Volume 4, Issue 5 - The Ribbon Newsletter

Symbolizing the way we are all woven together
in our fight against Alzheimer's Disease

Volume 4, Issue 5
September 3, 2000

There is an announcement to be made to someone who is very special to us!!! September 1 was Kevin's birthday! For those of you who are new, Kevin a.k.a. Weather91@aol.com is the Webmaster for The Ribbon and also for The Gathering Place. This young man is absolutely the greatest and we hope you will all join us in wishing this:

Happy Birthday Kevin!!!!!!!!!!
We Love ya

Using Family Meetings to Resolve Eldercare Issues
By Mary Waggoner

A crisis can bring a family closer together and illustrate strength and love; or it can drive a wedge of resentment between members. Whenever a loved one's heath, safety or well-being becomes a concern, it is important to be proactive and address your loved one's issues. If the issues come to a point of crisis, families – often spread out across several states – need to call themselves together to discuss the changes which are occurring and will occur in the future.

Stephen Covey, author of The 7 Habits Of Highly Effective People, states: "Most families are managed on the basis of crisis, moods, quick fixes, and instant gratification – not on sound principles. Symptoms surface whenever stress and pressure mount: people become cynical, critical, or silent or they start yelling and overreacting." If this is how you perceive a family meeting may progress, it is important to understand that it doesn't have to. You can have family meetings that are under control and structured. Understand that you will never be able to please everyone all of the time, but that you are not meeting to meet your individual needs but those of your aging loved one.

Your first two family meetings should be small – only siblings or close family members who are in direct contact with your aging loved one. Regardless of how you feel about your extended family members, it is imperative that everyone be involved in the meetings. If meeting all together in person is not possible due to separation by miles, arrange for a conference call through three-way or conference calling. This service is available through your local phone company for a nominal monthly fee. Whether you choose to have an informal meeting or a structured meeting depends on your family style and how your family best works together.

The first meeting should take place without your loved one present, as topics may be discussed which could cause he/she to become upset. During the meeting, you need to take a hard look at the situation at hand. It is best if you all have prepared three or four concerns (and even possible solutions) to discuss beforehand. Together, you will need to begin planning for the future and, if needed, take responsibility for specific duties. The goal of the first meeting is to create a plan of action to work together as a team, or if nothing else, call a temporary truce to a family feud.

Don't be discouraged if your first meeting doesn't run smoothly. Everyone involved views the situation from a different perspective. Human nature is rather egocentric, so do not be alarmed if most are concerned with how the changes will effect them. It is easier to be defensive than admit fear.

If you will be discussing a topic that is going to be heated, it is best to hold that subject until another meeting where a neutral moderator can be present. The moderator should not be related to the family. It could be a family friend, a member of the clergy, a social worker or geriatric care manager, for example. For topics that will cause irrational responses, it is best to have all parties prepare, in private, why they feel so strongly. Many times, putting something in writing can make the "it" feel less abstract and frightening. You may find you all have a similar fear and are simply reacting in different ways.

You may ask your loved one's legal or religious advisor(s) the be present at a family meeting of the serve as facilitator or moderator. Geriatric care managers are usually skilled facilitators or social workers who can lend experience and balance to difficult family dynamics. Consult the National Association of Professional Geriatric Care Managers at http://www.caremanager.org for a directory of local care managers. It may be a good idea for the family members to chip in for the care manager's fees, rather than one member managing the relationship to avoid perceptions of "bringing in hired guns."

Planning a Meeting

We don't always have the luxury of meticulously planning family meetings due to sudden illness, medical emergencies or family squabbles. But we can maximize scarce time by sticking to a few rules of thumb.

Establish a "goal" for every meeting that is agreed upon ahead of time by all (or almost all) participants
Plan to move incrementally, rather than address ALL issues in one marathon session
Select a comfortable and "neutral" location
Most meetings function smoothest with no more than seven participants
Invite close relatives only
Collect and share background information. For example, bring fact sheets on Alzheimer's Disease if your loved one is recently diagnosed, or legal documents if the topic relates to estate planning
Prepare – and stick to – a short agenda that includes adequate time for each member to participate
Allow the agenda to be slightly adjusted only at the beginning of the meeting
E-mail or snail mail all materials to all participants ahead of time.

