Volume 6, Issue 1 - The Ribbon Newsletter

Volume 6, Issue 1
January 6, 2002

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

Happy New Year

We have a feeling this is going to be a big year for all of us here at The Ribbon which in turn means great things for you, our terrific readers. We are growing and along with that growth are really great people. We are getting permission to use more articles, more people are contributing whether via articles, poems, or just responding to the newsletter in email.

Kevin and a special lady have been working very hard lately on a new section to be added to our website. It will consist of quick and easy recipes for both the person with Dementia and for the caregivers. These recipes will be tried and tested by Micki before they are put up on the site.

Our special lady is Micki and her screen name is Slats2 but you can email her at Micki@TheRibbon.com. Does anyone have a suggestion for this section? If so, let us know.

Kevin has also been tweaking the site a bit. When you go to read an article or issue you now have the choice of printing in regular size print or large print. When we get the Message Board back up, you will also have a choice to click on "Discuss this" and it will take you to the message board to talk about what you've just read.

Don't forget to Shop at The Ribbon for birthdays, special days and holidays that come up during the year. Shop Online! - TheRibbon.com Remember that what little proceeds we get from this help to defray our costs which we now pay out of our own pockets. We will NEVER charge for our services. All of this means too much to us in our effort to Pay It Forward.

Here's to a Great New Year!!!!

Snail Mail

We'd like to welcome our readers. They come to us not through the computer but through the US Postal Service. They are Lou from California, Terry and Nina, Patty, and Judith from Tennessee, Alfred from Maryland, and Buster from South Carolina.

Please join us in welcoming them to The Ribbon. Normally we do not welcome everyone in the newsletter itself because we send out a personal email. Since this is done via USPS we thought it would help them feel a part of our "family".

Again, we always try to make it a point to never use last names in order to protect privacy.

I am late in getting this in but thought Kevin deserved the space and recognition.

In the Nov.7, 2001 issue of Maryland Gazette, Kevin was The Teen of the Week. The article was on page 2, middle of the page with a nice big picture of Kev at his computer with The Ribbon website on the monitor.

A passion for helping
Teen's Web site aids Alzheimer's caregivers
by Jenny O'Grady

Visit TheRibbon.com and you'll probably figure it was designed by an adult.

The format is tight, the features technologically advanced. Even the subject matter--information and support for Alzheimer's caregivers--suggests someone a lot older than 17-year-old Kevin created it.

But that isn't true at all. The Glen Burnie teen just happens to have a passion for helping others.

"I think it's amazing to be so young and care about people who are older than you," said Marge, who occasionally hires Kevin to watch her mother, Dorothy, who has Alzheimer's disease. "A lot of them couldn't care less."

Kevin, 17, a freshman on full scholarship at the University of Maryland Baltimore County, came up with the idea after having a difficult time finding Alzheimer's support group information online for Marge. At the time he was only 14.

While online he discovered a chat room for Alzheimer's caretakers and a related newsletter, but it was available only by snail mail.

"I was just sitting at McDonald's one day and I thought it would be great to have a Website where people could go and get all the newsletters and information all in one place," he said. "I thought it would be accessible to a lot more people that way."

Since it's launch in August 1998, the site has had more than 19,000 visitors. It also has grown tremendously, now offering a chat room, newsletter archives, a "dedication garden"--where people can write about Alzheimer's patients and choose from a selection of flower pictures--and a message board.

Kevin's mother, Debbie, said her son's devotion is not unusual.

"He's just been around people who have needed help all his life," she said, such as her homebound father. "It was normal to him."

Web design is Kevin's favorite hobby, though he is studying computer science in hopes of working in hardware. He spends several hours each week updating the site, the text of which is supplied by women across the country who originally started the chat room, titled "The Gathering Place."

"We were just blown away, we had no idea how young he was at first," said Jamie of Nashville, a coeditor of The Ribbon. "It's so helpful to people. They'll hear about it, and they'll go to it and they can relate to other people there."

Editor's note: I left out last names as some people do not wish them to be known. Now even more people know how special "our" Kevin really is. Also we have gotten new readers and visitors to The Gathering Place from this article.

