Volume 1, Issue 15 - The Ribbon Newsletter

With the crashing of Karen's AOL 4.0 and her sending out a Bulletin we heard from subscribers we hadn't heard from in a while. It's nice to know that your newsletter is making an impact out in the world. Some of the replies will be listed in our email section. We wish to thank everyone for all the wonderful letters you send to us. Keep the comments, ideas, questions, and articles coming in!

DEAR ANN LANDERS: I read this article by Virginia Bass of El Cajon, Calif., in the San Diego Union-Tribune and hope you have room for it in your column.
--FAITHFUL CALIFORNIA READER

DEAR CALIFORNIA: Thank you for sending it on. I found it very moving and am happy to share it with my readers. Here it is:
I was the caregiver to my mother and her twin. They lived to ages 95 and 96. Now, I find myself on the other end of the scenario, which is difficult in a different way. I hope to be spirited and wear a smile for some time to come (I am 71) but intentionally prepared my children for times ahead by writing a poem. I gave each of my children (ages 45,43, and 34) a copy and told them, "I mean it."

To My Children

When I spill some food on my nice clean dress
Or maybe forget to tie my shoe,
Please be patient and perhaps reminisce
About the many hours I spent with you.

When I taught you how to eat with care,
Plus tying laces and your numbers, too,
Dressing yourself and combing your hair,
Those were precious hours spent with you.

So when I forget what I was about to say,
Just give me a minute - or maybe two.
It probably wasn't important anyway,
And I would much rather listen just to you.

If I tell the story one more time,
And you know the ending through and through,
Please remember your first nursery rhyme
When I rehearsed it a hundred times with you.

When my legs are tired and it's hard to stand
Or walk the steady pace that I would like to do,
Please take me carefully by my hand,
And guide me now as I so often did for you.

DEAR ABBY: Please remind your readers that elderly people who live alone can be vulnerable to "caregivers" who take over their lives-and bank accounts. I attended the funeral of a neighbor I'll call "John" who was starved and neglected while his live-in "caregiver" took 7 to 10 vacations a year. She was gone all day and many nights. She left him sandwiches and liquid nutritional supplements in place of meals, and phone numbers to call if he got sick. Well, he did get sick, several times, but was too proud to call for help. During the last two months of his life, he was often confused. He died of congestive heart failure from a cold left untreated. The caregiver blamed his death on "fumes" from urine-soaked carpet because John's two elderly dogs weren't housebroken. The truth is, John was too sick to open the patio door, and the caregiver was never there to let the dogs out or clean the carpets. John changed his will to make the caregiver the trustee and bought her a new car. She is allowed to live in his house until it is sold, and she is selling off the contents of the house. I know for a fact that John and his late wife wanted their sizable estate to go to their elderly brothers and sisters and the county humane society. Their estate is being plundered. Regrettably, no one intervened on John's behalf. Too late, I learned that every state has an agency on aging and an ombudsman program that will investigate reports of neglect and mistreatment of the elderly. Friends and neighbors of the elderly living alone must be proactive and contact family or the state if something "doesn't look right."
--NEIGHBOR IN SARASOTA,FL

DEAR NEIGHBOR: Yours is a chilling letter. I hope it will spare similar heartbreak to other elderly who are living without benefit of family nearby. Readers, if you suspect neglect or mistreatment of an elderly neighbor or friend, contact the adult protective services agency in your area. Anyone entrusted with the care of the aging should be carefully screened. The same agency should be able to assist you in locating properly trained and reliable caregivers.

Most caregivers of persons with cognitive disorders reach a point when they need help at home. Tell-tale signs include recognizing that the impaired person requires constant supervision and/or assistance with everyday activities of daily living. Caregivers also find that certain housekeeping routines and regular errands are accomplished with great difficulty or are left undone. It may become apparent that in order to take care of any business outside the home, a substitute care provider is needed.

A number of options are available to caregivers for finding help at home. It is possible to hire a helper from a home health agency (listed in the yellow pages of local telephone directories). Many caregivers, however, find it is more affordable to hire an in-home helper privately. With some foresight and careful planning, it is possible for the caregiver to locate the right person for the job.