Conducting the Meeting

All participants must remember that they are in a meeting. Every meeting should have rules and guidelines. Unfortunately, when it comes to family meetings, many do not recall this fact. In the beginning of each meeting, gently remind all parties to have respect for one another and follow some rules that you have all agreed upon. If your family works smoothly and in unison, then focus on exploring your loved ones concerns rather than your own. Here are some rules that you may want to include:

No one is allowed to dominate the meeting. If you need to, use a timer and give each family member 10 minutes to state concerns and points of view
Create a list of all concerns and then as a group number them 1 through 5. 1 being the most urgent, 5 being the least urgent. Tackle each one in the order of urgency, not in the order of preference
When someone is talking, other must not interrupt. You wouldn't interrupt another co-worker in a board meeting. Give your family members the same respect. If you have a comment, write it down and discuss it either at the end of their turn, or the beginning of yours
The facilitator or leader should be fair, but firm, to ensure that the meeting follows the agenda and doesn't take too much time
Use only "I" statements. Avoid finger-pointing accusations that begin with "You..." This one is difficult to master
Remember that your loved one still has the right and responsibility to make his/her own decisions (unless incompetence or dementia is the issue)
Stick to the topic. It is easy to get off topic and revisit old family arguments. Keep the topic of the meeting posted where all can see it, whether on a central board or on the top of everyone's note sheet. This is also difficult to master, but possible
Reach a sense of closure on each item of the agenda, or at least set an action item or next step. You may need to address issues that arise during the meeting and put them in a "Parking Lot" to be addressed at a later time
Agree on what to discuss at the next meeting and schedule a time and date before concluding to avoid confusion.

Following Up on Meetings

After your first one or two meetings, your family will have found a style that works best for those involved. It is now time to begin discussing possible solutions. Include your loved one in the meetings if they are able to comprehend what is happening. Make sure to listen to your loved one first. Allow your loved one the time s/he needs to express their concerns, wants, and desires. Do not degrade their concerns. Although their priorities may be different than yours, unless doing as they wish will put them in physical harm, do your best to accommodate their wishes.

For example, the family might feel that it is best for Mom or Dad to move into a residential facility because there they will have meals provided, laundry done, and opportunities for socialization. Mom or Dad may wish to stay in their home for now because that is where they feel safe. Hiring in home care assistance for a few months may be the compromise for both sides. Your loved one has usually lost much control over their own life and even their body by the time you are holding a family meeting. Be gentle with them. It is upsetting for them to watch their world slip away and not have a say in what is happening, or to see discord in their family.

Roles and Responsibilities

Once solutions and duties have been agreed upon, you should discuss the possibility of having a family spokesperson. This is especially helpful for those families who are located in different areas of the country or world. It is less complicated when there is a single point of contact for information. Having a family spokesperson is also a way to encourage effective communication, avoiding the "operator game". The "operator game" is when one person passes an original message on to another and this person now sends what they heard onto the third person, etc. By the time the last person is reached, the original message is completely distorted. This can cause major problems within a family.

The spokesperson will represent the family if your loved one is unable to confer with professionals. S/he will keep in touch with the doctors and relay the information to the other family members. Additionally, the spokesperson may have responsibility – or share responsibility – for health care and legal decision-making.

Care management duties should also be divided up. Even if some live far away, they can contribute by calling your loved one, sending them cards, handling some paperwork, or even paying the bills. If someone else has small children and lives nearby, they could cook an extra serving of dinner and bring it by for a visit. Another family member could be responsible for coordinating the services needed while your loved one remains at home.

It is inevitable that one person will shoulder the majority of the duties, but if all are participating as a team, the chance of resentment building are decreased. Talk to your family members and see about coordinating respite and vacation times so that you are not overburdened. When necessary, bring in the appropriate professionals, such as geriatric care managers, elder lawyers, financial planners, counselors or religious advisors and insurance or paperwork professionals. Consider having family members contribute to a fund to pay for in home care assistance and respite workers.

Making It Work

By conscientiously planning, conducting and following up on family meetings, members can assure themselves that they are working in the best interests of their loved one and minimizing unhealthy family dynamics. Remember that you are all working in the best interests of your loved one who has lost some capacity to handle their own affairs. Be a positive participant and rise to the occasion.

Organizing a family meeting is a complex task. It involves coordinating the schedules of many to discuss a topic close to their heart. Having a predetermined time and date to meet will help all members be able to plan accordingly. You may find that it is convenient to keep in touch via the Internet. MyFamily.Com (http://www.myfamily.com) offers families the ability to coordinate schedules through a calendar of events, post updates, and even post pictures on the site! For each topic included on the calendar, those listed in your database will be notified via email. This is excellent when coordinating multiple doctor appointments, family schedules, and keeping everyone updated. It is also a fun place to show off the grandkids new art work and to remind everyone that they are a family as a whole, not only during a crisis.

Resources and Reading

ElderCare Online (http://www.ec-online.net) offers comprehensive and practical articles and tools on the range of caregiving issues. Family caregivers are welcome to print off a limited number of copies to share with family members in family meetings. Professionals should contact us for reprinting and copyright instructions.

Take the time to read documents that specifically deal with the issue you are facing, such as Alzheimer's Disease, estate planning or residential options. The following resources belong in the arsenal of every caregiver:

ElderCare Organizer: Helps you collect, store and quickly access your loved one's personal and financial records. This reduces time spent looking for information during emergencies and helps improve legal and financial decision-making.

