Volume 1, Issue 20 - The Ribbon Newsletter

Issue 20
October 16, 1998

I'm happy to announce that Karen is again back up on her feet. I for one am so happy to hear that good news.

I have a favor to ask of all you readers. A suggestion was made to me for an article that needs your input. I would like for you to send email in to answer this questions:

How did you decide it was time to move your Loved One into a Nursing Home? What did you do to be able to come to that decision?

A lot of us are facing that decision and as you know it's one of the toughest ones we'll ever face. Any input you can provide may help the rest of us have a bit easier time making the decision.

Reminders

The Ribbon Web Site has been up and running for a while now and the reaction to it has been very positive. A lot of folks have visited and signed the Guest Book and we have had some contributions to the Dedication Garden as well.

But we are still amazed at the number of people who ask for back issues of The Ribbon newsletter. Those back issues are available through the web site. There is also a Table of Contents that will allow you to see a lot of the articles listed so that you can choose the topic of your choice and go right to it.

A lot of effort went into the creation of this web site. We wanted everyone to have access to the amazing amount of information that our members have contributed since The Ribbon began.

The web site address is http://www.theribbon.com.

Here is the link: Welcome to The Ribbon

Be sure to put it in your Favorites file so you can refer to it as various changes occur in the care of your loved one. And also remember that The Ribbon is a newsletter, not a newspaper, and everyone's contribution is needed. We have to share so we can endure.

The deadline for responding to the "Gathering of Friends" is drawing near. You have until October 31, 1998. That's only 2 weeks folks. To respond is to show interest, it is not a commitment. It just gives the committee an idea of how many people to possibly expect in order to do some planning. To respond please send an E-mail to LIZA513 and Russell363. They are waiting to hear from you.

Disclaimer: This "Gathering" is being arranged by a group of friends. It is not sponsored by Better Health or AOL, therefore, we ask that you not discuss it in any of the chats as their purpose is to provide support for caregivers, not to do planning. Thanks for your cooperation.

Caregivers Must Take Care of Finances, Too

By Anne Perry, The San Diego Union-Tribune
October 11, 1998

If you are caring for an elderly parent or an ill spouse, you might feel isolated, but you are certainly not alone. As many as 50 million Americans provide full or part-time care to a loved one. Caregiving, in the words of Anne M. Johnson, "is the fastest-growing avocation in America." Johnson is the author, along with Ruth Rejnis, of "The Cost of Caring: Money Skills for Caregivers," (John Wiley & Sons, $14.95) a super new book that provides practical suggestions for keeping caregivers afloat, both emotionally and financially. The founder of Florida Care Giver magazine, Johnson learned that caregivers needed help when her mother-in-law was afflicted several years ago with Alzheimer's. The typical caregiver is a woman over age 45 who is taking care of an ailing spouse or parent. "It's a growing phenomenon," Johnson says. "People are just living longer." While the book is about money management for caregivers, it first tackles the emotional issues that often set the stage for financial decisions. Love and guilt can lead people to do things they might not otherwise. "I have seen young caregivers go into debt, even lose their jobs," Johnson says. In their minds, they think, "It's my mom. I have to do this." Johnson recalls a woman in her 20s who dropped out of college to care for her grandmother, who had Alzheimer's. The granddaughter struggled alone to care for the woman 24 hours a day, remembering how her grandmother had cared for her when she was young. After three years she was almost bankrupt, Johnson says. After seeking help, however, the granddaughter is back in school and rebuilding her life. When someone you love is incapacitated, Johnson says, "your first instinct is to make in emotional decision. And financial decisions often follow emotional ones." That's why Johnson counsels people to think hard about leaving a job or relocating from one city to another to become a caregiver. Even if an elderly parent can afford to have you move in with them, what are you giving up when you walk away from your job? "What's happening to your pension, Social Security and your health insurance?" Johnson asks.

There are some alternatives to simply quitting. For example, consider using the Family and Medical Leave Act, which applies to employers with more than 50 workers. The federal law allows an employee to take up to 12 weeks off without pay in any 12-month period to care for a seriously ill, immediate family member. If you need more than 12 weeks, or if your company is small, consider asking for a six-month or one-year leave of absence. You might be able to retain your health insurance under the federal law known as COBRA.

Johnson and Rejnis offer these financial do's and don'ts for caregivers:

Figure out your net worth, which is computed by subtracting your liabilities or what you owe from your assets, or what you own.
Consult a financial planner, preferably one who charges by fee only.
Itemize the cost of caregiving. Determine how much of it you can afford pay.
Do not shortchange your future by raiding your retirement plans.
Explore possible tax savings, such as declaring your family member a dependent. A tax credit could also be available if you pay to have your relative cared for while you work.

