Volume 7, Issue 13
July 13, 2003

www.TheRibbon.com(Link: http://www.theribbon.com/ )
1104A Murfreesboro Pike
PMB 114
Nashville, TN 37217-1918

The last couple of weeks have been pretty nice. I had a wonderful 4th of July. We went to my daughter's house to shoot fireworks. It's legal there and the sky was just lit up all over and it was beautiful! The grandkids were having a great time watching and then holding their own sparklers. I don't know who had the most fun though...my 19 year old son or my 30 year old son-in-law. They were the main two doing the lighting and running. It was a very nice night that we all enjoyed.

Today I got my Advance Reading Copy of Finding the JOY in Alzheimer's ~ Volume 2: When Tears are Dried with Laughter(Link: http://www.thecaregiversvoice.com/books/joy_alzhei mers_2.asp )by Brenda Avadian, M.A. Linda (IPHOTOLJT) had mailed it to me and addressed it to me and then Caregiver of The Year. It was really cool that the substitute mail lady (Patty) is who got to deliver it to my mailbox. Patty gets The Ribbon delivered to her via USPS. I was out mowing the front yards when she pulled up. I waved and she motioned for me to come over. She congratulated me and gave me a big hug. That was so special. I was able to answer a couple of questions for her as her Mom has Alzheimer's Disease. This very much brought home how many people are dealing with this disease and how much I continue to want to help as many as I can.

Now I have to tell you a little funny. As you know, Nick, my husband has MID AKA Vascular Dementia. He has always been awful remembering birthdays including his own so now it's even worse. Well....since he and my son work in construction together they've both been out of work for a few weeks and money is a little tight. They just got back to work Monday so I told my son that we would wait until next weekend to celebrate Nick's birthday so he would have a full paycheck and could get his dad something. We weren't going to let Nick know that the 11th was his birthday.

Well, Thursday night I was working at the computer and Nick was sitting in the recliner next to me. He looked over at me and asked "What's today's date"....well, I couldn't lie so I told him it was the 10th. He said "You mean tomorrow's my birthday?" I said yeah it is. He said "You mean y'all have forgotten my birthday?" I did lie then and tell him yeah I guess we did. He was so excited all the next day...he didn't wait for anyone to tell him Happy Birthday, he would walk up to each of us and say...Happy Birthday to ME! He had busted us, (which we'll never tell him), and was so happy he remembered his birthday!

Jamie

Before I Forget

A PWiD's Perspective

This is written as a response to a letter written to the DASNI email list. Carole has given us permission to use it here.

You said,

"I believe my brother is in denial, he thinks he is going to "train" dad not to be mean by refusing to help him in any way, shape or form when dad is mean."

Unfortunately dementia changes one's behavior, and frequently for the worse. We get overwhelmed very easily because so much of our brainpower is gone. To make matters worse, it is the logical, reasoning, problem-solving parts of the brain that go first. When those parts of the brain are "peeled away," it is only the most primitive parts of the brain that control our behavior. The primitive brain knows only fear and aggression, so when it is overwhelmed, it tends to lash out in fear and anger. To make additional demands on your father would probably make things worse, in my opinion.

One way I look at it is this. NOBODY in the world gets up in the morning and asks, "How can I make myself miserable today?" We all do the best we are capable of doing, given the resources we have on that day.

Your brother needs to understand that those of us who have dementia have capabilities that fluctuate from day to day. On some days, I can balance my checkbook, but on other days I am so incapacitated that I can't even write a check. We don't like being dependent on others for caring for us.

Those who must depend on their own children feel just that much worse about it. Your dad still knows that he should be caring for you, the young children he remembers. He may not even realize how mature and competent you two have become.

When you say he "won't" learn new things, please understand that most likely he CAN'T learn many new things. Along with loss of memory comes loss of new learning ability. The areas of the brain where new learning occurs are being destroyed. Somehow people with early dementia understand that, so we focus on learning only the things most important to us.