For caregivers in California, the local Caregiver Resource Center is available to assist in determining what kind of help would be most useful and what types of resources are available in each community.

An important first step in hiring in-home help is to determine what help is needed and to prepare a list of duties the caregiver would like carried out. This job description should be designed as a work contract which can be signed by both the caregiver and the in-home helper.

Typical duties for an in-home helper include companionship and supervision of the impaired person and direct assistance with personal care such as bathing, dressing and feeding. The in-home helper may also do light housekeeping and home maintenance tasks which pertain directly to the care of the impaired person or which the caregiver can no longer manage without assistance.

The next step is to find the appropriate person to fit the job description. One of the best ways of finding a helper is to get a personal recommendation from a trusted relative or friend. Churches, synagogues, senior centers, Independent Living Centers and local college career centers, especially those which have nursing or social work programs, are good places to advertise for in-home help.

Most communities have attendant registries which are an excellent resource for finding in-home help because they typically provide some initial screening of applicants. When calling an attendant registry, it is important to inquire about their particular screening process and/or training requirements as well as about any fees charged. While some are free, fees for using a registry can vary greatly. There are also non-profit community agencies that maintain lists of individuals available to perform all kinds of household tasks, from cleaning and laundry to repairs and gardening. It is a good idea to shop around and obtain the best service for the lowest fee.

If all of the above sources fail to produce an in-home helper, the caregiver may choose to advertise in the "Help Wanted" classified section of a community college or local newspaper or newsletter. The advertisement, at the minimum, should include hours, a brief description of duties, telephone number and best time to call.

The caregiver does not have to personally interview every person who applies for the job. Some screening over the telephone is appropriate. In screening applicants over the telephone, caregivers should describe the job in detail and state specific expectations listed in the work contract as well as information about the hours and wages. At this time it is also important to ask about the applicant's past experience and whether he/she has references. Then if the applicant sounds acceptable, an interview should be scheduled.

In preparation for the interview, the caregiver should have a list of questions pertinent to the job description and a sample work contract ready for the applicant to read. The following are some suggested questions for the interview:

Immediately after the interview, it is important for the caregiver to write down first impressions, and if possible, discuss these with another family member or friend. Consider the person most qualified for the job and with whom you feel most comfortable. Always check the references of at least two final applicants. Don't wait too long to make the offer, as good applicants may find another job. If the offer is accepted, the caregiver and the in-home helper should set a date to sign the contract and begin work. Both employer and employee should keep a copy of the contract.

As an employer of a "household employee," there are several legal considerations. First, household employers should verify that their household insurance (renter's or homeowner's) covers household employees in case of an accident. It is also imperative that the employer be fully informed of the legal responsibility of paying taxes for household employees.

As of this writing (1996), if the caregiver pays more than $1,000 to a household employee in a calendar year, he/she is required to withhold Social Security taxes of 7.65 percent and file them with the Internal Revenue Service annually. The employee is required to pay an additional 7.65 percent. Employers may report the worker's wages and tax liabilities on their annual 1040 form. For information on paying federal taxes for household employees, call (800) TAX-FORM and ask for Publication 926 which explains specifically about household employees. The employer will need a W-2 form to file at the end of the year and a copy of the form should also go to the employee. A W-3 form is also required if an employer has more than one household employee and is filing more than one W-2 form.

If the caregiver pays more than $750 to the household employee in one quarter (three months), he/she is required to register with the California Employment Department by calling (415) 929-5700 and obtaining a DE1 form. Employers must also file quarterly state withholding tax and are required to pay unemployment taxes for the household employee. If more than $999.99 is paid to the employee in one quarter, the employer must also pay disability taxes for the employee. If wages paid total $20,000 or less annually, the employee may elect to file an annual contribution return instead of filing quarterly.

There is one other requirement which every employer should know. Each employee is required to fill out an Employment Eligibility Verification form I-9 and a record of this should be kept on file. The penalties for not paying taxes on household employees include paying the back taxes, plus interest and penalty fines. FCA advises both household employers and employees to be informed and comply with state and federal tax laws. There are often local services available to seniors who need assistance in filing tax statements for household employees. The Caregiver Resource Center or Senior Information and Referral in your community would be able to identify these organizations.