Not everyone is cut out to be a full-time caregiver, either because of work, family or geographic constraints. Sometimes people must instead become caretakers -- those who oversee care rather than provide it directly.

This is especially true for the grown children who live far from elderly parents. That's why a host of Internet sites and non-profit groups now exist to help caretakers.

The following is a partial list of information and support groups:

Eldercare Locator, 800-677-116.
This national hotline will refer you to resources in your community.
American Self-Help Clearinghouse, St. Clare's Riverside Medical Center, 25 Pocono Road, Denville, N.J. 07834. Phone: 973-625-7101.
This organization will provide you with contacts for support groups in your area.
Children of Aging Parents, 1609 Woodbourne Road, Suite 302A, Levittown, Pa. 19057-1511. Phone: 800-227-7294 or 215-945-6900.
This national organization provides information on caregiver issues and referrals to local support groups and care managers.
Family Caregivers Association, 9621 E. Bexhill Drive, Kensington, Md. 20895-3104. Phone: 800-535-3198, or online at www.nfcacares.org
This association, a national not-for-profit membership organization, offers a support network and a quarterly newsletter.
Family Caregivers Alliance, 425 Bush St., Suite 500, San Francisco 94108. Phone: 800-896-3650 or 415-434-3388, or online at www.info@caregiver.org
The non-profit organization assists family caregivers of adults suffering from memory loss.
Caregiver Resource, online at www.caregiver911.com
This online site gives access to caregiving resources, information, books and publications.
Well Spouse Foundation, P.O. Box 801, New York, N.Y. 10023. Phone: 212-644-1241.
This non-profit group offers referrals, information and support to individuals caring for an ill spouse.

Contributed by VWebber491

Expectations

Expectations. We all have them. We expect that our life will go a certain way, that certain people will be there in the way that we know them to be, that everything will be fine. And that is not always the way life goes. Plans go aray, accidents happen, illness occurs. Sometimes when things happen, we later realize that was a good change for us. But in the middle of it all we are bogged down by the every day.

One thing that I notice bogs people down is expecting life will go back to the way it used to be. As a caregiver to a person with a degenerative condition, this is a dangerous expectation. More importantly, it is a form of denial that can be deadly for all concerned. I can tell stories of caregivers not understanding the effects of the illness and letting their family member continue to drive or take their own medication or stay at home alone. As caregivers we cannot live in a cloud of denial. We must accept the situation for what it is.

And yet we are human. We want that person to dress as fast as we can. To walk or move as fast as they used to be able. And, darn it, do they have to ask that one question over and over and over again. We need to keep in mind that they cannot change their actions. However we can. One thing that helps is finding the island of calm inside of yourself. I use this on the days when I have been hit one too many times or I wish deep inside the person with the walker would move faster. But I cannot change this about the other person. I have to accept their walking speed or the hair trigger of anger. Without getting outwardly upset.

So I go to that place. For me it is a beautiful tropical island. And I imagine a world without cares or a need to rush. And it allows me to walk with a person who moves like a snail, without feeling the need to pull their walker ahead and make them move faster. It allows me to move quick enough to avoid a punch or a swat or a grope but still look the person in the eyes and not want to hit back.

One final expectation that we all have is "no matter what I am going to take care of this person until they die at home". That is a wish that many of us want to fulfill. But not all of us have the patience to do so. Sleepless night and constant cleaning wear you down. An adult not remembering simple things is hard to cope with for most of us. Not to mention the change in personality that can occur with some people. If you are not able to do the needed care, then it is time to say "Uncle" and find some one or somewhere that will. In the long run, a good caretaker remembers to take good care of themselves in order to be a good caretaker of the person with the illlness. Whether that is utilizing day care, home health, or nursing home services depends on the person and the caregiver.

Having said all that, I find the need to back pedal a bit. Does that mean we become over-protective of the person with Alzheimer's? The answer is both "Yes" and "No." There are safety issues that must be addressed. Proper locks should be on the door, long periods of time being by oneself will eventually need to be eliminated, good care and needed medication should be administered by the caregiver and not the patient. But never lose sight of the person inside. Remember and share with that person the good times you have had together. Try to find activities that they now can enjoy and do them. When doing an old favorite activity or hobby, do not expect the person to enjoy it the way they used to or to be able to perform it perfectly. But do find a way that they can enjoy that past interest.