I have learned how to find my way around the little town I live in because it is important to me to be able to get home again. I haven't even tried to learn the names of the neighbors on my block, or how to work the VCR. In my mind, those are things taken care of by others so that I can remember when and how much insulin I should inject. Even though I used to read two newspapers each day and watch the six and ten o'clock news, I don't read papers anymore because they hold too much new information for me to learn. And I don't watch much TV -- news or otherwise -- because all the violence and crime against people I don't even know upsets me too much. Those strangers seem unimportant now compared to the daily struggles I have with managing my own existence.

Does this make me "indifferent" to the well-being of others? Perhaps. But in my mind, it only means that I feel myself close enough to sinking that I need to save myself first.

Another way of putting this is not that "You can't teach an old dog new tricks," but rather that the old dog itself will decide which of the tricks is important enough to struggle to learn. For your dad, it is an enormous struggle just to understand what someone is trying to communicate to him. He is not trying to be mean-spirited or difficult. Sometimes various medications can help him with the emotionality he feels. And definitely, you and your brother could benefit from caregivers support groups through the Alzheimer's Association nearest you. It is a huge and demanding task that you and your brother have undertaken. The Association can lead you to the resources in your area.

Hope this helps,

Carole Mulliken
Vascular dementia, age 56
www.DASNInternational.org(Link: http://www.dasninternational.org )

Human or Saint?

I've had several people talk to me lately about losing their temper with their loved one. All have asked how did I give care without losing my temper. I'm here to tell you that this is something most people will not talk about. I'm NOT a saint because I'm human and I've lost my temper many times.

You've been asked the same question time and time again....you pop off and yell or not very nicely say "I've answered that question a dozen times in the last 15 minutes!" "Don't ask it again!"

You have been called a thief, a liar, a prostitute....you've heard enough. You turn around and again say "If that's the way you feel then get someone else to take care of you!"

Now you've said things you wish you hadn't.....oh such guilt! You are thinking, "I know it's the dementia, it's not my Dad, Mom, Grandparent, Spouse, etc. Am I fit to continue to be a carepartner/caregiver? Others wouldn't be doing this, no one has said they lose their tempers and lash out. I'm not able to do this job in a loving caring way."

Good news is here for you. You are HUMAN!!!! I tell carepartners/caregivers the main thing that is needed to be heard. Are you doing your best? Is there more you can possibly do given your circumstances? If you are doing your best, the best is all you can do. Can anyone give more than their best? No, it isn't going to happen because the best is all you can do.

What you need to do when you feel that your temper is going to flare is to get away from the situation. Go to another room and count to 100. Take slow deep breaths as you are counting. Cite your mantra...It's not my __________ (Spouse, Mom, Dad, etc.) it's this awful disease. Another thing you can do before the calm down period is to take your anger out on your pillows. This helps to get it out of your system and you will have the nicest and fluffiest pillows in town. When you have calmed down you can go back and deal with the problem at hand.

Another tactic is to divert....change the subject to something that is more pleasant to both of you. Get your loved one doing something...folding towels, watching TV, eating, looking at photos, anything to distract them.

If you feel that you want to strike your loved one, it's time to get some help in IMMEDIATELY! While you are waiting for someone, you get outside and walk around to distance yourself from your loved one. You must not stay in the same area in order to keep yourself from blowing up and striking out. Call your local Alzheimer's Association and see if they have a respite program. Tell your family that you need some time off and TAKE IT. If you are at this point, you need a break!

I hope this helps some of you feel better about the job you are doing. I don't know of a single saint among us. We are all human and doing the very best we can do. It is a hard job both physically and mentally and we need to face our limits and know what to do when we've reached them.

Jamie

Hello Everyone!

In the last issue,I wrote about heading off to attend another fantastic event; the pre-launch for the newest best seller: Finding the JOY in Alzheimer's ~ Volume 2: When Tears are Dried with Laughter(Link: http://www.thecaregiversvoice.com/books/joy_alzhei mers_2.asp ), authored by Brenda Avadian, M.A., which was held in Lancaster, California.