A reader has been talking to me in reference to a problem that has been happening. I'm not really sure how to handle this situation as I've not seen it brought up before. Please read it and help this reader by sending in any advice or helpful hints you may have.

I will tell you the story as best I can. In order to protect privacy, I will refer to the characters as Mom, who has just had surgery for ovarian cancer and has a prognosis of living for probably 1 year, Dad, was recently diagnoised with Alzheimer's Disease, Son, who has a full time job and has been taking care of Mom and Dad in their home until recently, DIL,(daughter-in-law), who has been involved in caregiving, running errands, etc and who also has a full time job.

Just a bit of background, Dad has always been a strong-willed type of man. Mom has pretty much not stood up to Dad in order to keep the household peaceful and Son has his Mom's peaceful qualities.

Well, Dad and Mom were in a car accident earlier this year. It totaled out the car. Insurance paid a sum of money for the car. While in the hospital, Mom was found to have the Cancer and soon after Dad was diagnoised with AD. Everyone got to come home until time for Mom's surgery. During the wait time, Son was able to get Power of Attorney, get his name on the bank accounts, and start helping Dad with bills, etc. DIL spent a lot of time running errands, cooking, washing, and generally taking care of Dad and Mom.

Mom had her surgery and it has spread so that is why the 1 year prognosis. She had to go to a Nursing Home to recooperate and since Dad wanted to be with her, Son and DIL were able to find a NH that had two beds. Mom is on the Rehab floor #1, until she no longer needs the rehab and then she will be transferred to floor #2, and Dad is on the Alz floor #2 which is like Assisted Living. Dad is allowed to go down and spend the day on floor 1 with Mom.

Since the move, Dad has become irate with Son and especially DIL. He is accusing them of spending his money and he wants his check book. He says he is going to go home. Mom will not stand up to him, Son and DIL think that possibly her mind has been a bit affected by the surgery. Son or DIL cannot get a moment to talk to Mom alone. Dad is always there when they can get there. He will not leave the room.

Son finally takes a copy of bank statement to Dad. Dad carries it around for a few days getting more and more irate. Son calls neurologist and he prescribes Risperdal. It helps somewhat, Dad is quite as irate but still plenty mad.

Dad continues to threaten to leave the NH. Son and DIL are told that there is nothing the staff can do to hold him because he is self-pay and it is not a locked unit.

Son and DIL have a meeting with staff and they are told that parents cannot go home without someone with them full time. They told Son and DIL that if parents are allowed to go home and something happens that Son and DIL can be charged with negligence.

Son and DIL arrange a time to speak to parents. Lay it all out on the line for them, explain the cancer, explain that they cannot go home without someone there to help them. Dad is upset. He says that they hate it there but cannot give any instances of why. Mom says the same thing. Dad doesn't want to discuss Mom's cancer, Mom doesn't join in the discussion about it.

Two days later, Son gets a phone call at work. It's Dad. "Where are you Dad?"

"I'm at home". Dad had walked out of NH. Walked quite a few blocks to a car dealership, talked them into letting him test drive a car and he went home. Salesman left him there.

Dad tries to get neighbor to take him to bank. Neighbor refuses. Dad calls Son. Son says wait there. Dad says he is going to bank to get money to buy a car. He has already called a cab. Son says I'll meet you there.

Son gets to bank and Dad is talking to the teller. Son is able to get Dad to his car so they can talk before money is withdrawn.

Son tells Dad that he cannot come home that there is no one to take care of them full time. Dad will not hear this. They go back to NH and are informed that the NH can no longer be responsible for Dad. Staff does not think he has Alzheimer's Disease. DIL asks "So you are doing a total reverse of what you told us just a few days ago?" Staff said yes.

Son and DIL are stumped. What are they to do? Son did tell Dad that when it is time for Mom to be released out of Rehab he will have a list of rules that Dad HAS to follow in order for them to come home. Number one on that list will be NO DRIVING. Son is now in process of getting Dad's driving privileges revoked.

Ok that is where the story stands. What are Son and DIL to do? Do you have any suggestions, advice, or if you faced the same situation what did you do?

