Volume 1, Issue 24 - The Ribbon Newsletter

Issue 24
December 11, 1998

In a recent support group meeting there was lots of talk about the Family and Medical Leave Act (FMLA). It seems that not too many people are aware of this Federal Law which provides for unpaid leave from your job for up to 12 weeks per year. You must be aware that the requirements vary from state to state so it would be wise to check with your employer about this.
Our main article is the FMLA act which will give you more information, but first some announcements:

Attention All Better Health Alzheimer's and Better Chat Members

Your Hosts BHost Ridl, BhostSTS, and BHost AC would like to wish everyone a Happy Holiday. The Christmas and New Year's Day Holidays fall on Fridays this year. There will be no scheduled Chats on those days. However, the rooms will be reserved and opened for any members that would care to chat.

The Ribbon Web Site

It has only been a few months since our web site got up and running. Already we have had over 1000 hits! Weather91, our resident computer whiz, has been so faithful about keeping it up to date with the new issues and we want to take a moment to thank him for his efforts.
We also want to remind our readers that this web site is a tremendous source of information. There you can access back issues of The Ribbon, get a copy of the 7 Stages of AD, the Caregivers Bill of Rights and so much more.

There is also a chat room at this site which is unhosted but open 24/7...please feel free to use this room to meet friends.

We did experience some difficulties over the past few weeks with gaining access to the site but all is well now and if you haven't viewed this site, please do so.

Welcome to The Ribbon
The address is: http://www.theribbon.com

Be sure to walk through the Dedication Garden, there are some beautiful thoughts there. Enjoy

Key Provisions of the Family & Medical Leave Act of 1993

The Act applies to employers with 50 or more employees for each working day during each of 20 work weeks in the current or preceding calendar year.
Only those employees who have been employed for a total of at least 12 months and have provided at least 1250 hours of service during the 12 months before leave is requested are eligible for the benefits of the Act.
An employee who works at a work site at which the employer has less than 50 employees is not eligible, if the total number of employees that the employer has within 75 miles of that worksite is less than 50.
The act requires covered employers to grant eligible employees up to 12 weeks of unpaid leave during any 12-month period for the following reasons:
- Birth of a child;
- Adoption of a child or the placement of a foster child;
- To care for a spouse, child, parent with a serious health condition; or
- Where the employee has a serious health condition which renders the employee unable to perform the functions of his or her position.

A "serious health condition" is defined as an illness, injury, impairment or physical or mental condition that involves inpatient care in a medical institution, or continuous treatment by a health care provider.

The employer may require an employee to utilize accrued vacation, personal, family or sick leave for any part of the 12-week leave period.
An employer may refuse to grant leave on an intermittent or reduced leave schedule where requested for birth or placement of a child for adoption or foster care. However, the employer must permit an employee to take intermittent leave or work on a reduced schedule where requested to care for a sick family member or due to the employee's own serious health condition.
An employee must provide the employer with at least 30 days notice of his of his or her intention to take leave when the need for such leave is foreseeable. Otherwise, as much notice as practicable is required.
An employer may require that an employee provide a medical certification of a serious health condition of either the employee or a family member.
An eligible employee who takes leave under the Act must be restored to his or her old job; or, to an equivalent position with equivalent pay, benefits, and other terms and conditions of employment. However, the employer may deny job restoration to certain highly-compensated employees if:
1. necessary to prevent substantial and grievous economic injury to the employer's operations; and
2. the employer notifies the employee of its intent to deny restoration when the employer first determines such economic injury would occur; and
3. The employee has the option of determining whether or not to cut short his or her leave and return to work.
The Act does not pre-empt collective bargaining agreements and company benefit programs which provide more generous family or medical leave rights.
The Act may be enforced by employees bringing civil suit in any state or federal court or by the Department of Labor. Any employer found to have violated the Act will be liable for:
- Wages and benefits lost by reason of the violation, or
- Actual damages where there is no loss of wages such as the cost of hiring a caretaker; and
- Interest on the above

Editor's note: The bold underlined parts are my doing. These things are worth noting.

