Things have been pretty hectic here at the home place lately. There have been numerous doctor visits, a hospital ER visit, an 18th birthday to celebrate, good news to receive, and bad news to receive.
During all of this I've been wondering, "Have I bitten off more than I can chew?" in adding my Mother and my Grandmother to my caregiving activities. I've been feeling really stressed and the Big G word, guilt, has been hitting me hard. I've felt bad that I haven't kept my house up to par, I've felt that I'm neglecting Nanny when at Mama's house and then I feel I'm neglecting Mama and Grandmother when I'm at home. I won't even go into how bad I feel about my husband and my son.
Then I had a smack upside my head!! Jamie, you aren't taking care of yourself are you? I've been running around like a chicken with it's head cut off doing for everyone else and haven't done anything for ME. I've been trying to handle everything by myself and not asking for help.
Now I ask myself, "What is the first and foremost rule of Caregiving"? It is that the Caregiver MUST take care of themselves. For the last few days after my awakening I've been taking a 10 minute break here and there during the day and doing what I want to do for me in the evenings, even if it's just to veg out watching TV. I'm also learning to ask for help from my family.
I think that's the hardest part of all. I've always kind of been a "supermom" and it's hard to ask your children to help you do something. I thought I had torn that big "S" off my bra but obviously it was still stuck on by a thread.
I'm proud to say that my kids have pulled through for me. I just need to realize that I need to let them know what I need done. I have to realize that they have their own lives and don't always recognize what I need. I cannot be ashamed or embarassed to ask.
I can now say that for the moment everything is under better control. My house is still cluttered and dusty but the wash is done and the kitchen is clean. That's the jobs for next week. I'm not getting upset thinking I'm neglecting anyone because I now know I'm not. I'm still trying to get a routine going but that will work out in time.
So now those of you who feel overwhelmed, don't think you are alone!! We all go through it and we all will survive it. Life happens.
As we stated in the last newsletter there have been some virus problems. We need to tell you that if you receive ANY email from those of us at The Ribbon that has an attachment DO NOT OPEN IT. Just DELETE it.
What we have found out is that if someone has this virus and one of our names is in their address book then that person's virus can send an email out to someone else in the address book and have it look like we sent it.
We DO NOT send out anything to our readers with an attachment unless YOU have requested it that way.
We hope there will no longer be any problems with this worm.
The Ribbon Staff
Alzheimer's Support on MSN
of the site have formed an "Awareness Mission
Group" whose purpose is to work to heighten
awareness of care giving issues and dementia. Members of the site
feel that in-depth presentations of the cold hard facts of the
impacts of dementias on caregivers are in order. The personal
demands on caregivers, disruptions of normal lives and resulting
financial strains can be disastrous.
The Caregiving Years
by Denise M. Brown
When you expect a child, the community (your family, friends, co-workers) rally around you and your spouse. When you expect your first child, you receive gifts, well wishes and the encouragement that you are entering a wonderful, albeit challenging, chapter in your life. As you prepare to welcome your child, you feel pride at the thought of your role as parent: How you will shape the mind of a youngster, impacting him or her with your wisdom, insights and knowledge.
Now think about a similar life experience, just one on the other end of the spectrum. An aging relative, a spouse, a parent, a grandparent, needs your help. And, you want to help--you believe in making the most of the years you have left together. But, when you tell your friends, your colleagues, even other family members, the comments you may hear are a far cry from well-wishes. "I could never do that! Why do you?" Or, the more common response: "Why don't you just put your mother (or your wife, or your grandfather) in a nursing home? That way you won't be so stressed out."
With support like that, no wonder you might find yourself fighting self-doubts during your caregiving journey, asking yourself, "Why me? Why am I the one to do this?" These self-doubts can erode your ability to handle your caregiving responsibilities effectively and efficiently. Even worse, these self-doubts cloud your ability to understand how important this caregiving journey is--to your care recipient, your family, yourself.
Which is why I've developed The Caregiving Years: Six Stages To A Meaningful Experience. Much like books for expecting parents, The Caregiving Years describes what to expect throughout the journey. By having information about your role as caregiver--you understand what information to gather and the actions to take--you can spend more time making this experience meaningful, for your care recipient, your family, yourself.
The Caregiving Years is separated into six stages, each stage defined by the number of years spent as a caregiver. But these definitions were created to use only as a guide. Your care recipient's illness and diagnosis will determine how quickly or slowly you pass through the stages. While the length of time spent in each stage may differ for each caregiver, the emotions and experiences felt will remain constant.
I welcome your feedback to this concept. And, I'd love to know what insights, understandings and meanings you've garnered about your journey because of The Caregiving Years.
Note: I have provided The Caregiving Years to be used strictly as a guide. All situations vary. I encourage you to always consult your health care professionals to discuss your individual situation and the best course of action for you and your care recipient.
