, Intel Computers and Elite Care, a private company developing a state-of-the-art retirement community in the Portland area that utilizes so-called ubiquitous computing to keep tabs on residents' needs. The project partners envision a network of digital devices and wireless sensors – in the walls of homes, in appliances and furniture, even in the clothing we wear. The devices would work together to do essentially what Kautz's mother did for his father: monitor an individual, offer prompts when appropriate and summon help when needed.

Buck and Buck Designs
www.BuckandBuck.com

You might want to share this link with the folks...they also have an 800 #. This is the folks that Mama's nursing home uses for clothing for it's patients. They even have a section for just Alzheimer's patients.

From NiteOwl0512@aol.com

Education for Alzheimer's patients and their families
http://www.rush.edu/patients/radc/resources/manual.html

The staff of the Rush Alzheimer's Disease Center in Chicago has developed a helpful guide for those caring for relatives with Alzheimer's disease or a related dementia. Originally published in 1990, the manual was completely revised in 1994, updated in 1996 and again in 1999

You can download for free in PDF format or you may order the manual for $14.95 with the order form on the site.

From Sandy

Email Bag

From jleehawaii@aol.com (Jeanne)

Thank you so much for the book review. I hope to have information on where to buy it and when soon, aloha Jeanne

From LauraW64@aol.com (Laura)

I am writing for two reasons: to thank you and to ask you to remove me from your mailing list. I find myself writing the same letter that I have read many times in The Ribbon: my Dad with Alzheimer's/Dementia passed away on June 20. He died peacefully with all his kids around him and we tried to make his death as painless as possible. I will no longer need The Ribbon, but I know where to find it again if I need or decide to delve into caregiving again.

I want to thank you and all the chatroom facilitators for the special job that you do. Your caring and mere presence not only help us caregivers but also increases awareness everywhere about our plight. For example, my Dad spent his last 5 weeks in a nursing home. My Dad's journey and our grieving was supported by the most wonderful team of nurses. Yes, they respected my father and eased his pain but they eased and understood our pain as well. I really believe that you at The Ribbon have been pioneers in caregiver understanding and people like you have made specialized Alz/Dementia care closer to the norm and not the exception. With love, I express my gratitude!

Laura
LauraW64@aol.com (LauraW64@aol.com)

Hugs and Peace,
Karen and Jamie