Medical News

Researchers Find New Indicators For Alzheimer's Disease

PHILADELPHIA, PA -- Dec. 4, 1998 -- In a new study by University of Pennsylvania Medical Center researchers, free-radical activity was found to be roughly doubled in the frontal and temporal lobes of the brains of people who had died of Alzheimer's disease when compared to the same regions of normal brains.

Additionally, the frontal and temporal lobes were the only parts of the brains where the levels of two recently-identified biochemical markers of free-radical tissue damage were seen to be elevated. This is an important observation because these two areas of the brain, critical for memory and intellectual function, are the ones most affected by the disease.

A report on the new findings appears in this month's issue of the FASEB Journal.

"The strength of what we found was that, firstly, these markers were elevated only in the affected parts of the brains of people who died of Alzheimer's disease," said Garret FitzGerald, MD, chairman of the department pharmacology and senior author on the report. "Secondly, the markers were not elevated in the same parts of the brains of people who died of other causes. This suggests that what we're looking at are sensitive, quantitative indicators of disease activity."

The most abundant of the two markers was also found to be significantly elevated in the cerebrospinal fluid, or CSF. The importance of this finding is that the CSF is a relatively accessible body fluid, so that extensions of the current work into living patients presumed to have Alzheimer's disease will be possible. Indeed, such studies have already begun at Penn. Likely to emerge from these investigations will be more accurate methods for disease diagnosis, improved assessments of drugs against the disease and a clearer overall picture of the disease process.

For example, results from epidemiological studies suggest that anti-inflammatory drugs (such as ibuprofen) and antioxidant compounds (such as vitamin E) both offer some protection against Alzheimer's disease. Although inflammation is linked to oxidant stress and its associated tissue damage, it would be useful to know whether and to what degree these processes, independently or in concert, drive the progression of the disease and which class of drugs -- anti-inflammatories or antioxidants -- offers the greatest potential benefit to patients?

"People debate the initiating cause of Alzheimer's disease, but there's general agreement that there is an inflammatory component and inflammation is associated with oxidant stress," FitzGerald said. "So, it becomes relevant whether drug targets associated with inflammation will represent distinct or overlapping targets from those involved in oxidation. In other words, if we give a patient an anti-inflammatory, should we expect any additional benefit from an antioxidant vitamin or drug? Currently, we don't know the answer. Our ongoing studies should begin to address that question."

The innovative measurement technique used in all of these experiments was developed in FitzGerald's laboratory in collaboration with Joshua Rokach, PhD, a chemist at the Florida Institute of Technology and co-author on the current report. It assesses the levels in body fluids or tissues of certain biochemicals called isoprostanes. These isoprostanes are stable by-products of free-radical catalysed damage to lipids, or fatty molecules, found throughout the body, and they serve as quantitative markers for that damage.

Contributed by LIZA513

Now for your answers to the query
"How do you define a Caregiver?"

From Ineedmusic

How do you define the term "caregiver" in less than a thousand words? As a parent "caregiver" for 17 years of a child with severe handicaps and for one year of a mother with Alz. (now in a nursing home), I have to say it is a title which deserves more respect than it gets!

A caregiver gives of oneself to assure that the person in need receives the necessary care to carry on his or her life safely and with dignity.
A caregiver sees to it that the basic needs of food, clothing, cleanliness and shelter are met by the person with need.
A caregiver must also know how to meet that person's emotional needs without becoming co-dependent.
A caregiver never loses sight of his/her own needs and understands that in order to care for a loved one, you must also care for yourself.
I could probably think of a few hundred more definitions, but I'm trying to keep this brief.

Thanks for your wonderful, supportive newsletter.

From Momi1knobi

The term "child care" has been accepted. The only difference in "child care" and "caregiver" is the age of the person to whom the care is given.

A caregiver is a person that an adult needing care is dependant upon for his/her safety. Without that caregiver, the quality of life for the adult needing care would be diminished or endangered.

A caregiver's tasks begin in the morning. First we check to make sure the "adult needing care" is alive. Next any help with bathing, dressing, hair styling, and makeup is given.

