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The Ribbon - Care for Caregivers
Volume 5, Issue 23
November 11, 2001

www.TheRibbon.com

1104A Murfreesboro Pike
PMB 114
Nashville, TN 37217-1918

This is a weekend of celebration at my house. It is Veteran's Day weekend which means so much more to so many this year, a reason in it's self to remember what was in the past and what is in the present and what will happen in the future. This is one of those holidays that tend to go by the wayside unless someone close to you happens to be a Veteran.

The other reasons for celebration is that it is my oldest son's, Stephen, 21st birthday and Nanny's 89th birthday. We had quite a few smiles yesterday when Nanny would realize, again, that it was her birthday. She could remember she was born in 1912 but couldn't remember how old she was. It was so nice to see her brighten up with glee each time we told her how old she was. She is really looking forward to her 90th next year.


Changes at The Site

Our webmaster, Kevin, has been busy with the website since the Gathering of Friends in October.

One of the things that has "bugged" us at The Ribbon is that with all of the server difficulties over the last year we did not have the beautiful dedications that have been made over the years. Any dedications made prior to May 2001 could not be viewed. Kevin has fixed that and now we have a "Garden Archive." Click on "Dedication Garden"... then click on "Garden Archive"... and you are there.

Also new to the site are some fabulous pictures of the Gathering of Friends, held in Nashville recently. From the main page, scroll about half way down the page, on the left side, click on "Gathering of Friends." The first thing you will see is a countdown to GOF, 2003. (Yes, we will be doing this again. Plan on it!) Click on "GOF 2001 Photo Gallery" and you'll see some great pictures from Nashville, '01. We hope you all enjoy them. Check back frequently as some of us are still getting our pictures to Kevin...more to come.

We would also like to remind our readers that the The Ribbon is a newsletter and we rely heavily on all of you to contribute letters, articles and thoughts. This newsletter is for you and about you. Take some time to share what you are experiencing as a caregiver. We all find strength in that sharing. You may forward any writings to Karen@theribbon.com.

As always, we thank you for your support.

--The Ribbon Staff


I asked the DASN International members to give me their viewpoints on what to say or not to say to someone who has been diagnosed with a dementia. Here are their responses.

From mari5113@home.com

I believe this is how most of us feel.

This article was written by Christine Bryden in Australia, and I got her permission to post it here. Thanks Christine.

What can you do to help us live well? You can inform and empower us. Provide help sheets for us. We need to understand the nature of this disease, and how it is as individual as we are, and that there are many things we can do to help ourselves.

We need to know about anti-dementia drugs such as Aricept, about keeping mentally and physically active, and about complementary medicines such as Vitamins E and C, lecithin and Ginko that have been shown to help address brain damage.

Make sure we know about an enduring Power of Attorney as soon as possible after our diagnosis, so that we can exercise our own choices about our future. It may well reassure us about our financial affairs. However, it will of course distress us to realise that one day we may lose our ability to read, write and use numbers. For some of us this occurs very early on in the disease, yet for others it may be a lot later.

Present information simply and clearly, with not too many choices, and encourage us to function as a normal human being. Help us make choices in small areas of our lives so that we feel in control, and not pushed into things. You can provide us with support and encouragement.

Encourage us to join a support group to reestablish social skills in an environment in which we feel normal, in which we no longer need to hide the fact that we have dementia. If there isn't one, help set it up! Provide specialised counselling services for us, so we can deal with our emotions, and develop coping strategies.

We need all the support we can get after having what I think is one of the worst diagnoses anyone can get.

If we live alone make sure we have access to transport and home help. But don't provide a large bus labelled "Alzheimer's", for all our neighbours will then know what we are trying desperately to hide from them.

Help us to develop our life story, with photos, business cards, favourite foods etc, so that we recapture memories and have a resource alongside us as the disease progresses.

Make sure we don't give up. Give us time and space to try to keep doing as much as we can. "Use it or lose it" is painfully true in the case of dementia. Is there a way you can help us carry on doing at least some ordinary chores? What about signs around the place, colour coding light and other switches, lists each day of steps to take for each task?

Maybe get us a diary, and help us parcel out activities for each day, and remind us about the day's activities to get a sense of the day and date, and to register what we did yesterday or last week. Even of we can no longer read, you can talk us through our daily activities.

Perhaps think up some sort of "brain gym"-reading children's books, magazines, particularly in the early stages to keep us able to cling on to these abilities. Watching quiz shows. Newspapers, board games, crosswords.