What an absolutely wonderful five days this was. My friend, Loraine, and I drove up to Brenda's a day early to help with any last minute details. I fear we didn't help much, but what fun we had! Friday, June 27, found us on a major aerospace extravaganza along with Debbie, Danny and Kevin. Lancaster is aerospace heaven as it is home to Lockheed and Edwards Air Force Base. Add in to that, we got toursof both of these facilities' aerospace museums AND of the Blackbird Airpark AND lunch at a fun place called "Wing and a Prayer" with the cutest F-22 pilot in the world, I can safely say we were in airplane heaven!

Friday evening was an all to special event; it was the Contributor's Reception (which was made an international affair with the attendance of one oftwo Canadian authors, Carl). This was for authors, poets, and/or photographers. What a wonderfully intimate evening Brenda hosted. This was Brenda's way to honor each of us; placing everyone in their very own spotlight. It was an evening spent visiting and inscribing books for each other. As is the case when Brenda does an eventsigning, she personally inscribed each of our advanced reading copies. As she did this, she took time with each person, sharing the inscription with them, truly making them feel they were the author of the book.

Later in the evening, Debbie Center and her children, Joel and Deanna, wowed us with their musical talents. At one point during this fun, a comment was made how it would be nice to have a country piece played. Magically enough, someone, who does not know how to read music or tune in the radio, just happened to have the sheet music to Alan Jackson's "Where Were You" (When the World Stopped Turning). Debbie did a wonderful job playingthe piece(this just happened to bring the fun of Jamie's award for Caregiver of the Year full circle for me)!

Then it was upon us, the mystical day we had been anticipating for eons: the pre-launchfor that newest best seller: Finding the JOY in Alzheimer's ~ Volume 2: When Tears are Dried with Laughter(Link: http://www.thecaregiversvoice.com/books/joy_alzhei mers_2.asp ). As you are aware, I submitted a story and a poem which were chosen by Brenda, for inclusion. Additionally, many submissions were included from TheRibbon and The Gathering Place friends (DrMom1955, Tracy1952, Meemawmoe2, Ukel, Ed, Lynno, Pampmom and Earthmover, PianoMam, Willorain, Rabbitmother, LTU - you get the picture here - you too can also submit something for possible inclusion in Volume III - submissions are being accepted now).

Additionally, our very own Kevin@theribbon.com (Kevin@theribbon.com), TheRibbon.com webmaster, had a major part in this event as he and Brendaunveiled Brenda's new Internet website, TheCaregiversVoice.com(Link: http://www.thecaregiversvoice.com/ ). It was so much fun to see Kevin presenting the website with over 80 people in attendance for this event. He was even rubbing elbows with the mayors of Palmdale and Lancaster (who respectively presented Brenda with proclamations naming June as Finding the Joy in Alzheimer's Month and June 28, 2003 as CaregiversVoice.com Day).

After the conclusion of launch, there was a fabulous dinner. Oh my gosh, Resse, did an outstanding job on a grand Cajun meal, authentic to the end! Approximately 30 folks were treated to thedelectable fare! Before, during and after the meal, Ms. Brenda had a few things she still needed to say. Prior to the meal, she honored our host, Michael, with a plaque for his continued support and friendship. As the meal was finishing up, Brenda presented our Kevin with a plaque commending him for his wonderful work on constructing her new website (and as had happened earlier in the day, Kevin was big time blushing).

Then...as if this wasn't enough, Madam Avadian turned the tables on me. She announced that this had been a day of births so to speak, that it had been the birth or launch of the book and also of the website. She went on to belabor the fact that it was also my birthday. Uh oh...I had a funny feeling I was gonna be in trouble (remember, always trust your gut instinct)!

The floor was turned back over to our host, Mike. He announced that he had a long standing tradition in his home for first time birthday folks visiting; I was invited to participate in a treasure hunt. At first I thought he was pulling my leg, but he went on to state that it was a tradition started long ago in his family and...he did this just as recently as six months ago for his 24 year-old stepson. Double uh oh! How could I refuse a tradition? So, off I went with 30 folks trailing behind me. To the kitchen, to the dining room several times, the back yard, his personal aerospace museum, the artist room, the electric car outside and finally, back to the dining room where there was a cake, cards, Pepsi presents from Loraine and yes, one final presentation from Brenda. Yup, you got it, a wonderful plaque, which, by the way, made me cry! What a wonderful end to such a perfect day!