The relationships between the caregiver, the impaired person who requires assistance and the in-home helper are very important. Consequently, it is imperative that the caregiver take the time to go carefully through the selection process. In California, the Caregiver Resource Centers are available to assist caregivers in locating community resources and finding the in-home helper that fits each individual's needs. Lists of interview questions, employer's and employee's rights and responsibilities, and more detailed information on types of assistance available to caregivers can be obtained from the Caregiver Resource Center in each community. For more information, call (800) 445-8106 (California only) or (415) 434-3388.

We have a young man in our midst who is doing some important things for us. His name is Kevin AKA Weather91. He is the son of PampMom. He is working on a website for The Ribbon. It will hold back issues of the newsletter plus some other most requested articles. He will also have a chat room where we can connect with our web members for informal unscheduled chats. Karen and I are giving Kevin ideas but he is doing the work getting it all set up. As soon as we are all set, we'll give you links to get there. Thank you, Kevin!!!!

Need a daytime Alzheimer's/Dementia Chat?
Can't make the Tue. and Fri. nights?

Come visit the NM Alzheimer's Chat room
http://.www.nm-alzheimers.org
NM Main

Chat Room

M--W--F.
10:30 am - 12 noon MDT
Eastern 12:30 am - 2:00 pm
Central 11:30 am - 1:00 pm
Pacific 9:30 am - 11:00 am

Time wrong? Need a private chat?
E-mail Alzjane198@Aol.com and we will work something out.

At an international conference in Amsterdam Wednesday, new hopes emerged in the battle against Alzheimer's, reports CBS News Correspondent Mark Phillips. Boston geneticist Dr. Rudolph Tanzi described a newly discovered gene abnormality that may explain what causes the debilitating disease. Tanzi explained how brain function in the elderly becomes impaired when the contact point between brain cells becomes clogged up with a kind of brain grunge called alpha-beta particles. Normally a protein called alpha-2M also shows up between the cells and attacks and destroys the clogging particles. But when the newly discovered gene is abnormal, the cleansing process doesn't happen." Then in a lifetime you're gonna get a little bit more accumulation of this stuff than the person who has a perfectly normal alfpha-2m and that might be why you get Alzheimer's at 85 and your neighbor who has a normal a2m doesn't," said Tanzi. Researchers warn they have not found and instant cure. What they have found is a pathway that could lead to effective treatment. The brain substance that they have discovered is linked to Alzheimer's has been known about for some time. Researchers are familiar with the substance, and they think they can find a way to fix it."What's really fantastic here is that it's not just a drug that's going to treat symptoms that we're aiming at," said Tanzi. "It's a drug that would get right to the root causes of the disease even if it takes five to ten years." As more people live longer into the Alzheimer's danger zone, the need for such a cure has never been greater. Reported by Mark Phillips

AMSTERDAM, (July 22) - Exposure to light may help sufferers of Alzheimer's disease regain sleep-cycle rhythms and may reduce the need for institutional care, researchers said on Wednesday. Data from Dutch and Japanese studies released at the Sixth International Conference on Alzheimer's Disease showed that patients who received two hours of bright light therapy for a month registered improvements in sleep and in body temperature. Alzheimer's disease is a progressive, degenerative disease that attacks the brain and results in impaired memory, thinking and behaviour. People afflicted with Alzheimer's often suffer disturbances in circadian rhythm, which affects body functions such as sleep cycles, temperature, alertness and hormone production. Impaired sleep and nocturnal restlessness place great burdens on the sufferer and the caregiver. Traditional sedatives have limited usefulness and are accompanied by side effects. "This is an important factor for home care and a major factor on whether people have to be institutionalised," said Eus Van Someren of the Netherlands Institute for Brain Research in Amsterdam. "Alzheimer's patients often receive very low light and receive little physical activity," Van Someren said. "Both of these are very important to our biological clocks." Some of the Alzheimer's patients studied were placed in front of bright light panels for two-hour periods, while others simply had brighter light bulbs placed in their living rooms. Both groups showed improvement in their sleep patterns. Researchers also tested low-level electrical pulse therapy, which helped stimulate circadian rhythm recovery. Van Someren said outdoor sunlight and exercise also appeared to help restore circadian rhythms, although different patients may need the light therapy at different times of the day. As many as 25 million people worldwide are estimated to suffer from Alzheimers. Most sufferers are aged over 65.