Maybe the golf club can arrange a buddy to play a round of golf with us and keep our score and find our ball!

You can value us. How you relate to us has a big impact on the course of the disease. You can restore our personhood, and give us a sense of being needed and valued. Give us reassurance, hugs, support, a meaning in life. Value us for what we can still do and be, and make sure we retain social networks.

It's hard for us to be who we once were, so let us be who we are now-and realise the effort we are making to function. If you could see the damage- like you could if we had an arm or leg missing- you would be very proud of us and the way we are managing despite missing bits in our brain.

Include us in the activities of community health organisations, particularly those addressing dementia. Are we on your committees, boards, seminar organising groups and suchlike? Unlike people with other diseases, we seem to be written off from active participation in addressing our own needs.

Don't call us "dementing"- we are still people separate from our disease, we just have a disease of the brain. If I had cancer you would not refer to me as 'cancerous', would you?

You can communicate with us better. Just because we can't express ourselves very well does not mean we have nothing to say. Try to find the meaning behind the words as we will make mistakes in tenses, words and grammar. Be sure we would like you to help fill in the gaps in our struggle to find words and sentences before you do so.

Try to avoid direct questions, which make us feel pressured for the immediacy we have lost. If we have forgotten something special that happened recently, don't assume we didn't enjoy it. Surely the memory of the event is not what is important- it is our experience at the time that really matters.

Speak clearly and not too fast, for we will have gaps in reception and understanding-and the faster you talk the more we will miss. Don't shout at us though- the problem is usually not our hearing.

Most importantly, don't push us into something, because we can't think or speak fast enough to let you know whether we agree.

Try to give us time to respond-to let you know whether we really want to do it. Being forced into things makes us upset or aggressive, even fearful.

You can modify our environment-Our environment is a critical part of our disease- how we exhibit symptoms will very much depend on how well we can cope as the world around us becomes strange and our ability scrambled.

Our behaviour is usually a perfectly reasonable response to our environment given the degree of brain damage we have. Paranoia and psychosis may well be perfectly logical responses to what is happening around us given our poor memory, confusion and fear of losing control. Make our spaces uncluttered, particularly in areas like the kitchen and bathroom.

We may have difficulty in vision and coordination which mean we might knock things over and feel clumsy. Avoid background noise, as this helps avoid additional confusion. If TV is on, mute it first before talking to us. We won't realise we need you to do this, though, and may even complain. But one source of sound is usually enough! ยท If children are underfoot, remember we will get tired very easily and find it very hard to concentrate on talking or listening as well. Maybe one child at a time and without background noise would be best. Maybe think about ear plugs for a visit to shopping centres, or other noisy places.

Get the entry / exit doors to toilets in public places, such as community centres, painted a contrasting colour so we can go to the 'loo! There can be so many doors in there to confuse, and our carer may not be able to go in there to help us!


Visit my web page:
http://www.angelfire.com/ok4/mari5113/index.html

Join me for Alzheimer's/Dementia Chat
http://groups.yahoo.com/group/DASN/chat


From jleehawaii@aol.com

jamie in early onset saying "no there is nothing wrong with you i forget too." the other is in older patients i have found the agreeing with whatever they say. it is easy to sway them away from the very same idea and they are happy cuz they got their way. aloha jeanne


From mulliken@fidnet.com

Jamie, with respect to a pamphlet about what to say to an Alzheimer's patient, I would say first, LISTEN if they are able to speak about their feelings. Many of us feel as if nobody can possibly understand our experience and are driven to explain it to anyone who will listen -- including you! Of course, I am only in early stage, and highly verbal at that, so maybe others will have different advice.

It goes without saying that we, in turn, are highly grateful to you for your willingness to be here....

Carole Mulliken


From jleehawaii@aol.com

I have one thing else to add to the suggestions to help carepartners and in turn help us. It is so hard to hear friends and family, say over and over that they do the same thing. They mean well and are trying to help. but do not know the extreme problems we endure. It is almost demeaming to hear they think they are going through the same things that happen to us 10 times a day and they have done it before. BETTER TO SAY YOU DO WELL WITH OTHER THINGS..


Editor's note: I am finding in being involved with DASN that we must start making a difference between those who have been diagnosed with an Early Onset type of dementia and those who are in the later stages.

I consider myself "care partner" to my husband who is just going through the testing to get a diagnosis of his dementia. I consider myself "caregiver" to my grandmother who is much further along. This is because I can still have my husband's participation with his care but my grandmother depends on me to do almost everything for her.