Now for breakfast, even if the ANC can prepare his own coffee & toast, the caregiver has to be close in case of spills or fire. Sometimes & most times, the caregiver needs to prepare the food and sometimes feed the ANC. After that, cleaning the dishes & the ANC comes in. One needs to make sure the ANC is brushing his teeth (even tho my mom does NOT floss--no matter what!). When they get their partials stuck, it's fun to try to take someone elses teeth out! You also have to be sure they are properly cleaning themselves after showers, bowel movements.

Next seeing to daily activities so the ANC has a life. Taking them out or involving them in an activity at home to make them feel successful and/or needed/loved.

There's always lunch & supper. Same as breakfast, just different times of day.

Don't forget the manicures & pedicures, the ANC cannot do these anymore & I have several foot dr bills to prove it.

The ANC needs help with washing clothes, vacuuming, dusting, changing beds, arranging closets, arranging drawers, putting up towels, etc. Of course, the ANC may need these things done for them instead of just help.

A child can operate a tv and a vcr. An ANC cannot. An ANC cannot learn new things if they have short term memory lose.

At night, the floor needs to be picked up so the ANC doesn't fall. The bathrooms need to be kept clean by the caregiver because the ANC cannot clean thoroughly any more.

I had monitors installed so I can listen at night or any time i feel she might have a problem. Makes nights interesting since my mom snores.

I keep her checkbook. Sometimes I have to make out the check and have her sign them, which takes 3 times as long as it would if I just did it myself. Have to keep her interested & the mind active. Other times, I have to completely pay bills because she is not capable.

Taking an ANC out also makes things interesting. With a child, you have a stroller & a diaper bag. With an ANC I have a walker--later a wheelchair, and a bag with a change of clothes, bandaids--because they somehow always need one, ice to put on abrasions, ice packs for the ice, and ointment for abrasions or dry skin. Only difference is the bag is bigger. Also need plastic bags or protection for car seats in case of incontinence.

A caregiver is a person that an adult needing care is dependant upon for his/her safety.

From GivinCare

Hello, all..
In response to the request for definitions of a Caregiver, here is a site on that topic specifically. I particularly embrace the "labor of love" definition.

Alzheimers.com -- Who Are The Alzheimer's Caregivers
(http://www.alzheimers.com/L3TABLES/L3T-468.HTM)

My own definition:
The Alzheimer's Caregiver:
Pre-requisites: (* If you want this choice position...*)
Endless patience to cajole your loved one into cooperating with little necessities of daily living, like getting out of bed, going to the bathroom, getting in and out of the car, brushing the teeth, eating, dressing, interacting with her/his environment.
More Endless patience for dealing with Social Security, the bank, Medicare, Medicaid, Social Services, the hospital, homecare helpers, adult daycare.
More Endless patience to endure the thoughtless and insensitive remarks and false guidance from those only moderately informed about the disease.
Loving, caring and nurturing of a loved one so confused by the disease process that their behavior at any given moment is completely unpredictable; for example wandering away, going door to door to ask where her/his mother is, trying to pay for lunch with a soiled Depends, managing to order a glass of wine by holding up one finger and saying the word "same", calling a daughter "Mommy", Debi, Audrey, Frank or Howard, resenting the caregiver being on the telephone and removing all clothing as a consequence, finding a pair of scissors and cutting up all of her/his clothing, talking for hours with the mirror.
Loving, caring and nurturing of a loved one that can no longer do a single thing for her/his self; feeding, bathing and dressing take an incredible amount of time, patience and energy.
Continuing to reach out to a loved one that is rarely responsive, knowing that every now and again you will see a shining, glowing expression and response that reminds you that YOU do make difference.
: )Debi Owens

Hello, again, all..
I just wanted to share another great Caregiving website I came across.
Caregiver Network
(http://www.caregiver.on.ca/)

From InPainToo

What is a Caregiver?

