Volume 5, Issue 17 - The Ribbon Newsletter

Volume 5, Issue 17
August 19, 2001
www.TheRibbon.com
1104A Murfreesboro Pike PMB 114
Nashville, TN 37217-1918

Gathering of Friends

What a response we have had!! So far there are approximately 20 people coming to Nashville, TN in October. We are so excited and impressed with the response.

We have had a new development come up. The Nashville Alz Assoc. Memory Walk will be held the morning of Saturday October 6. Guess what? We have decided we will participate in Memory of Jane Levy(AlzJane198). We will decide on a Team Name (Jane's Angels has been suggested) and we will be representing The Ribbon and The Gathering Place. Gather your sponsors now!! If you need an Official Contribution Form please email DrMOM1955 and one will be sent back to you via email that you can print out.

If anyone should want to sponsor our team, please email and we will give you the information you will need. It is our hope to make Jane proud of us and to help the Alzheimer's Association in the work that they do.

There is still time to make plans to join us. You actually can come at the last minute if need be, but in order to get a GOF t-shirt we need to know you are coming by Sept. 1. All GOF attendees please let DrMOM1955 know your t-shirt size ASAP. We have to have time to get these shirts done.
Remember to pack your walking shoes!!!!

The Ribbon Staff
The Gathering Place Staff

Stages of Alzheimer's Disease
(adapted from Helpnotes, Alzheimer's Association, in italics, with added comments from an 'insider's perspective')

Stage 1 - Mild (may last 2-4 years)

We need you to be patient and understanding. I'm in this stage when I'm rested and well, and taking tacrine regularly.

Apathetic, less sparkle

Because we're not able to follow everything going on around us, and we're worried we might say or do something silly if we have missed what is really happening.

Less interested in hobbies, activities

Because we get exhausted so easily now, as our brains have to work harder to do what used to be easy.

Unwilling to try new things

Learning anything new is very difficult, and we need so much repetition from you (the person trying to show us how to do something) that we know we will annoy you.

Unable to adapt to change

We get very confused, as our memories of how to do things the 'old' way are firmly fixed in our remaining brain, but something newly learned just keeps being forgotten.

Less able to make decisions or plans

You need to be able to hold a lot of thoughts in your mind at once to sort out and decide which decision to make, and we can't do this very easily because there is less storage space for ideas.

Slower to grasp complex ideas

Like making decisions, we run out of storage capacity to take a complex idea in and to understand it properly.

Ready to blame others for 'stealing' misplaced items

Our memory of recent events is so defective that we honestly think we have put something somewhere, and have absolutely no recollection of what we may actually have done with it, so of course we think you have taken, borrowed or misplaced that thing.

More self-centered, less concerned with others and their feelings

It takes so much energy to make our brain work, and just keeping ourselves going feels like an achievement, and listening to you to find out your needs is stressful as we so often miss what you are telling us and we are worried about making an inappropriate response.

More forgetful of details of recent events

We may simply have failed to register what is happening, as to do just this takes lots of effort on our part, or we have run out of storage space to keep this memory for later recall.

More likely to repeat themselves, or forget their line of thought

We may well forget what we have just said, and often I ask first 'Have I told you this already?', but sometimes I just sound like a cracked record! It takes a huge amount of effort to keep track of what we are saying, and any small interruption usually means 'we lose it'.

More irritable or upset if they fail at something

We know something is wrong with us, although we desperately want to be normal again, and there is so little capacity when we have made an effort to do something, that if we fail, it is so much harder to have the strength left over to 'laugh it off'.

Seeking the familiar, shunning the unfamiliar

Anything new takes lots of effort, and our minds become very quickly drained, and we are also very anxious not to get lost or to be a failure in something new we might be asked to attempt

Stage 2 - Moderate (may last 2-10 years)

We need even more patience as well as subtle help, but please don't take over. I'm often in this stage when I'm tired or I've forgotten to take my tacrine.

Need assistance and supervision with tasks

We get confused very easily, and often just can't remember something we used to know quite well.

Be very forgetful of recent events

Memory for distant past generally seems better but some details may be forgotten or confused. It is hard to be able to register and store new memories, but somehow our old memories are still very much there, and all sorts of things going on around us can trigger recollection of these past events in our lives, and it is so much easier to talk of these than it is to talk of the present, when we have such difficulty in taking everything in as it happens.