Printed by permission of: Denise M. Brown
Who are you?
You have a growing concern that within the next 12 to 18 months or so, your aging relative will need more and more of your assistance and time. You're concerned because of your relative's age, past and present medical condition, and current living condition.
Your keyword: Ask.
Ask questions of your care recipient. Ask questions of health care professionals. Ask questions of lawyers and financial planners.
You expect to become a caregiver; this is your time to prepare. You should research options, gather information, and provide the opportunity for your care recipient to share his or her feelings and values. This is also your time to concentrate on taking care of yourself--keeping up with family and friends, enjoying your hobbies and interests, pursing your career goals, taking trips you've always dreamed of.
Although an immediate crisis may not face you, the threat of one seems to hang in the horizon. Rather than closing your eyes to avoid seeing that horizon, you can take some proactive steps now that will make your future caregiving days easier.
As an "expectant caregiver", what can you do?
1. Consult with a good lawyer familiar with eldercare issues.
Find out about durable powers of attorney for health care and living wills; start the process to ensure that the necessary legal papers are in order.
2. Determine financial situations.
Knowing the financial status can help determine future health care choices. Determine monthly income from pensions and social security; learn about annuities, stock investments and bank accounts.
3. Investigate community health care options.
In addition, consider your aging relative's current living condition. Will your aging relative be able to reside safely in her home if she uses a wheelchair, becomes bedbound? What changes can you make today that will prevent future barriers to providing care in her home? Or, are the necessary changes almost an impossibility? If so, what other options do you have: your home, an assisted living facility, a retirement community?
4. Begin discussions with your aging relative about his or her wishes.
Asking questions now about your relative's care preferences will help you provide the care your relative wants. Where does your relative want to die? At home? At a care facility? What type of funeral would your relative want? Does your relative have a preference as to whom in the family provides care? How does your relative feel about end-of-life care decisions?
Although you may not be able to meet all your relative's wishes, you can begin to plan now to meet at least the most important.
5. Determine the current health care providers.
Who are the physicians, what is the diagnosis? In addition, learn about medications and why the medications have been prescribed.
6. Concentrate on the reality of the situations.
Keep a realistic view of their situations: What's the worst that could happen? What's the best possible outcome? Then, determine what options are available for each of these outcomes.
7. Start a journal; chronicle your feelings, your concerns and your actions.
You may be surprised at your feelings of loss. Your preparation of the future allows you to see what your care recipient--and you--might lose. You both will experience changes in your relationship, your schedules, your amount of freedom. Write down your thoughts about the potential losses--and how you might be able to hang on to them, through minor adjustments and changes, for a little longer.
In the next few issues of The Ribbon we will print the rest of the stages.
Loved One Show Signs of Alzheimer's Disease?
** The Disappearing Mind **
The Disappearing Mind
In Passing: Those We Must Remember
is with great sadness that i write to share iwth you that I
received an email from Clara or Pacoon that her father passed
away June the 18th. She states she is glad that "he is at
rest and walking with our Creator and Mom."
must apologize on this one folks; this email got past me! In
the first part of June I received an email from Tess or KuuipoTes
telling me her mother had passed away. Tess has only been in a
couple of times to visit with us; however, she has been part of
the AOL chats recently and also AOL chats a few years ago. Tess
is requesting we keep her and her family in our thoughts and
New Clinical Trial
Healthy Aging and Memory Study
This trial record can be viewed by clicking on the link at [http://www.alzheimers.org/trials/newtrials.html].
