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The Ribbon - Care for Caregivers
Volume 6, Issue 7
April 7, 2002

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

I have to say I'm so glad to see some springtime weather. We mowed our grass today for the first time. I love to mow but doggone it I'm so very sore tonight.

We've been very busy getting my grandmother's house next door ready for new tenants. On May 11th my mother and her mother will be moving in to it. The one main thing I'd like to say to all of you is PLEASE do not buy your elderly relatives knick knacks when you can think of nothing else to buy for celebrations. I've wrapped so many in bubble wrap it isn't fun any more. (Smiling)

My sister came up over Easter to help in the house and next weekend one of my brothers and my sister-in-law are coming to help us move furniture and paint. I'm so thrilled that my siblings are helping out. These same two sibs along with my brother, who has been main caregiver, will be the ones moving Mom and Grandmother up from Georgia. I can't tell you how much it means to me that everyone is helping in this transition period.
Jamie


Reinventing Rituals ©

I spent most of my adult life living in New York City, and although I grew up in Syracuse, New York, an area surrounded by rich farm land and apple orchards, I lived what could only be described as an urban life. However, I also lived a life in which neighbors cared about neighbors and my extended family of aunts and uncles and cousins, (the numbers of whom accounted for a large portion of Syracuse's population), were a family that responded to each other's needs. I had the good fortune to see all my grandparents die in their own beds. I had the good fortune to see my family gather together to celebrate both life and death, enriching rituals that helped form my attitudes towards the trials I would someday face as an adult.

When I hear people talking about "the good old days when life was simpler," I have to wonder if this generation has any real idea of what the 'good ole' days' were all about. I suspect they have some wistful fantasy of a life of simple pleasures and less strife without any concept of the work it took to survive in a world with fewer options and more restrictions and obligations. Living in the 30's and 40's and 50's wasn't easy for anyone. Living in that time took a lot of emotional strength and physical fortitude and then there was the depression to contend with.

Even though I missed the depression by being born in 1940, the effects of it were imbedded in my cellular makeup, because everyone older than I hadn't missed it. The reality is that what was better in the 'good ole' days' had more to do with the bond we all felt toward family members than anything else. Good, bad, or ugly, family was family and community meant something besides a geographic designation.

We have grown away from that bond since then. Our fear of death has played a large part in that separation. Death has become sterilized and we have been carefully taught to avoid dealing with that negative fearsome aspect of the life cycle to the point of paranoia. We have also been carefully taught that once someone looses their thinking ability we not only have the right to place them in the care of others, we almost have an obligation to do so, and I am still hard pressed to find any official document that describes Alzheimer's that doesn't refer to the inevitable institutionalization of our people, even though the lion's share of care is still done in the home, usually by one other person, and countless families maintain their people until they die. Our people earn the distinction of becoming the walking dead as soon as the diagnosis is laid upon them. Add to that the inherent avoidance of all things dealing with death and we a have group ripe for exclusion from society.

We caregivers aren't only encouraged to cut them loose, we are even handed justification for doing so; we're busy, we havelives, we have other obligations and besides they don't even know who we are. Their care is referred to as a burden, our caregiving described as codependent behavior, and every one wants us to get on with our lives. Our people's feelings don't matter, because, they don't even know who we are.

In 1995, some months before Tom died, I heard John Compton, a native gentleman from the Lakota Nation, speak at the White House Conference on Aging. What he had to say put words to the feelings I was having about my care experience with my husband. I had been a reluctant caregiver, as reluctant as any of us facing this disease. I had wrestled with my demons, but by the time The White House Conference happened, I had spent almost 10 years dealing with this disease and had come to a different place. I had long since stopped seeing my care of Tom as burdensome. This is not to say the care was easy, it wasn't by a long shot, but I found it was doable and I found a deep sense of myself and my own growth as a result of being able to do it.

And Tom mattered, his comfort mattered, and most of all his desire to be in his own home mattered, to me. While every other speaker at the conference spoke of the burden associated with elder care in general, John did not. He was the only speaker at any of the meetings I attended, to address the human needs of our elders, frail, and dependent, and the human quality and positive nature of giving them care. And he put it into words that left the listening audience so quiet you could hear a pin drop.

He spoke of the need for all of us to rediscover our tribal connections. He pointed out that if all of us go far enough back, to the ancients, all of us come from tribal peoples. And as tribal people we learned that the rituals of life were important. Ritual gave us parameters of behavior, security in our relationships with each other, and confidence in the path we all travel as human beings. He said that we still have the capacity to see the tasks we are asked to perform in life as rituals, and he offered the story of a young man he knew in his tribe as an example of what he was trying to impart.