But wait...the launch wasn't it. How could you top that you are thinking? Well...Brenda topped it all by taking six of us to Hollywood and Beverly Hills on June 29th. I think the drive down was more entertaining than the tours. Poor Debbie Fisher, Ms. Careful Driver, had to follow Brenda down the very busy California freeway at speeds of, well, let's just say that she was yelling at Kevin, "IF YOU EVER DRIVE 90 MILES AN HOUR, I'LL KILL YOU!" It was as if Debbie was glued to Brenda's bumper, she followed so well! When we stopped to drop Debbie's car off she was so shaken, her knuckles where white, and as she got out of the car she was saying, "I've never driven like that before!"

Oh yeah, back to the tours! We got to drive down Hollywood and Vine. Madam Tour Guide was so patient. She dropped us off in front of Mann's Chinese Theater so we could look at the stars in the sidewalk and the foot/hand prints of all the stars. I think she had to circle five or six times so we could see everything. There were TV characters who would pose with you (for a tip) in front of Mann's as well.

Then it was off for the chase; to find what makes Hollywood "Hollywood". The Hollywood sign. Any tour book will tell you, ya can't get close to it. That didn't detour Brenda! Nope!No siree; she was gonna get us as close as possible! After stopping a very nice local person out for their jog asking her for directions, we wound our way up to probably the best vantage point for this icon of Hollywood. We all piled out of the vehicle and take turns getting photographs with Hollywood looming over our shoulders (this picture will show up in the Fisher's hometown paper). From there, we did a tour of the stars homes, past and present. Even trespassed on at a new home under construction - it was so cool had a view (if you could see through the smog) of the whole LA Valley! Brenda topped off our star home tour by driving past the Reagan estate.

But...but...but...Wealso got to go toBeverly Hills. Madam Chauffeurdrove us down Rodeo Drive! How cool! We saw stores that you would only dream (hummm...dream...sounds like a familiar theme) about shopping in. Brenda let us choose a store to visit. Ok...Tiffany and Company! Debbie and I were in diamond heaven! To make a long story somewhat shorter...that part of our tour ended with me on my cellphone to my cousin, Pat (who loves diamonds), telling her that I just had an emerald cut diamond, 11.77 karats, nearly perfect inside, D class, set in platinum, on my hand. I am telling you...it was so much fun! Oh, the price you are wondering? Only a mere...$953,000! The sales tax on that baby was $78,000 plus! It was so funny, each time it would pop into my head I was tell the crew, "an 11.77k freaking diamond!" Heck, when I woke up the next morning, my first words to Brenda's husband David were, "Hey David, an 11.77k diamond ring!" All he could do was laugh!

Loraine and I had a great drive home. We laughed, had a little cry, sang to the tunes of Lion King, just cruised right along. Poor Loraine, when her husband got home from work that night, she didn't get to get a word in edge-wise to him! You know what he heard, don't you? "An 11.77k diamond ring!"

The rest of my time with Loraine (and Little Mama) was spent by Loraine sharing with me the location of her top-secret Pepsi collecting store! Oh what fun I had in there. "Oh Loraine, look at this! Oh...look at that!" Loraine, "I know, I have that!" GRRRRR! I do believe she is the Pepsi collector of the century!

So there you have it. I am sorry it is so long. There was just so much and I didn't want to leave anything out! Everything was so grand! So, Iwill close by saying: Madam Brenda, Ms. Tour Guide, Ms. Chauffeur, thank you so much for making so many feel so special. The memories each of us took away will last a life time. Oh and by the way..."An 11.77k freaking diamond ring!"

Love Always,
Linda
www.TheRibbon.com/GatheringPlace(Link: http://www.theribbon.com/GatherPlace/ )

Caregiver Identification

Haveyou ever wondered what would happen to your loved one if something happened to you? Most of us have thought about this in terms of us getting a major illness or possibly dying before our loved one.

Here's another thought for you. What would happen if you've run to the store, bank, cleaners, etc and you had a wreck or you fainted. How is anyone going to know that you are a carepartner/caregiver to someone with Alzheimer's Disease and that person is home alone with no one to check on them?