ElderCare Medical Planner: Essential workbook to manage complicated care plans and busy schedules. This improves your ability to talk with your loved one's doctor, manage complicated medical regimens and avoid complications and medical errors.

Financial Caregiving Article: Easy-to-follow checklist of issues to consider.

ElderLaw Basics: Concise explanations of the different legal instruments that all adults should have – Durable Power of Attorney, Health Care Proxy, Will and Living Will.

The Complete ElderCare Planner: Joy Loverde's acclaimed book is great tool for managing aloved one's affairs. It has recently been updated for 2000.

Talking With Your Aging Parents: Mark Edinberg's comprehensive guide to talking with your loved one's about legal, financial, housing and health issues.(Out of print, but available in many libraries)

Reprinted by permission of Rich O'Boyle
ElderCare Online
"Tell me why -- Show me how -- Hold my hand"
http://www.ec-online.net

Vote Alert!

For those of you who have not been to The Ribbon web site lately, you should be aware that you may exercise your right to vote....for the Top Alzheimer's/Caregiving Site and, as a bonus, find access to some of the very best caregiving sites on the Internet.

The site is very well done and is brought to us by A Year to Remember and our dear friend there, Brenda.

Please take the time to vote!

You will also open yourself up to a lot of good information and wonderful support.

Karen

Top Alzheimer's/Caregiving Sites, brought to you by A Year to Remember
http://new.topsitelists.com/bestsites/bpsibley/topsites.htm

Editor's Note: After this issue was "ready for press" and before it actually was sent out, we received notification that The Ribbon won 3rd Place for the month of August as a Top Alzheimer's/Caregiving Site. We are very honored and thankful, to you, our readers for all the support we have received. Our award is posted on the main page of The Ribbon web site.....www.theribbon.com.

Pending Law for Caregivers

Sent by Cwadephill

Thought you might take a few minutes to help out by writing a short letter supporting this bill........

Help CareGuide help families!

Dear Friends,

Did you know that there is a bill pending before Congress that assists families caring for a frail older adult? And you can help make it a reality.

What is the bill before Congress?
Information from the National Alliance for Caregiving states that Senate Bill 1536 would fund and extend numerous programs that were created for caregivers of the elderly by the Older Americans Act, first passed in 1965.

The aspect of the Older Americans Act that is up for renewal supports the "National Family Caregiver Support Program" for the elderly and their families. This program funds many services such as respite care, information and resource hotlines, and caregiver support groups through local community agencies for the elderly and their families.

In September, Senate Bill 1356 is scheduled for consideration. The bill earmarks $125 million per year for five years to these caregiver support programs.

How you can help

Write your representatives. Legislators, both in the House and Senate, need to hear from caregivers and families about this issue. You can encourage legislators to support programs for caregivers of the elderly by sending an email or written letter to your Congressional representatives. We especially urge you to contact your leadership and colleagues in the House and ask them to bring S.1536 or a similar bipartisan compromise bill to the House floor.

Tips on writing letters to Congress members

Here are a few things to keep in mind when writing to a Congress
member:

Your letter must be sent in August to reach your Congress member when he or she considers the issue. The letter should, in the first sentence, specifically ask them to vote for passage of Senate Bill 1536 to reauthorize the Older Americans Act. If you have a personal story, tell it! Legislators need to know why this issue is important and why it will benefit caregivers like you. Keep it short and simple.

You can use the following address to send a written letter:

Your Senator's name
United States Senate
Washington, D.C. 20510

Your Representative's name
United States House of Representatives
Washington, D.C. 20515

Dear Abby

DEAR ABBY:

My wife of 57 years, who suffered from Alzheimer's disease, is gone now. I was her caregiver until the day before she passed away. Sometimes she would do things that made me angry and I would raise my voice to her. I knew she was not responsible for her actions.

How I wish that instead of raising my voice, I had given her a big hug and told her, "It's all right." I will regret to my dying day that I didn't show her more love and compassion.

Abby, had I known then how I would feel now, I would have hugged her from the time she woke up until she went to sleep. I would like to tell all those who have a partner or a loved one who is incapacitated to love them and adore them even if they don't appear to respond to your love. Please don't wait until it's too late.

-- BROKENHEARTED HUSBAND

DEAR BROKENHEARTED:

Caring for a loved one who cannot give back is bound to try anyone's patience. You are only human with limited emotional resources, and that you occasionally raised your voice is not unforgivable. Please forgive yourself. I'm sure your love over-shadowed your lapses. You showed her your love by caring for her steadfastly and apparently lovingly.