"This young man found himself working near one of the elder's in his community. On an impulse, he stopped at her home to say hello and to see how she was. It was truly an impulsive act because he hadn't had contact with her in years. This elder whom he called 'grandmother', as did many in his community, was surprised to see him poke his head in the door. And in response to his question about her health and needs, she answered that she was all right, she didn't need anything, but would he like to share a cup of tea. The young man agreed.

The next day, at the same time in the afternoon, he felt the same urge to check in on her, and again she told him she was all right and offered tea. The visits developed into a ritual, and during those visits he noticed things: He noticed how she was, and if food was in the refrigerator, and sometimes he just took care of things, and on occasion she would ask for his help. Before long everyone in his community recognized this relationship and respected it to the point where even his job accepted his afternoon 'visits.' He often had to make up the work he missed."


Those of us listening to this story recognized a parable when we heard one. John wasn't telling us to literally do as this young man did, but he did offer a new way of looking at negative attitudes that have attached themselves to the tasks inherent in the care of our elderly frail. He concluded by saying...

"Now... when you have to give up your Saturdays to help mom buy groceries because she can no longer drive, or take time to stay with Dad, so that Mom can get a break, or move a forgetful parent across country to live with you, perhaps you can learn to see those tasks as a ritual, as a beneficent gift that is given freely and lovingly instead of a task that must be done, and one that takes time out of your already very busy life. That is the nature of becoming tribal. That is the nature of rediscovering rituals. That is the nature of being part of the world that surrounds us all."

I had become very disillusioned with the rhetoric that surrounds this disease and somewhat dismayed at the response I received as Tom's caregiver, feelings that only increased as the years since Tom's death passed. As other caregivers contact me about their stories I realize that rhetoric is nothing but meaningless words. All of us have the capacity to reach deep and discard the junk we've been programmed to believe as truth. I believe that caregiving is a demonstration that tribal affiliation is not only alive it is the natural gut reaction we all have to rise to the occasion on the behalf of others in time of crises.

Getting back in touch with the rituals of life is a positive way to face the journey that Alzheimer's presents. It allows us to step out of despair and into action and acceptance and love and that can only be a good thing.

Beverly Bigtree Murphy, MS, Rehabilitation Counselor, Author, He Used To Be Somebody, www.bigtreemurphy.com


A Little Traveling Music Please...
Mary C. Fridley RN, C

Telling an older loved one that he is no longer able to drive is a daunting task that I equate to having a root canal without novocaine: it's darn painful. But the time may come when your loved one is not safe behind the wheel and steps must be taken to protect him, and others, from harm. What do you do, how do you handle the situation? What if he insists on driving anyway? There are a few tricks of the trade you can try:

Replace the car key with an old one or disable the car by pulling a spark plug or two. But beware if your loved one has worked on cars before. I had a caregiver once tell me that her husband was a master mechanic by trade and anything she did to disable the car he fixed! She finally had to sell the car and use public transportation. Now, you may not want to sell the car but hiding it at a neighbor's may work.

If another person uses the car, consider replacing the battery with one that has an anti-theft system. Sears makes one called the Security Die-Hard battery. It works by remote control to arm and disarm it.

Another approach is to elicit the help of your loved one's physician. Have him write a prescription not to drive and give it to your loved one. Also, many states have forms physicians can fill out and mail to the local Motor Vehicle Administration. It alerts the authorities and your loved one may be called in to take a driver's test. You may also be able to call the Motor Vehicle Administration anonymously and report your loved one as a hazardous driver. They usually respond by sending a letter to appear for a driver's test. If your loved one fails the test he is given an identification card that looks like a license. So, if he subsequently drives and is stopped by the police, they will be aware of the situation. These approaches serve two purposes: one, your loved one is more likely to obey the instruction not to drive and two, you are taken off the hook.

It is sad enough that your loved one's independence is hindered, do not allow him to become isolated, too. In addition, he may also become obsessive about driving. Obsessive behavior is not uncommon with dementia, especially Alzheimer's disease. Solicit the help of friends, neighbors, and family to call on him and take him along when they run errands. Look into programs at senior centers where transportation is provided or hire a companion to escort him in the car. There may be a volunteer group in your area that provides transportation, too. Take your loved one's mind off driving by keeping him busy.

The loss of independence is difficult whenever it occurs for whatever reason, but having it forcefully taken away is devastating. Driving for some people, especially men, is part of their identity. It provides a sense of pride and joy signifying freedom and control. Be prepared for angry outbursts but know that these too will pass as all behaviors eventually do.


Mary is a registered nurse certified in gerontology with more than twenty years in the geriatric health field. She is the owner of Gero-Resources specializing in caregiver, eldercare, and successful aging education. She provides staff and community education as well as motivational speaking engagements. Mary is also an author of two caregiver advice columns and contributes articles to various websites. She will be happy to answer your questions or concerns while maintaining your anonymity. She can be reached at Gero-Resources, P.O. Box 4743, Crofton, MD 21114 or at geroresources@hotmail.com.