Be confused regarding time and place, and time of day...may go out shopping at night

I look at my diary several times a day to keep reminding myself what day of the week it is, what month and what year. Although I used to be able to have a sort of background to my thoughts, easily accessible, which knew all this automatically, now there is no space somehow for this daily record, and it takes more effort to keep these things in mind.

Rapidly become lost if in unfamiliar surroundings

I panic if I am somewhere unfamiliar to me, and so there is even less chance I can cope, because I have to remember a whole series of things to be able to orient myself, such as which way did I come, and somehow everything looks so very different looking back than going forward.

Forget names of friends or family, or confuse one family member with another

I always know who you are, but the name that belongs to you isn't there automatically unless I search for it, and there is no time to do this sometimes, and the label you have has become unattached somehow and I get the names mixed up. But for me it is no longer important that you have a name, only that i know who you are.

Forget saucepans, kettles...may leave stove on

Yes, we just can't keep all this new information in our sieve-like brains, so I try now to do only one thing at a time and not to become distracted, because the fact I am cooking dinner under the grill will not automatically remain on my mind if I am also boiling something on the stove, or talking to someone.

Wander around streets, perhaps at night; sometimes becoming completely lost

This hasn't happened to me yet, but I can understand how this can happen, because if I can suddenly forget how to drive in the space of half an hour, then surely one day I might forget where I am going, where I am or where my home is.

Behave inappropriately, such as going outdoors in sleep wear

I am dreading this, and yes, I can see how it might happen as I sometimes simply forget where I am, who I am with, and what we are meant to be doing.

See or hear things that are not there

Yes, I did this when I thought the watering system was spurting all over the garden and needed fixing, whereas it was only raining. I find it very hard to recognise noises, and it now takes a conscious effort when I hear something to work out what it is.

Become very repetitive

Of course we will, when we have forgotten what we just said to you!

Feel safer at home and avoid visiting places

It is not so much feeling safer but avoiding the extra stress of new environments, of lots of sights and sounds around us, and of having to make conversation and answer all those questions, because we just get exhausted -- not physically but mentally.

Be neglectful of hygiene or eating (perhaps saying they had a bath or a meal when they have not)

We need things to trigger our actions, for we forget the normal run of things, and somehow hunger doesn't register the same to me any more, so I need to make an effort to remember lunch when I am on my own. I'll tell you I had lunch, for I am too ashamed to admit I forgot. If I forgot to shower I think I'd know from the smell -- but maybe that too will happen, although I hope not!

Become angry, upset or distressed very rapidly

I find I have less mental energy to cope with criticism, or others being angry at me, and because I have so little mental resource, I am more emotional than I used to be.

Stage 3 - Severe (can last for 3 or more years)

We need total care until we die. Thankfully I'm not here yet, and I'm not sure how I'll communicate with you from an 'insider's perspective', but I'll try!

Be unable to remember for even a few minutes that they have, for example, just had a meal
Lose ability to understand or use speech
Be incontinent of urine and/or feces
Show no recognition of friends or relatives
Need help with feeding, washing, using the toilet, dressing
Take clothes off inappropriately
Fail to recognise everyday objects
Be disturbed at night
Be restless, perhaps looking for a long-dead relative
Be aggressive, especially when feeling threatened or closed in
Have difficulty walking, eventually perhaps becoming confined to a wheelchair
Have uncontrolled movements
Eventually become permanently immobile, and confined to bed in final weeks or months, until unconscious, and then die

Reprinted by permission from Christine Boden-Bryden
Christine is a board member of DASN and still lives in Australia.
From Who will I be when I die? by Christine Boden
Available from HarperCollins Publishers
http://www.harpercollins.com.au/info/online_retailers.cfm

In Passing: Those We Must Remember

From PHOTOLJT
dated 8/8/01

It is with much sadness and a heavy heart that I write to you this evening. I received word from Kathy, or No1babymunch as we know her in The Gathering Place. Kathy wrote me to say that her Aunt Betty, who she had been taking care of, passed away on July 30. Aunt Betty had been hit by a car and just really didn't have a chance to recover.

In the email I received from Kathy, it was a hard decision to remove Aunt Betty from life support, however, after consulting with a priest, and realizing it was her aunt's wish, she realized it was the right thing to do. She found much comfort in putting together picture boards of her aunt's life for the memorial service. She says that she is doing pretty well. Kathy wanted me to relay to you: "I will probably not be at the site anymore. But please express my gratitide to everyone there. I got such comfort and so much help my times with all of you. I wish the best for everyone there who continues to faithfully abide by their loved ones who remain with their afflictions. I will put you all on my permanent prayer list..."