It seems that most of the caregiving tips, advice, etc., is geared toward the later stages. I am depending on those with Early Onset to keep us advised as to ways to help them without demeaning them which is not our intention.

I want the world to know that those who have been diagnosed early in their lives are still and will continue to be quite productive people for a long time. A diagnosis of Dementia, no matter the type, is NOT the time for someone to give up and let go. It's time to FIGHT as my friends at DASN International are doing.

Take a moment to visit the website at www.DASNInternational.org

In future issues I will be featuring the member's homepages. I think by reading some of the journals you will get a much better insight as to what they are feeling and dealing with.


In Passing: Those We Must Remember

From OldRmebrat

Hello All,

This is ajust to let you know that Bob's struggles are finally over. He went to visit with God this afternoon around 1:20. He will be sorely missed by those of us he has left behind, but he kept his sense of humor to the end.Bob seemed not to be suffering; he never complained of pain....... his main concern was for his 'poor Pat' that he was leaving behind. Finally, he agreed to 'save a place for her' once he got to Heaven.

If you find time, could you please say a prayer or twenty for Pat and her family as they deal with the loss of Bob? We all really appreciate it.

Mary


All of our Veterans who gave their lives in order that we have a Free Nation.


Before The Diagnosis
Janice Norman

My husband is now in the middle stages of frontal lobe dementia getting more helpless all the time, but although this part is very sad, a widow with a husband, the sole repository of over 30 years of memories two have shared, I think the worst part was just before and after his diagnosis. His personality changes took the form of what I perceived as stubbornness and hatred towards me. For those who remember "Gaslight" Charles Boyer's cruel plan to drive poor Ingrid slowly out of her mind, fits.

Truth to say, I had always had him wrapped around my pinkie, sometimes calling him "the sweetest man who ever lived." He was a real Prince Charming, my single friends often asked if he had a brother.

His home was California, he loved the beauty, ocean, delicious fruit and often planned to go back to Santa Barbara, where he was born. I'd been born in New York City, but we both became fish out of water as he worked for an independent telephone company whose properties lay in tiny southern towns. After twenty years of trying to fit in to the latest place he'd been transferred he remised that when he retired we'd move wherever I wanted. Of course, we took field trips and decided on Asheville, North Carolina, not too big but plenty of natural beauty and culture.

As his brain was affected he began to hate everything about our new home. Too crowded, busy, high taxes, crazy drivers, too many leaves in the fall. After many a painful interchange, I agreed with his idea of moving way out near the Nantahala forest, 3,000 feet up a dirt road, to a cabin-like house, with no insulation, insufficient heat, out in middle of nowhere. Actually it was a great summer house but we couldn't afford a winter house somewhere more comfortable. I liked the buck stove, but not hauling the wood. One winter we were freezing without electricity for a week after a blizzard. The fact that he gong to be a Daniel Boone been in an office all his life began to show. The fireplace leaked, the pipes burst. I say all this because I was still hoping I could reason with him. He was forgetting how to do things, as his language dropped away he became furious finally I made him go to a neurologist who diagnosed dementia. But I think for several years we were both in a living hell, trying to connect through the short-circuits in his brain. . There was no one around for a reality check and since he had always been such an understanding, sensible person, I assumed it was I who needed adjusting. It really is quite frightening to see your hero's nature change;

Well, to sum up one bizarre thing after the other occurred until the day before my book club was to drive down from Asheville, and I returned from getting some groceries downtown 14 miles away to find he had mounted a deer's head on the living room wall. I met an old boy downtown and he sold it to me for $50 dollars.

Robert, you never killed anything bigger than a mouse in your life. I thought we were vegetarians. I said terrible things and so did her. good we didn't have any neighbors.

Finally I decided to let go.

As soon as he leaves, "I'll take the damn thing down," I thought. I went to the barn and got his 12-foot aluminum ladder, I placed it under the deer's head, spread it and started climbing. We had twelve-foot ceilings.

I climbed up, the thing looked so pitiful up close, mouth sewn together, dull, sad brown eyes, 8 pointy yellow antlers surrounding my arms as I pressed into the big screws and started turning. Ah, one out, put in my mouth, no, dropped on floor, number two a bit tighter, god he was strong. Finally as I backed out the tired the thing slumped on its plaque, went askew and hung there. The pointy antlers surrounded me. If I could keep my balance and just pull but I couldn't. Just then the phone rang. A new friend from town. "you sound out of breath" "I am." She offered to come over and help. By the time she got there I'd fashioned a tale about the previous owner having left it and Bob too busy to take it down. We stuck it in a closet and sat down to chat. As my story unrolled she mentioned that I might have a neurologist look at him. I finally got the nerve to make the appointment. Bob smiled through the mental status exam, failing every question. At least now I don't blame him. And don't try to change him.