Creative Memories Scrapbook for Alzheimer's Association

Hello to all my friends, I am a Creative Memories Consultant and some of you may not know me but a lot of you do. Creative Memories is a Scrapbooking company and we teach how to preserve your pictures in safe acid free albums for ever. They are going to have a fundraising for Alzheimer's Association. Yeah! I am so glad. You all know I lost my MIL last April with Alzheimer's and cancer, my FIL has it too. Sharon, my very dear friend for many years, husband has it and I am so thankful for CM to be doing this to help. I have always loved coming to chat but my CM business keeps me busy. I do come once in a while and I love all of you. My heart and prayers are with you all, dealing with Alzheimer's isn't an easy task. If any of you would be interested in an album please let me know and I will be glad to help you all get one. I think it would be a great book to do an album of your loved one.

You may email me or let Sharon (MeeMawMoe@aol.com) know and I will get back with you all. Just wanted to give you all a chance to purchase one if you are interested.

Big Hugs,
Becky
Unit Leader
BJBudy

A new album introduced is the Triumph Album. This is CM's first fundraising album. The program is to help aid funding and awareness for the Alzheimer's Association. For each album purchased, CM will donate $2 directly to the Alzheimer's Association. The album is a 7 x 7 size It's a pretty purple etched with a heart and frame.

Album has 12 pages (24sides) Inside cover is decorated with the same heart and has an alternate self adhesive bookplate. Comes with a gift box. VERY CUTE. $23

7 x 7 page refills and protectors will be available
This album will only be available from April 1-May 31.


Recipe Corner

Many thanks to all of you who are still sending me your wonderful recipes. We want you to know how much we appreciate the time and effort it takes to submit your recipes.

If it would make it easier just to make a copy of a recipe and send it to me in the mail, here is my home address:

Micki Slattery
1855 Orchid Street
Sarasota, Florida 34239

I am looking forward to hearing for ALL of you, and we do enjoy seeing and trying the all the recipes. It has been great having new menus and my family thanks you also.

All of The Ribbon Staff thank you for helping and caring.
Micki Slattery, Food Editor (micki@theribbon.com)


Links

WebMD - Device Drains Clogged Alzheimer's Brains
http://my.webmd.com/content/article/1626.50902

Here's the theory. As people age, the spinal fluid that washes the brain flows less freely. If a person has Alzheimer's disease, the flow is twice as slow. The fluid gets stagnant and fills with toxic materials -- including the tangled fibers that clump into the plaque that clogs the brain of Alzheimer's patients. Increasing the flow is supposed to wash this goop away.


WebMD - Blood Test for Alzheimer's
http://my.webmd.com/content/article/1626.50888

March 21, 2002 -- The only way to accurately diagnose Alzheimer's is to examine the patient's brain after death, but researchers have come up with a blood test to identify Alzheimer-type changes in living mice.


Health & Science: Misshapen proteins linked to Alzheimer's and other diseases
http://www.nandotimes.com/healthscience/story/341071p-2822131c.html

(April 3) - New research suggests illnesses as diverse as Alzheimer's, Creutzfeldt-Jakob disease and adult-onset diabetes are caused by proteins that fold themselves into defective shapes, rather than proteins that have undergone harmful chemical changes.


Gila Monster Spit May Yield Alzheimer's Drug
http://reuters.com/news_article.jhtml?type=sciencenews&StoryID=776658

NEW YORK/LONDON (April 4) - An experimental drug derived from the saliva of the venomous Gila monster is one of a growing crop of new drugs that are being developed to improve memory and learning.


Alzheimer's Patients Get Medicare Break (washingtonpost.com)
http://www.washingtonpost.com/wp-dyn/articles/A44173-2002Mar31.html

Medicare patients can no longer automatically be denied reimbursement for therapy treatments if they suffer from Alzheimer's disease, according to a policy that was quietly put into effect several months ago.


In Passing: Those We Must Remember

It is with deep regret that I must write to share with you that I received an email from SWJW5051 or Sharon, that she lost her mother on March 25, 2002. Sharon states that her mother went very peacefully and that she was with her at home until the end.

Please join with me in extending your thoughts and sympathies to Sharon and her family in this very difficult time.


It is with deep regret that I write to share with you that I received an email from PatMackie stating her mother passed away on March 16th, just 13 days after her 85th birthday. She is needing a break from the sad news for a bit and thanks us for all the help and information having been sent in the last few years.

Please join with me in extending your thoughts and sympathies to Pat and her family in this very difficult time.