Today, it is understood that full-time caregiving can stress people to the breaking point, and caregivers are encouraged to take a break now and then to replenish their souls. Caregivers can be more effective if they can get away for a rest. Services to caregivers are available; the Alzheimer's Association is an excellent resource.

Printed in The Tennessean
Editor's Note: I highlighted and made bold the sentence. I think that is something we all need to get ourselves to understand. No one should have to live with regrets like this when we are all only human.

Email Bag

From CAREVOICE

Dear Fellow Caregivers,

Yesterday, I did something I've been wanting to do since CBS aired the special on Dr. Harry Goldsmith's experimental surgery for people with Alzheimer's. Talk with him personally.

You may recall, at that time he had operated on five people--one who was featured on television and who improved markedly. It was reported that the surgery cost between $150,000 and $250,000. Still, I considered the possibility for my father who turned 90 this past Tuesday, the same day I turned 41.

The surgery as you may or may not recall was described as cutting the omentum, a blood rich tissue containing stem cells (the omemtum is tissue that connects to the underside of the stomach and connects to the intestine--I can't really visualize this nor can I be sure this is exactly correct-- but for those who can, I included it here!). He stretches this oxygen-rich tissue under the skin up into the head and lays it atop the brain where the blood cells are dying.

Anyway, what I did was to locate Dr. Goldsmith and we must have talked on the telephone for nearly an hour. An articulate and passionate doctor about the potential for this research, I fought goosebumps as I spoke with him. It was difficult for me to restrain myself as I asked him question after question, including the important one (for me), "Will you operate on my father?"

"How old is he?"
"He just turned 90."
"I cannot."
"Why?... We will pay."
"No, it's not that, he's too old and there would be too much risk."

Our discussion continued and it appears that Early Onset Alzheimer's Disease (EOAD) are prime candidates for his operation. Because they are younger their chances are better in handling the stresses of surgery.

The COST? Dr. Goldsmith explained that the cost was incorrectly reported and that it is about $60,000 to $70,000 for the four-hour operation. Since it is considered elective surgery insurance won't pay. However, when one considers the chance of a lifetime--to take a TERMINAL disease and give back one's LIFE, isn't this be a small price to pay? I believe, if I heard him correctly, Dr. Goldsmith now has a benefactor who provides funding for Alzheimer's patients to undergo this procedure.

Regardless, Dr. Goldsmith gives us hope in fighting this disease.

Genuinely Yours,
Brenda Avadian, M.A.
The Caregiver's Voice
"Where's my shoes?" My Father's Walk Through Alzheimer's and
soon-to-be-released, Caregiving 101 and The JOY of Alzheimer's: Caregivers share their JOYFUL experiences caring for their loved ones.

There is an excellent article about end of life care in this months issue of Modern Maturity, presented by AARP. It is also available on their web site..... AARP | Modern Maturity | Sept-Oct'00 | Start The Conversation

It's all interesting reading.

From PHOTOLJT

Hi Folks!

I have another one of my online friends that had a very peculiar situation happen. Even though she wants folks to learn from it, she has asked for me to relay it to you all. So here goes:

My friend took her Mom to the doctor as she wasn't feeling well. As the doctor was examining Mom, the doctor noticed a tape recorder and asked if she was recording the conversation. What my friend intended was to record the conversation so that when Mom debated things the doctor would say, the tape could be brought out and played for positive re-enforcement with the doctor's voice. Imagine the friend's embarrassment at having the doctor discover the recorder. To top that off, the doctor stated she couldn't take care of Mom anymore as it broke the confidence that they had. My friend begged and pleaded with the doctor not to take that position. The doctor was so upset that she stated she had to talk with the review board and would let her know in 30 days. Well, needless to say, the letter came stating she could no longer care for Mom.

As in the first situation I brought to you all, this has turned out well. I know it will seem to you all that the doctor was extremely over reacting, uncaring, and not very nice. However, it is extremely illegal to record someone without their knowledge; so I do understand the doctor's upset by that. But that is about as far as my understanding goes. This should have shown the doctor just how desperate we caregivers get when we are trying to assist our loved ones cope with all of the upset. And it shows me just how much all of us want to do right by our loved one; so much so that we will attempt to go to any length for what seems to be a feasible solution. What it additionally shows me is that we all get pulled to the max, and when we get so frazzled, we reach for "any port in the storm." The best word of advise here is, one - not to record conversations; and two - sound things out with friends before putting your plan into action. When the friend thought about it, she realized her Mom probably would not have recognized the doctor's voice anyway.

As I said this has a good ending. The friend has found a new doctor for Mom and his mother is afflicted as well. So there will be much more caregiver understanding. I guess everything happens for a reason! Take care and hugs!

Love Always,
Linda

We hope everyone gets some sort of a break to rest during this long Labor Day Weekend. Be safe and Take care.

Hugs and Peace,
Karen and Jamie