Expectations can make it hard for us to see the changes, forgive the slowness and the lack of understanding from that person. If I could give one message to caregivers it would be this. Allow your care needer to do the things they do at their pace. Allow them to walk slowly without rushing, to eat and dress at the speed they are capable. Allow time in your schedule to make this happen. Constant rushing make life frustrating for you and for them because neither of you will ever be fast enough. And when we are rushing are the times that preventable accidents happen. Find that peaceful spot inside of yourself and allow it to help you find the calm you need to be the best caregiver you can be.

Karyn Bowman aka Sewingbabe, lives in the Chicagoland area. She has worked for over ten years with seniors. The past three and a half years has been at a dementia specific adult day care center. She is married with two children. Karyn has also been a member of the support group for 1 1/2 years.

In Passing: Those We Must Remember

Thought you might want to include this in the newsletter. Ann used to attend meetings more frequently but has tapered off in the last six months or so. Walt is her husband.

From Sewingbabe

Just a note --

Walt was buried this AM after his very long battle with Alzheimer's. He stopped walking just a litle over a month ago. It was a beautiful death with our seven children, one in-law, three grandchildren and one neighbor boy there when he died.

All 17 gradchildren participated in the funeral and the Alzheimer's prayer was prayed after Communion. We stayed at the cemetery for the lowering of the casket and then each person put a flower on top of the casket. We did leave before the vault top placed. We are at peace as we know he is. I've tried to get on here the last few days, but just haven't made it.

A niece had made a tape of Walt and it was played throughout visiting hours and people also thought it great. The music was Wish You Were Here and Do something when you can or some such titles. Beautiful. I know I will enjoy them later. Also two note books made - one with pictures made by the younger grandkids and one sort of related to a poem that the niece had written.

Medical News

Study Links Alzheimer's Risk to Father's Age
Reuters

LONDON, (Sept. 16) - The offspring of older men may have an increased chance of developing Alzheimer's disease, New Scientist magazine said on Wednesday. Researchers in Germany suspect that DNA damage that builds up with age can be passed on from older fathers to their children which could raise their chances of developing the progressive degenerative brain disorder. "There is an accumulation of environmental factors which somewhow alter the genome of the father," Lars Bertram, of the Technical University of Munich, told the magazine. He and his colleagues studied 206 people with Alzheimer's disease and discovered that patients who were least likely to have an inherited risk had fathers who were older than those of the higher genetic risk group or healthy people. Fathers of sufferers in the low genetic-probability group had been 35 to 37 years old when their child was born, while fathers in the high genetic risk group were four to six years younger when they became a parent. Alzheimer's disease is the most common form of dementia, affecting about 10 million people worldwide. It causes loss of memory, changes in personality and affects a person's ability to think. Drugs can slow the progression of the disease but there is no cure. The disease is not completely understood but researchers suspect a buildup of plaque in the brains of sufferers causes problems in the brain's communication system.

Reut12:45 09-16-98

Copyright 1998 Reuters Limited. All rights reserved. Republication or redistribution of Reuters content, including by framing or similar means, is expressly prohibited without the prior written consent of Reuters. Reuters shall not be liable for any errors or delays in content, or for any actions taken in reliance thereon. All active hyperlinks have been inserted by AOL.

Tips, Tricks, and Helpful Hints

So many nursing patients in nursing homes either lose or misplace articles of clothing, etc. When my Mom was in a nursing home I bought her lots of nice nighties and slippers, etc., but after a while they were no where to be found so I took my friends advice and started to explore thrift shops and I really was able to buy a lot of nice robes, gowns, hankies, slippers, sweaters for very little cost compared to brand new items. I always laundered the articles even though they were spotless and even gave some to other patients, This can be for male or female patients and it sure keeps costs down.

From NO900

Links

I found the website for the local Alz. Assoc. here in Eastern MA. Do you think anyone would want to browse through it. It includes the past newsletters. Here it is, if you think its worth putting in the Ribbon, feel free to include it. I thought you might want to check it out first.

Alzheimer's Association of Eastern Massachusetts Home Page

Sue, STSWILLIE

E-Mail Box

From AZMcDougal

Thank you for your wonderful newsletter and for caring as you do.. It is just wonderful, and so informative.. God bless you.. You are special.. Dee Ratcliff

From VWebber491

According to this month's Writers Digest (Markets Section) - Two writers are putting together an anthology of short, true anecdotes by loved ones of those afflicted with ALZ. Stories can be between 500-1500 words, sad or humorous, serious or poignant. They are looking for stories to reach the person who is wondering "Why me?" Let the person finish the story with a better understanding that they are not alone. Pays copies for first rights. For guidelines and info write to:

SJ Wertheim
6668 Burning Wood Drive
Boca Raton, FL 33433-3141 Please include SASE

Email is: suzycat1@juno.com - I am not sure if Writers Guidelines can be emailed.