Most are aware of the Safe Return(Link: http://www.alz.org/ResourceCenter/Programs/SafeRet urn.htm ) program run by the Alzheimer's Association. This is a very important program for our loved ones. Did you know that a lot of them offer Caregiver Identification also?

The Alzheimer's Association, Mid South Chapter in Tennessee offers a Caregiver Bracelet or Pendant for an additional $5.00 when you sign up for the Safe Return program. This chapter also offers scholarships to pay the registration fee for Safe Return. In researching I've found that the fee is usually $40 to $45 dollars. Check with your local chapter to find out what is offered and the fees and whether there are scholarships to help pay the fee.

This is what happens:

A person with dementia or their caregiver registers in the program (for the one-time fee) by filling out a simple form, supplying a photograph and choosing the type of identification product that the registrant will wear or carry. This information is then entered into a national database.

If that individual wanders and is found, the person who finds him can call the 24-hour Safe Return toll-free number located on the wanderer's identification wallet card, jewelry or clothing labels. The Safe Return telephone clinician immediately alerts the family members or caregiver listed in the database, so they can be reunited with the individual who wandered.

If a person is reported missing by a family member or caregiver, Safe Return can fax local law enforcement agencies the missing person's information and photograph. Local Alzheimer's Association chapters provide family support and assistance while police conduct the search and rescue.

The Caregiver Identification will have engraved on it the fact that you are a caregiver to a person with Alzheimer's Disease and will have a contact name and phone number. Police and Medical personnel know to call that person and have them go check on the person you care for.

Some suggestions that were brought up in The Gathering Place(Link: http://www.theribbon.com/GatherPlace/ )Support was to type up a card with the following information:

I AM A CAREGIVER TO SOMEONE WITH ALZHEIMER'S DISEASE
IF I AM UNABLE TO TALK TO YOU, CONTACT THE FOLLOWING
PERSON AS MY LOVED ONE MAY BE HOME ALONE
Name of person with AD
Contact person's name
Phone numbers (remember to give all numbers..work, home, cell)
Secondary contact person
Phone numbers

You can tape, paper clip or otherwise attach this to your driver's license, put a copy with your vehicle insurance card, and keep a copy in your wallet. Be sure to update it as necessary.

Notify the persons you have named that if they are ever called in an emergency situation they are to go and check on your loved one immediately. You are being taken care of so they need to make arrangements for your loved one first.

Another suggestion is to get an ID bracelet and have it engraved yourself. Have the notice where information can be found engraved on it.

Get a Medic Alert bracelet or pendant and have it engraved yourself. This is just another way you are caring for the person you love.

Jamie

Links

Scientists learn why stress can kill(Link: http://www.msnbc.com/news/933118.asp )

A STUDY focused on 119 men and women who were taking care of spouses with dementia. The health of the caregivers was compared with that of 106 people of similar ages who were not living under the stress of constant care giving.

Blood tests showed that a chemical called Interleukin-6 sharply increased in the blood of the stressed caregivers compared with blood of the others in the test. Previous studies have associated IL-6 with several diseases, including heart disease, arthritis, osteoporosis, type-2 diabetes and certain cancers.

Read the whole story by clicking on the link above.

From Karen@theribbon.com (Karen)

Monitoring Mom(Link: http://www.technologyreview.com/articles/innovatio n10703.asp )
As population matures, so do assisted-living technologies.

This article is well worth reading as it lets us know what all is being worked on to help those how have dementia and to aid those of us who give care. Amazing things such as sensor devices attached to dishes to record when dishes are used to make sure eating is taking place....plus the ability to cue a person when necessary.

Monitors to record when there is activity. When there has been no activity a phone call is placed to let caregiver know that something is wrong.

This is terrific technology that we have to look forward to.

From Kevin@theribbon.com (Kevin)

Gathering of Friends

So far we are looking at approximately 20 people coming to GOF '03. This does include me and my family too. Have you been thinking about it? Now is the time to let us know that you are interested. Our first deadline is Tuesday! By letting me know now it will give me an idea of how many rooms will be needed at the hotel. This is a bargaining point and I sure intend to use it to get the best prices I can.