I was my Father's caregiver until he passed away one month ago. I gave my Father all the love I could. I watched out for his well-being. And I tried my darnest to do what HE would have wanted me to do for him. My Father died of heart failure, complications of Alzheimer Disease on October 29, 1998 at the age of 74. On that day, my life was changed again. One of the other times my life had changed was when my Mother died and I began my 4 1/2 years as Dad's primary caregiver. Before my Mother's death, it was discussed that Dad would live with me or one of his other children or go into a nursing home (the latter he preferred, so he wouldn't be a burden to anyone).

To all our surprise.....Dad wanted to live by himself, on his own with his new found freedom (Yikes!). Dad was in the early stage of this horrific disease. I only live 10 minutes away...so with a lot of help from the other sibs to make his house "Alzheimer Friendly"...it was agreed. For the next year and a half Dad did what he wanted to do, with the help of all his friends, family and even his own town. He was in relatively good health, except for the Alzheimers. He did a lot of walking.....and his family did a lot of praying for his safety. I toke all the safety measures I could. I notified local police and registered him in the "safe return program at the S.E. Penna Chapter of the Alzheimers Association.

Slowly over that year and a half, as Dad slipped further into his affliction; it became increasingly difficult to handle his daily tasks. HE became fearful and decided, on his own, that it was time to go somewhere. We found an assisted living facility, specific to Alzheimers and other dementia, where he could be safe, and happy; and not have to worry about laundry, zapping his meals, and the tideous chores of personal hygiene. He had worked hard all his life for the money he had.....and I saw no reason not to spend it on his happiness. He loved this place....until he started having incontinence problems.......This was the start of the final stage of his Alzheimers disease.

After a year and a half of living safe and happy (not without the normal disease progression problems though)......he was afraid. No not afraid.....he was terrified. Things began happening to him that he could not understand or even fathom. I had to make health decisions for him now.....which I had trouble understanding. Dad went thu the normal aggression stage and came out of it worse off. It caused more heart troubles.....it was discovered he had recently suffered mini stokes in his brain....and fluids had built up in brain ventricals. He had to be placed in a nursing home facility. This was his wishes...he also had a living will that spelled out for me what to do. And I did it with only thoughts of what he wanted me to do.

Our family was lucky, in the fact that Dad did not last long suffering in this very sad, sad, sad stage of the disease. Stage 3 began in May of this year. He lost his battle only six months later...and I lost my Father, my best friend, MY CHILD. All I ever did for him was to try to give him the best care and all the love I could. And I did care for him.....in many, many, many ways. And I did love him to the best of my ability....and you know what? That was the easy part...being his caregiver. Unconditional love! He taught he that. This is what being a caregiver is.

Joanie (InPainToo)

In Passing: Those We Must Remember

From LadyPoet2

Dated 11/25/98
Thanks for your updates. My dad passed away last night.

From LD4TPC

Dated 11-27-98
Dear Karen,
Please forward our issue of The Ribbon to otherswho need it more.
We have greatly benefited from your invaluable efforts, and have shared the newsletter with others who have an interest.
My Dad passed away Sunday of liver failure, peacefully and quickly, and very unexpectedly.
Thank You again for a tremendous service.

ld4tpc
plane1998

From PlanrGal

Dated 12-7-98

My father ended his battle with this horrible disease yesterday. I was on my way to try to get him to eat some food. He died before I got there. We'd just put him in a nursing home three months ago and the decline was so fast. It's funny....I kept saying I hoped he would die, now I can't stop crying and wish I had that "last time" to feed him his lunch.

E-mail Box

From FLYINGFGRS

HIP HIP HOORAY....so glad that you/we took the time to thank our host's for all their hard work...now I would like to personally thank you two for the FANTASTIC job you do on the newsletter....without you we would be so out of touch......from the bottom of my heart

THANK YOU......fondly Donna

From PhoebeC 00

Thanks again for another wonderful issue. I often wait to read mine until I "feel" the need. It alsways occurs on one of those "bad" days. I wish I could change things, but know I can't. Doesn't always help...

Phoebes

From Bdref

Hi,
Thanks for a terrific Thanksgiving issue of the Ribbon. I have learned so much about how to deal with my care of my AD mother. Many thanks!!!