13:14 07-22-98

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

I have been gone for a while,as the oldcomputer that I was using "retired itself!" Have only recently got another computer. My Mom died on June 3 of pneumonia, and I have been going through some difficult times; haven't gotten in touch with ya'll. Thank you so much for the mail (today's). It motived me to move out of inertia. I still want to talk with ya'll; forgot the day and time of chat room. I'd appreciate the opportunity to participate whenever I can. It has been a long 7 years, the time Mom was with me. I truly thank God that I had that time with her. She was in constant pain for 3 weeks prior to her death. I think her dying with a smile on her face was a gift to me from her. Thank you so much for making contact with me.
Love,
Connie

Thank you and Jamie so much for your efforts in putting together The Ribbon. I read it and keep each issue because the information we receive is so clear and necessary, that I keep it as a reference. This has become my Encyclopedia because I keep referring to it when I need some additional information. I only wish that some doctors I've been in touch with had the knowledge that you people have. And the compassion - and the sympathy. I have had the good fortune to meet some excellent physicians, but unfortunately, they are the rarity rather than the norm. It is certainly time that medical schools teach physicians to pay attention to the psychological and emotional needs of patients and their families as well as to their physical needs.

I appreciate your prompt response to my email request. I know I have a long road ahead and alot of concerns to address. I hope that the information you can give me will help out my whole family as I plan on sharing it all with everyone. Being a caregiver and working two jobs really takes a toll on you. We do the best we can and hopefully with God's help and friends/family we'll all get by. Thanks Again, Louise

Yesterday my mom had a reaccuring nightmare and feel out of bed (again) trying to "escape something". She severely broke her left wrist and cannot drive until she sees a doctor next Tuesday after the swelling goes down. Today was my dad's 76th birthday and bless my sister, she left the business she and her husband own to take them to their support groups with a surprise cake for him to share with his group. He loves it, as they sing songs and play games, while the caregivers can vent and give support. My heart is breaking for both of them and the feeling I get from my sister is that because I live far away, I don't care as much as she does, so she "filters" things for me. *sigh* I live far away, not from choice but circumstances of my husband's job. I think that those far away who don't deal with this everyday have a lot to contend with also. Guilt for not being there, guilt because they are relieved to not be there and dealing with radical changes if you don't see or talk to the AD patient almost daily. At least this is how I often
feel. Well, the purpose of this letter is to get on your mailing list, not to bend your ear - sorry. Thank you for all your work. . .

This is Caren responding to the test message. I am on your list. My server is SW Bell. I truly apprerciate The Ribbon. I share it with my sister who in turn shares it with her sister-in-law. A most timely topic covered was #13. Our family just can't seem to control the arguing with Mother (the one with AD). It is my sincere prayer that this newsletter will help all of the family. Thanks again for all you do.
Caren

Got issue 14 and the test bulletin. Comes much better on AOL. Thanks again for the really great job of the newsletter. I find most of my concerns and questions get answered. Also I put all the issues together in a booklet and the director at Arden Courts (Manorcare Alzheimers Care facility) has made a copy as she felt there were excellent and wanted to be able to share them with those in the support group at the facility (which I belong to). God bless people like you and all that share in the newletter.

Hi, I stayed glued too. It was truly "The Good, The Bad, and The Ugly," wasn't it? I liked the segment about the 90-year old man's improvement after a year. Was horrified at the hidden camera segment in one home. Most of all, I like the doctor's approach of animals, plants and birds and children. That's the approach I think they should all take. I know my aunt was like a different person when my daughter gave her a 10-year-old sheltie (here with us now) and my mother was prescribed a dog 9 years ago. She likes Pepper more than anyone else. Also was informative about screening homecare "nurses." It's just something else to see how some folks prey on the weak, be it children or the elderly. Surely in the near future something MUST be done to improve things and looks like they're on the way. It just alerts us, as the children, to be vigilant.

We have much more e-mail to print but due to space restrictions we'll wait until next time.


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