Links

AOL News: Brain Scans May Find Alzheimer's
(on AOL only)


Want to Chat?

EC-Online Chat Schedule

November 14 (Wednesday 5:00 to 7:00AM EST) "Ozcarers' Chatroom (or Pong's Place):" Hosts Pongfoot (David) and Splash (Edith) welcome caregivers from around the world to drop in and put their feet up for a while, chat with other caregivers and "Take a Break".

November 14 (Wednesday 1:00 to 2:00PM EST) "Sugarlips' Chatroom:" Host Vicki Gardner welcomes caregivers for a social and networking discussion group on the topic of "Expressing Our Emotions."

November 14 (Wednesday 9:00 to 11:00PM EST) "Bubblehead's Chatroom:" Host Edyth Ann Knox leads a supportive chat group for dementia caregivers on the topic of "Caregiving for People with Dementia."

November 15 (Thursday 9:00 to 11:00PM EST) "Sugarlips' Chatroom:" Host Vicki Gardner welcomes caregivers for a social and networking discussion group on the topic of "Expressing Our Emotions."

November 20 (Tuesday 9:00 to 11:00PM EST) "Parent Caring:" Host Brian Duke leads a discussion group for people caring for aging parents. In partnership with Children of Aging Parents support groups.

November 21 (Wednesday 5:00 to 7:00AM EST) "Ozcarers' Chatroom (or Pong's Place):" Hosts Pongfoot (David) and Splash (Edith) welcome caregivers from around the world to drop in and put their feet up for a while, chat with other caregivers and "Take a Break".

November 21 Thanksgiving Holiday: No chats scheduled.

November 21 Thanksgiving Holiday: No chats scheduled.

November 22 Thanksgiving Holiday: No chats scheduled.

November 28 (Wednesday 5:00 to 7:00AM EST) "Ozcarers' Chatroom (or Pong's Place):" Hosts Pongfoot (David) and Splash (Edith) welcome caregivers from around the world to drop in and put their feet up for a while, chat with other caregivers and "Take a Break".

November 28 (Wednesday 1:00 to 2:00PM EST) "Sugarlips' Chatroom:" Host Vicki Gardner welcomes caregivers for a social and networking discussion group on the topic of "Expressing Our Emotions."

November 28 (Wednesday 9:00 to 11:00PM EST) "Bubblehead's Chatroom:" Host Edyth Ann Knox leads a supportive chat group for dementia caregivers on the topic of "Caregiving for People with Dementia."

November 29 (Thursday 9:00 to 11:00PM EST) "Sugarlips' Chatroom:" Host Vicki Gardner welcomes caregivers for a social and networking discussion group on the topic of "Expressing Our Emotions."

Enter the chatroom from the front page of either website or at http://www.ec-online.net/chat.htm.


The Gathering Place

Hosted Monday thru Friday 9-11pm EST.
www.TheRibbon.com/GatherPlace

Welcome to The Gathering Place


Email Bag

From JRNYWMN

As always, you guys just keep keeping me a part of the group. Thank you! Mom still lives with us at home, and I really can't imagine her being anywhere else....unless they gave me a 100% guarantee that she would be in as good hands as ours...and they can't. It's tough, true. One really good thing is coming out of all this (well, not just one, but this is a "biggie"): Janalee was asked to begin training in physical therapy for Alzheimer's patients. She is so good with the residents, that she was almost begged to cross over from Activities. She LOVES it! And, as with Activities, she is as good in PT, even without that background. She's doing both!

Thanks for filling us in on the GOF. I can't tell you how sorry I was for being so conservative in Mom's care and keeping her home. Janalee earnestly pleaded with me to get the 3 of us to Nashville; I should have listened, of course.

Mom's as spunky as ever, since she came off the Risperdal. What a difference! Not a perfect change, however. She can surely get CRANKY! But she's so alert, so aware. She talks in her sleep a little more, and does the repetitive-word thing quite often; really likes numbers. But we couldn't be happier that she's near; there's a lot to love about that.

Just wanted to say thanks for The Ribbon and for the "connection" to our buddies from as long as 4-5 years ago! Promise one day I'll get back into the chat! Ann


Hugs and Peace,
Karen and Jamie

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