It is with deep regret that I write to share with you that I received an email from JDunn56760, Jan, stating her mother passed away on March 27, 2002. Her mother was 93 and very frail. Jan states she is going to start Hospice training.

Please join with me in extending your thoughts and sympathies to Jan and her family in this very difficult time.

Love Always,
Linda

Linda@theribbon.com


Snail Mailbag

Dated 3-19-02

I just wanted to let you know that "The Ribbon" has been a big blessing for me. It has helped me to understand my dad in a whole different light. I just wish that people would take these disorders and learn from them.

Thank you for putting my brother and me both on the mailing list. He feels the same way I do about it. We have talked a lot and he has been helped by it also.

Please keep us on your mailing list. Our prayers are with you.

In Christ love,
Carol
P.S. You all know me as Judy - my 1st name. Please pray for me too.


Email Bag

From Sals62@LVCM.com

I wanted to tell you that I am receiving two copies of the Ribbon each time. My husband passed away in August and I was still working with the support group until the end of the year, but now I am no longer attending the meetings and I am trying to make a new life for myself after 11 years.

The Ribbon was a lot of support and I used it at the meetings, but since I am no longer doing that please take me off the mailing list.

My heart goes out to those that are still having the care of their loved ones with this devastating disease, but there is a life to live after and I am trying to make the best of it.

Love, Sally (Sals62@LVCM.com)


From RdHdSan

Jamie and Karen, you are two special people as well as all the others that help to keep The Ribbon going. So many of us just sit back and reap the benefits of all the work of others. I just want you to know how much I do appreciate all your work and how much I look forward to reading The Ribbon. I know there are hundreds that feel this way too. THANK YOU THANK YOU THANK YOU .......... Copper


From >MeeMawMoe

As some of you know, my husband has early onset Alzheimer's. He is 55 now and was diagnosed in December 1995. I am guessing he is in the latter part of the middle stage. We are going through something now that has become quite stressful.

It wasn't a surprise that he began talking to himself in the mirror. I wasn't exactly sure at first if he was talking just to be talking or was talking to the image. During the last 2 weeks, it has become very clear what is happening. He doesn't recognize himself in the mirror. I think it has been happening for a while, but he has become very violent when he sees himself. He began cussing and hitting the mirrors. He said he wanted to kill that man and tried to describe to me how mean the man is. We can all see how dangerous this could be if he should break the mirror.

The first thing I did was to cover the mirrors, at least most of them, in the house. I felt I needed one or two for myself to put on my make-up, do my hair, whatever. That worked, until he discovered the ones that were not covered. He also began to notice his reflection in the windows and the pictures on the wall that were covered with glass. I closed the shades and tried to adjust the lighting so there would be no reflections.

Now, this all makes me feel like I am closed up in a dark dungeon. I have opened the shades and watch carefully, or try to detour him from that situation.

Now another phase of the problem has started. He now sees himself in the glass of our china cabinet, which I didn't cover, because it wasn't a problem. But there is a new twist. He likes this person. He smiles and laughs and told me that the person put his hand out to his. He believes this person is his Dad.

One of his daycare workers noticed the problem a few days after I did. She said that they don't recognize themselves because they have aged so much. This seems logical to me since he remembers himself before he was sick. This explains why he thinks one of the reflections is his Dad, because of the aging and he resembles his Dad more now. And it makes more sense now that he recognizes himself in pictures when he was younger, than now.

Now trying to figure out who this mean man is that he sees in the mirror. The man always looks mean because he looks mean at himself in the mirror. So he believes there is a mean man in our house that follows him just about everywhere and is sometimes in the same room with me. I tried to convince him that the man was nice by putting my arm around him and trying to explain that I liked him. I started thinking about that and decided that may not be a good idea at all. What if he thinks that man is my boyfriend. I talked briefly with a woman in chat. that told me her husband was accusing her of having a boyfriend. This had become quite a problem and was very distressing to her. It occurred to me, that maybe he was having the same problem with reflections as my husband is having and believes there is someone in the house. I wanted to talk with her some more, but I don't know her email address, so this is one of the reasons I am writing, and just in case there is anyone else dealing with this problem. I would appreciate hearing from you if you have any ideas or solutions. Hopefully this phase will pass soon. If it wasn't so much of a dangerous situation, it could be quite amusing. And by the way, he is never angry at me, only at the man. But I sure can become angry at him, I have tried and tried to explain that it is his reflection, he's not buying it. LOL

Anyway thanks for listening and I hope this helps anyone going through this problem or anyone who may go through it in the future. We could also use some extra prayers, my stress level has about reached its peak. LOL

Love and hugs,
Sharon


Did you remember to set your clocks FORWARD?

Hugs and Peace,
Karen and Jamie

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