Please join with me in extending your sympathies and thoughts out to Kathy and her family in this very trying time.

8/8/01

ALZHEIMER'S ASSOCIATION MOURNS THE LOSS OF MAUREEN REAGAN
Was National Board Member and Leading Advocate in Fight Against Alzheimer's

Chicago - The Alzheimer's Association mourns the passing of Maureen Reagan, who was a member of the association's national board of directors and one of the association's leading advocates in the fight against Alzheimer's disease.

"We offer our heartfelt sympathies and condolences to Maureen's husband, Dennis, and their daughter, Rita, and to the entire Reagan family," said Alan J. Stone, president and CEO of the Alzheimer's Association.

"The Alzheimer cause has had no better champion than Maureen Reagan," said Stone. "Millions of Americans have been helped by her dedication and compassion and by her tireless efforts to raise public awareness about Alzheimer's, support caregivers, and substantially increase our nation's commitment to Alzheimer research."

Orien Reid, chair of the Alzheimer's Association's national board of directors, says Ms. Reagan was one of the board's most dedicated members.

"Maureen has been one of the Alzheimer's Association's most effective and passionate spokespeople in our efforts to create a world without Alzheimer's," said Reid. "She seemed to be driven by her love and devotion to her father."

"Maureen was so selfless and supportive in her efforts to all attention to the fight against Alzheimer's. She was a beacon of light for millions of families struggling with Alzheimer's disease."

Reid noted that Ms. Reagan was so devoted to the cause of eliminating Alzheimer's disease that despite her declining health, she didn't let up in her battle against Alzheimer's. She even had been planning to attend one of the association's major fundraisers, the Rita Hayworth Gala in Chicago, last May but had to cancel at the last minute on the advice of her physician.

To honor Ms. Reagan's commitment to fighting Alzheimer's disease, the Alzheimer's Association has established the Maureen Reagan Tribute Fund. Donations to the Maureen Reagan Tribute Fund can be sent to the Alzheimer's Association at 919 N. Michigan Ave., Suite 1100, Chicago, Illinois 60611-1676, or can be made on-line via the Association's Web site, http://www.alz.org, or by telephone at (800) 272-3900.

Ms. Reagan was elected to the Alzheimer's Association's national board of directors in 1998 and was a member of the board's public policy and marketing and communications committees.

Ms. Reagan testified several times before Congress to advocate for increased funding for Alzheimer research and caregiver support. In testimony to the U.S. Senate Appropriations Committee's Labor, Health, Human Services and Education subcommittee in March of 2000, Ms. Reagan told senators, "We need your courage and steadfastness, not only this year, but in years to come to help bring this disease to its knees. We must be the last generation of American families to live without hope."

Most recently, she had been calling on the Congress to double Alzheimer research funding at the National Institutes of Health to $1 billion a year as soon as possible to find a prevention or cure so that the Baby Boomer generation will not be lost to Alzheimer's disease.

Ms. Reagan was national honorary chair of the Alzheimer's Associaton's annual Memory Walk from 1997 to 2000, helping the association raise more than $60 million to support Alzheimer families. She also traveled extensively to scores of cities and towns across the country over the past several years to help local association chapters with Memory Walks, fundraising, advocacy, public education, caregiver support activities and media events.

In recognition of her outstanding commitment and service, the Alzheimer's Association presented Ms. Reagan with its Distinguished Service Award last October.

Condolences and best wishes can be sent to Dennis Revell, c/o Alzheimer's Association, 919 N. Michigan Avenue, Suite 1100, Chicago, Illinois, 60611-1676 or e-mailed through the Association's Web site at www.alz.org/media/news/mreagan.htm.

The Alzheimer's Association is the premier source of information and support for the four million Americans with Alzheimer's disease. Through its national network of chapters, it offers a broad range of programs and services for people with the disease, their families and caregivers and represents their interests on Alzheimer-related issues before federal, state and local government and with health and long-term providers. The largest private funder of Alzheimer research, the association has committed nearly $120 million toward research into the causes, treatment, prevention and cure of Alzheimer's. For more information, call (800) 272-3900 or visit the Web site, www.alz.org.

Helpful Links

From thornygates@hotmail.com

don't think i have ever sent anything for The Ribbon before. but was searching for adult daycare, assisted living, nursing homes, for jo. looking for anything and everything i guess. i came across this website that can search for all kinds of things like that for any area. i found it very helpful. so thought i would pass it along. it is: http://www.cmrg.com/

also would like to take this time to say THANKS to you and Karen forall the work you put into The Ribbon and for all who i have gained support through reading it.

hugs,
teen aka gates85 now thornygates@hotmail.com

From Andy@30135.com

Didn't know if you had seen this.