My mom's doctor put her on Aricept, hoping that it would improve her condition & memory. All it acted like was a stimulant, but has not improved her thinking at all. She has gotten into lots of mischief, wandering around town, actively more angry etc etc. My daughter & I decided to take her off the medication as it seemed to be causing us much grief. She does seem calmer now. Anyone have anything positive to say about this drug? Any one also have a bad experience with it? Thanks, Bev

From Dayle829

I wanted to write to you and thank you for always sending me this wonderful news letter every month, you are truly a wonderful, loving, thoughtful person and I appreciate everything you do.

My mother was diagnosed three years ago, and her children have done nothing but fail her ever since, including myself. We have continued to fight among each other about who can take care of her, who can help put money in to help my mother live day by day since she has nothing, and accuse each other of everything!! We came from a divorced family and were never really brother and sisters, and now we've ruined any hope of that ever to come. My mother lives mostly with me and my husband, who was diagnosed with a serious illness himself, so I take care of both of them. My brother takes her on Thursday afternoon to Sunday evening to give me some break, but financially he does nothing. We have two other sisters who do nothing! I was wondering if any other members out there have the same problems that my family is experiencing? The constant fighting to get the other siblings to do their fare share? If there is anything we can do to make the other siblings financially help take care of our mother, because she is wiping out my finances. I just got the "Free Medication Program" off the Ribbon and am going to try that since her medication is so expensive! Thank You to Psears 123!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I guess I'm just going crazy with everything, and feel as though there's no hope! My marriage is in jeopardy, my children are so unhappy, and my brother and sisters don't care!

Thank you for letting me get this out! GOD BLESS Vicki

From ESKIMODEE

Thank you so very much for sending me issues of The Ribbon. Sometimes it takes me a while to have time to sit and read it, but when I do, I certainly learn to appreciate what I have learned, done and most importantly appreciate the people I have met in person and on line who have been supportive of my endeavors.

Although my 82 year old mother does not have Alzhiemers, she did suffer an embolic stroke 7 months ago. I am the younger daughter of 4 children, with a Down Syndrome brother following me. Morally and legally, I am the caregiver , legal guardian and POA for both these "dependent people". I defied the "odds" and was determined to push her to the limit to get her as far back to normal as possible. Did I get support from my two older siblings??? MINIMAL if any....but, I am learning to deal with that personal aspect separately. My mom is making progress. The sacrifices seem great, but it's what I want to do. My younger brother has learned the value of "family" and caregiving also. In spite of his "handicap" he has behaved more normally than my two older siblings, and helped me a great deal.

As long as she has physical health on her side, I know Mom will make it slowly but surely.

I have realized in the beginning of these past seven months what many of The Ribbon readers must deal with every day, for long periods of time. I understand fully what decisions have to be made in spite of the heartbreak. I'll never forget the time I moved Mom from one hospital setting (due to insurance) to a sub-acute program closer to home for more rehab. She looked at me as if I just stuck a knife in her heart and refused to speak to me for two days, even though my brother and I visited her EVERY DAY of the 8 weeks that she was hospitalized. Yes it hurts, but I felt it was the best thing for her....and it was.

Yes, she eventually came back to her own house, yes she is able to care for her personal needs (as well as can be expected), but although her "services" have run dry, I and my brother are now her therapists (physical, speech and occupational). I have lost most of my social life and some friends who probably werent friends to begin with. I have made new friends in their place who understand....alot like you all.

Please continue to send me The Ribbon. It helps me mentally and spiritually.

ESKIMODEE aka Dee

From DKThomp

Click here: A Sonnet To Christmas From Alzheimer's Outreach
Hi All, Here is an early Christmas Card from Ann and me.
In His Great Love,

Doug Thompson

I hope you are taking the time to stop, enjoy the sights and sounds of this Wonderful Season. Remember a bit of joy makes a rough day go a little easier.

See you at Christmas!!
Karen (KMenges581)
and
Jamie (DrMOM1955)