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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!!!!!!!!!!
Using Family Meetings to
Resolve Eldercare Issues
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.
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:
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
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.
Top Alzheimer's/Caregiving Sites,
brought to you by A Year to Remember
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........
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?
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
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:
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
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
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?"
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.
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.
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,