I think this is an emergency situation and needs attention ASAP. Please get your answers in as fast as you can. These replies will be sent straight on to these readers and then will be printed in the next issue.

An Idea Coming of Age?
Get Ready for New Wrinkles in Long-Term Care Insurance
by Tim Smart

Americans worried about how to pay for the medical and personal care they'll need in late life can expect to hear some new ideas nextyear on how long-term care insurance might be made more available—and affordable.

New ideas, experts say, are needed in an industry whose products over the years have tended to be extremely expensive—and sometimes so complicated that an average person can't understand them.

Another obstacle hindering its appeal to consumers: the mistaken belief among large numbers of Americans that Medicare covers nursing home and in-home medical expenses. Medicare doesn't cover these expenses on a long-term basis. (See Many Are Mistaken about Their Coverage—a Problem of Perception.)

Read the whole article and many more at www.aarp.org/bulletin
AARP Webplace

DASNI

Happy new year, everyone. I see that Lynn and Christine have beat me to telling you about the new "Shared Experiences" booklet from the Alzheimer Society of Canada. It was launched yesterday as part of our annual Alzheimer Awareness Campaign that happens every January. I also want to invite you personally to visit some new sections of our Web site at www.alzheimer.ca which I tell you about below.

"Shared Experiences: Suggestions for those with Alzheimer Disease" is a booklet and a 40-minute audiotape. You can get a free copy of both (free if you are in Canada) from your local Alzheimer Society chapter (see the Contact Our Offices page at www.alzheimer.ca; the link is in the orange bar at the top of every page), or order it directly through our Web site. Go to the "Resources" section and click on "Order Form."

You can also listen to the audio files online if you have RealPlayer or RealOne (we include a link to download them) and speakers on your computer.

Also, we have completely reworked the "I Have Alzheimer Disease" section of the site. I invite you to visit and let me know if it's helpful to you:

www.alzheimer.ca/english/haveAD/intro.htm

Finally, we have a brand new section called "Creative Space" (at www.alzheimer.ca/english/creativespace/intro.htm). We built this new section to give an opportunity for people to submit their own creative expressions about their experiences with Alzheimer Disease. The section includes "The Writing Room," where visitors are invited to submit pieces of creative writing, such as poetry, fiction, etc., and another section called the "Art Gallery." In it, you can view paintings by people with Alzheimer Disease. You are also invited to submit any photographs of your own artwork.

Please send any feedback directly to me at webmaster@alzheimer.ca. I'm eager to hear what you think.

Ellen Agger
Webmaster
Alzheimer Society of Canada
www.alzheimer.ca

Email Bag

From HOST iVH Jude

Your newsletter is so excellent, such a support and joy for all who read it.Thank all of you for the wonderful work you do here.

Judy

From wewells@peoplepc.com

Dear Karen: This is the saddest time of my life! I wrote to you about six months ago and you published my message. My husband had his left leg amputated in January of this year. He has dementia and has been a diabetic for over 20 years. Although I was advised against it, after two months in a nursing facility, I took him home. He is over 6 feet tall and I am 4 ft. 10". We did ok until in Nov. he started to get some sores on his right foot and they did a bypass to help the blood flow. The operation was successful, but what it did to him otherwise is unbelievable. He has changed so much. I had him home for one week and it was a week of horror. I ended up with black and blue marks and did not sleep more than four hours at a time. He had to go back into the hospital for debreding of his incision and just this past Wed., Dec 19, six days before Christmas he was put into a nursing home. I am heartbroken. My son who lives in Georgia was here and he said that is the only thing I can do. I also have a daughter in PA and she agrees. I have many friends here but at the present I am so bogged down with getting him settled, and arranging the financial parts of the problem, I see no light at the end of the tunnel.I knew this might come some day, but I did not think it would be this soon Your ribbon messages have helped me a lot but I have difficulty getting into the chat room. I get into the gathering web site but do not know how to actually get into the messages. Have a great holiday and a wonderful birthday. Sadie ((wewells@peoplepc.com))
Ps.Ilive in Florida

Hugs and Peace,
Karen and Jamie