** New Hope for Alzheimer's? **
In the battle against Alzheimer's disease, a new weapon--a vaccine--is currently in clinical trials. A Web-exclusive interview by Laura Fording

http://www.msnbc.com/modules/exports/ct_email.asp?/news/610692.asp

Email Bag

From Cwadephill

Thank you Mary Emma for validating my feelings regarding being 'carepartners'. I want to add that I really enjoyed visiting your website, and hope other readers of The Ribbon will take time to do so also. - Mina

Jan / Mina
Nothing the heart gives away is gone (~)
it is kept in the heart of others. . . . . . ,,,\)/,,,
The Heart Remembers
Jan/Mina's Home page *** DASN Homepage ***

Dementia Advocacy and Support Network

From Bubbierg

Dear Ribbon friends,

My husband, now nearly 75, is in severe stage of AD, having been diagnosed at 69. I have been able to keep my husband comfortably at home.

He goes to a day care several times a week and also I have a very good and strong professional caregiver residing with us. Although this does require considerable funds, it is much cheaper than a quality nursing home would be, and I have the pleasure of actively participating in my husband's care. I know this is not practical for every situation, but I think some caregivers may benefit from our little history--especially at the early period of when the unknown is so frightening.

My message is: "Don't telescope the future. The beginning is not the end. Don't look for solutions long before a problem arises. Be confident that when the time comes, you will figure out an answer then-- not now. Try to squeeze the best out of the time you have together. Celebrate what can still be enjoyed and don't dwell on the losses that gradually come."

Our dementia clinic offered an eight session training program for caregivers, and I did all my weeping there the first two sessions but then learned lots of techniques and attitudes that have helped me enormously in the years that followed. Although my two children live in distant states, I think they too benefited from the knowledge I gained from the "support group".

During the first few years, Ed was strong and somewhat competent. We continued to winter in Florida and even go on vacations, with relatively few mishaps. Although I was proud of all I could do personally to help Ed, eventually, it became necessary to seek support in the community. I found a day care center that knew how to help Ed adjust (although the first one I tried sent him home the second day.) I hired a cleaning lady several days a week who was kind to both of us, and could "sit" or drive Ed on small outings.

I did not wait for friends to call me; I called them to arrange dinner or theater dates. They were so happy to help but had not known how. I gave small dinner parties which Ed happily enjoyed even though I had to feed him.

When he became too heavy for me to lift, I found an agency that provided live-in caregivers--something I had dreaded. But the young man who came to live with us, replacing the cleaning lady, has been a blessing to us both. He helps with everything, and having another adult in the house is good company.

Six years after diagnosis, Ed is almost completely helpless. The doctors have long ago abandoned aricept but we still find that his anti-depressant helps his appetite. We found many products that help us lead a pleasant life. Diapers, bed pads, a chair and hand-held shower head for the shower, and a collapsible wheelchair with low wheels that lets us go many pleasant places. When we need more mechanical help, I know we will find the appropriate devices.

Ed can only say a few words but we can tell what he enjoys and it thrills us. We wheel him to movies and restaurants. Last week we lifted him and his wheelchair onto a fishing boat and had a wonderful day. We caught 5 huge fish!

You will really be surprised at what I attempted next. Since we were no longer able to travel, I decided to attempt a lifelong dream. At age 70 I entered law school and will graduate next May. Of course I wasn't sure I could do it, but I wasn't afraid to try. It did cut down on social activities, but is such an interesting challenge that I don't mind. Of course, it is not for everybody, but learning something NEW is a great tonic that caregivers really need.

Yes, my heart breaks again and again as I see Ed's powers slipping away, but it also rejoices that he and I can both enjoy a blue sky, a good dinner, our grandchildren's visits and a good night kiss.

I recognize that our situation seems to be easier than many, and my heart goes out to the desperate lives of most sufferers. But I am glad that I did not let despair and fear spoil the opportunities that did still exist. This part of our life is special in its own way.

Good luck and joy to you all!
Rosalie in Milwaukee

We hope you are getting support, whether it's from family, friends, support group, or from us here at The Ribbon. If you need an online support group, we recommend The Gathering Place. Here you will find someone to talk to Monday thru Friday, 9pm-11pm EST. http://www.theribbon.com/gatherplace

Until next time, we wish for you

Hugs and Peace,
Karen and Jamie