Thanks for all your good work on The Ribbon.
Sincerely,
Vee

From Ineedmusic

I want to thank you for the wonderful "Ribbon." It is the only link I have with others who care for and about our loved ones with Alz. My 85 yr.-old mother has been in a nearby nursing home for a little over a year. The care she gets and the caring staff have allowed me to finally get some sleep at night without worrying about my mom's safety. She is somewhere in the moderate-to-severe stage of Alz. and has good days and bad days. Today when I got home from school, I found eleven messages from her on my answering machine, some made just a few minutes apart--("I've been calling and calling for hours. Where are you???")--and each one a little more frantic than the prior message. When I called her back, she said she didn't make all those calls. I've been raising my severely handicapped son for 17 years now, and believe me, I thought I'd learned a lot about patience, but sometimes it's just not there. It's so hard to hold it all in and to remain calm when you really want to scream! I know we all have our own ways of dealing with stress (mine is walking), but tonight I just have the need to blow off some steam. Thanks for listening.

From wolfsprg@zianet.com

I just wanted you to know how much I enjoyed visiting the chat room Friday, it really lifted my spirits to know there is someone out there to share and unload to.

I had a rough day today, so I'm a little down, which is not like me as a general rule. I got a chance for a few minutes to browse through some of the newsletters on the website you gave me. I could really relate to what some of the people were experiencing and it was the first time I had seen the stages of alzheimers to actually be able to see where my grandmother was in relation to the progress of the disease. My grandmother seems to fit in the 5 and 6 stages, especially the anxiety, depression and personality changes.

The aggression has been what we have been going through most of today. Most of the time she knows my name but not who I am. I've become her jailer and she is my victim. That anyone who comes to my house becomes a prisoner. She thought that this was a free contry. Wants to go places that don't exist except in her mind. I'm a terrible person to whom she would have thought would never do such a thing to her. I'll burn in hell and everyone will know what I've done to her if she ever gets out. She talks of taking her life if she can't do what she wants to. There is more that we go through but I'm sure you get the idea and I'm sure you have heard it all before.

I think I could handle the situation better if there wasn't more that is going on. My parents, her son, will have nothing to do with her and the reason I had to bring her to my home was that they moved away from their hometown. Forever they had lived only a mile from "granny", then last year they up and decide to sell out and move to their "retirement" lake house. Well granny had been exhibiting early symptoms of the disease for several years before and after they left the symptoms accelerated, and with no family close by, I felt I had no other choice, especially when she broke her wrist and a friend of hers took her to the hospital to get it set. The doctors diagnosed her with early adult dimentia and wouldn't release her until a family member came to get her to assure them that she would not be left alone. My parents wouldn't go see about her, (mom was waiting for the man to lay carpet in her new house), so I had to go and get her out of the hospital. I feel like my parents just left her there hoping she would just pass away or something. Since all of this has happened I have had no contact with my parents, I've quit work to stay with granny and have taken on the responsibility of her affairs.

So you see, I not only feel like I'm losing my grandmother who has always done for me, but I feel like I've lost my parents also. It is so hard to rationalize that my whole world has been turned upside down and that what I thought was true has been a myth all my life. I could probably give a shrink a lot to work with. I am 47, I have two grown children (well one is grown-up, the other is still trying to figure out what he wants to do when he grows up. Ha Ha). They both live near by so they help as much as possible, but I took this responsibility on and don't feel like burdening them anymore than I have to. They have problems relating to what is going on with granny and they don't have the patience to deal with her for very long.

I've started a daily journal and hopefully at some point would like to put in a format that maybe the kids will want to read at some later point to remember their great grandmother. I would like to include some of her earlier memories, but she gets things so twisted up, I can't tell which recollections are true, but relating to the family no matter the version may mean something to them in the future.

Well I didn't mean to write a book, I really only wanted to thank you for welcoming me with open arms the other day and I hope to be able to chat with you guys on a regular basis when I can. Also, if there is anything I can do to help anyone else, I am there to do what I can.

Again, I enjoyed the newsletter.

Roberta
wolfsprg@zianet.com

Well, one of these days we'll figure out how to be able to send a few more pages. There's more email to come.

Take care until next time, which happens to be Halloween Eve. Boo

Hugs and Peace,
Karen (KMenges581)
and
Jamie(DRMOM1955)