Believe me when I tell you that you will have a great time. You will find someone who shares your interests. There is always someone to talk to. You will make new friends that won't desert you when your caregiving duties keep you homebound. There will be both men and women there.

We have fun, we participate in the Memory Walk, we have a Memorial Service, we do a bit of sight-seeing, and we talk A LOT. This is a great respite weekend!

If you think you would like to attend, please send an email to GOF Info@aol.com (GOF Info@aol.com) and let us know how many people and how many rooms you will need by Tuesday. This does not commit you as we do understand things happen when you are a caregiver.

If a little urge is saying "I would really like to attend but I don't know these people" rest assured, you will be welcomed with open arms at the airport or at the hotel if you drive. We are all caregivers and we are a special kind of people...we have a unique bond that draws us all together. So send in that email!!!

Email Bag

From Dglennox1019@aol.com (Diana)

Hi Jamie,

I wanted to let everyone know how important having a friend, clergyman and family is that they can talk to. Of course you and I have been each others' sounding board for many years.

You already know of my decision to bring Hospice in to take care of my Mother. After talking with you and talking with Hospice I truly feel this is the right decision.

Hospice isn't something we talk about often at the Gathering Place. I suppose because all of us in that support group are caregivers for loved ones in all different stages and all kinds of dementia. It's scarey and so many people think that they just can't let them die. So many questions come to mind. Am I being selfish for letting them go? Can I let them go? Am I being selfish for NOT letting them go?

Hospice was at our house today to admit my Mom to the program. There will be a home health aide out here tomorrow. Even though I have loads of information and have done an equal amount of research, actually going through this is a whole different journey.

What it boils down to is my head knows this is the right thing to do. My heart aches because it IS the right thing to do.

I truly believe I love her enough TO let her go. I know I will still need all the help and support I have been getting, maybe even a bit more, from all of you.

I wanted to take time to thank you all as my journey begins to come to an end. There is no real way to tell exactly when the end will come, but I know I will be a much stronger and knowledgeable person because of it. I would not trade the time Mom has been living here for anything.

Again, thanks to everyone. I am hoping you will publish this in TheRibbon.com because I wanted to thank each and every single person and was afraid I might forget someone in the middle of all this.

Love and Hugs,

DianaL

From Currby4@aol.com (Laura)

To Teen.............. You spoke of swinging on the porch swing and having a conversation with your mom about "losing her mind"

ohhhh did that bring back memories of when I realized what was happening to my mom. She cried, I cried. She asked me to never let her look dumb in front of anyone........I have tried my best to keep that promise to her. This disease has no time limit and the day to day watching of a loved one go through this is just about as much sadness as anyone can take. I don't know how I do it, I know why I do it.................

I would say to you to keep on consoling and loving........I don't think you will have a hard time with that, you sound loving.

Thinking of you, Laura

From jleehawaii@aol.com (Jeanne)

Congratulations to a well deserved Jamie. I have taken care of 3 but one at a time and now that I have Alzheimer's I give you so much credit for doing it with such patience and style. You have helped so many to make caregiving a loving thing instead of focusing on the chore part. It is such a calling I agree and to those who accept for any time are to be congratulated. Aloha Jeanne

I want to thank The Ribbon for being so kind to my journey of advocacy for the early stage dementia and medications. I will be touring the western United States and Canada with my "Alzheimer's Awareness" the group I have founded and am working towards a non-profit status so that I am able to do more for the cause. My disability of $713 per month just does not allow for much travel nor printing of articles to hand out. I will stop at 16+ cities via train/ bus/ car from August 5 to Sep 17. I will do a book signing or two and a Dementia/Dasni lecture also. I want you to know your site is in some of my printed literature as one of my favorite/ most informing sites to check out. Aloha Jeanne

From dwyshak@webtv.net (Diane)

The website StemCellAction.org(Link: http://www.stemcellaction.org/ ) is informative. The Portraits of Hope biographies brings it home. Diane

Hugs and Peace,
Karen and Jamie