DRUG(S) (GENERIC NAME [BRAND NAME]):
Birmingham, AL 35294-1150: University of Alabama, Birmingham: Jo Ann Parrish, LPN: Tel: 205-934-6223: firstname.lastname@example.org
Sun City, AZ 85351: Sun Health Research Institute: Suhair Stipho, MB, CH B: Tel: 623-875-6516: email@example.com
Sacramento, CA: University of California, Davis: Bobbi Henk, RN, MSN: Tel: 916-734-6750: firstname.lastname@example.org
Palo Alto, CA 94304: Stanford/VA Aging Clinical Research Center: Heather Fiedler-Greene, MA: Tel: 650-852-3234: email@example.com
Irvine, CA 92697-4285: University of California, Irvine: Catherine McAdams-Ortiz, RN, MSN: Tel: 949-824-8726: firstname.lastname@example.org
Los Angeles, CA 90095-1769: University of California, Los Angeles: Susan O'Connor, RNC: Not Yet Recruiting: -
LaJolla, CA 92037: University of California, San Diego: Mary Pay, RN, CNP: Tel: 858-622-5800 Fax: 858-622-1017: email@example.com
Los Angeles, CA 90033-1039: University of Southern California: Nansi A. Taggart, RN, BSN, MA: Not Yet Recruiting: -
New Haven, CT 06510: Yale University School of Medicine: Shannon Savarese: Tel: 203-764-8100: firstname.lastname@example.org
Washington, DC 20007: Georgetown University: Carolyn Ward, MSPH: Tel: 202-784-6671 Fax: 202-784-4332: email@example.com
Boca Raton, FL: Baumel-Eisner Neuromedical Institute: Fannie Levinson: Tel: 800-755-1999: firstname.lastname@example.org
Fort Lauderdale, FL 33321: Baumel-Eisner Neuromedical Institute: Fannie Levinson: Tel: 800-755-1999: email@example.com
Miami Beach, FL 33154: Baumel-Eisner Neuromedical Institute: Fannie Levinson: Tel: 800-755-1999: firstname.lastname@example.org
Tampa, FL: University of South Florida: Dolina Bois, MA: Tel: 813-974-4355: email@example.com
Jacksonville, FL: Mayo Clinic, Jacksonville: Francine Parfitt, MSH, CCRC: Not Yet Recruiting: -
Miami Beach, Fl 33140: Wien Center (Miami Beach): Peggy D. Roberts: Tel: 305-674-2424: firstname.lastname@example.org
Atlanta, GA: Emory University: Lisa Kilpatrick, BS, MS: Tel: 404-728-6590: email@example.com
Chicago, Il: Northwestern University: Laura Herzog, MA: Tel: 312-695-2343: firstname.lastname@example.org
Chicago, Il: Rush Alzheimer's Disease Center: Rose Marie Ferraro, LVN, AS: Tel: 312-942-8264: email@example.com
Indianapolis, IN 46202: Indiana University Alzheimer's Center: Nicki Coleman RN: Tel: 317-274-1351: firstname.lastname@example.org
Lexington, KY: University of Kentucky: Kelly Woodall, RN: Tel: 859-257-5562: email@example.com
Baltimore, MD: Johns Hopkins University: Cynthia Munro, PhD: Tel: 410-614-7785: firstname.lastname@example.org
Boston, MA 02115: Brigham and Women's Hospital: Kara Campobasso, MA, PA: Tel: 617-732-7992: email@example.com
Boston, MA: Boston University School of Medicine: Jeri Jewett: Tel: 617-638-5430: firstname.lastname@example.org
Ann Arbor, MI: Michigan Alzheimer's Disease Research Center: Linda V. Nyquist, PhD: Tel: 734-936-6078: email@example.com
Rochester, MN: Mayo Alzheimer's Disease Center: Joan McCormick, BSN, RN: Tel: 507-284-7906: firstname.lastname@example.org
St Louis, MO: Washington University: Pamela Millsap, BSN: Tel: 314-286-2363: email@example.com
Las Vegas, NV: University of Nevada, Las Vegas: Marie L, Stallbaum, BSN: Tel: 702-671-5021: firstname.lastname@example.org
New York, NY: Columbia University: Ruth Tejeda, MD: Tel: 212-305-5805: email@example.com
New York, NY: Mt. Sinai Medical Center: Adriana DiMatteo, MA: Tel: 212-241-0438: firstname.lastname@example.org
New York, NY: New York University School of Medicine: Maria Vlassopoulos: Tel: 212-263-5708: maria.vlassopoulos@.med.nyu.edu
Rochester, NY: University of Rochester: Colleen McCallum, MSW: Tel: 716-760-6574: email@example.com
Cleveland, OH: University Hospitals of Cleveland: Nancy A. Slocum, RN, MPH: Tel: 216-844-6328: firstname.lastname@example.org
Portland, OR: Oregon Health Sciences University: Georgene Siemsen, MS, RN: Not Yet Recruiting: -
Philadelphia, PA: University of Pennsylvania: Kris Gravanda, BA: Tel: 215-349-5903: email@example.com
Pittsburgh, PA: University of Pittsburgh: Patrick Ketchel, MEd: Tel: 412-692-2721: firstname.lastname@example.org
Pawtucket, RI: Memorial Hospital of Rhode Island: Meg Lannon, RN, MS: Tel: 401-729-3750: email@example.com
North Charleston, SC 29406: Medical University of South Carolina: Effie Hatchett, RNC: Tel: 843-740-1592: firstname.lastname@example.org
Dallas, TX: University of Texas Southwestern Medical Center: Robbin Peck, AD: Tel: 214-648-7457: email@example.com
The Gathering Place
I want to take this brief moment to apologize for the recent problems which you all have been encountering while at The Gathering Place. Our chat server has been doing some upgrades and numerous problems have been encountered. We are working with the service provider to get these things fixed up and do appreciate your patience during this time.
From CareVoice@aol.com (Brenda Avadian)