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FALL VOLUME 21, ISSUE 4
Anticipatory Grief: How to Cope With the “Living Death” of Alzheimer’s By Paula Spencer Scott, Caring.com contributing editor
Practical Support for Coping with Dementia
For many caretakers, daily care isn’t the worst part of dealing with Alzheimer’s or other dementias. Grief is. What is anticipatory grief?
Anticipatory grief is the emotional pain of losing a loved one, felt in advance of the person’s death. It’s a common phenomenon among those who care for the terminally ill.
It may be experienced at any time by anyone connected to someone with Alzheimer’s, but it’s especially common at the middle and late stages of the disease. Why Alzheimer’s caregivers are vulnerable to anticipatory grief
Good-byes are always painful, and Alzheimer’s is the ultimate “long good-bye.” Anticipatory grief is rampant, and perhaps inevitable, among Alzheimer’s caregivers because of the slow, progressive, and incurable nature of the disease. University of Indianapolis researchers asked more than 400 caregivers the open-ended question, “What would you say is the biggest barrier you have faced as a caregiver?” The majority -- more than 80 percent -- referred to the loss of the person they used to know.
The friends and family of someone with dementia experience two diffi cult psychological states at once: • Anticipatory grief, or coping
with the very real feelings of loss for someone who is still alive • Ambiguous loss, or interacting
with someone who’s not fully present socially or psychologically
That’s a tough mix. Little wonder that more than a quarter of all dementia caregivers suffer from depression. They’re in mourning even as they’re still doing the hard work of taking care of someone with a diffi cult disease. Depressed caregivers, more than other depressed people, tend to display symptoms that center on sadness, lack of hope, and guilt. What you can do when anticipatory grief strikes • Know that your feelings are normal.
It can help simply to know that anticipatory grief exists. Just because the person you’re caring for still lives doesn’t mean you don’t get to show dark emotions. There’s no need to feel guilty for experiencing these diffi cult feelings. Nor should you hold them in. • Understand that it’s “real” grief.
A 2001 study in The Gerontologist deemed anticipatory grief equivalent in intensity and breadth to the response to death. The odd silver lining: anticipatory grief prepares us for the end. It’s a long, slow, painful warm-up, but it’s a warm-up, nonetheless. • Don’t try to put a gloss on dementia
care. Many caregivers wax poetic about those unexpected “I love yous” or sudden bursts of clarity and gratitude. They’re fulfi lling and should be embraced. But the rest of the time -- well, there’s the rest of the time. Don’t beat yourself up if you struggle with some aspects of caregiving • Be nice to yourself. Grief (anticipatory or otherwise) puts you at
For more information about the Alvin A. Dubin Alzheimer’s Resource Center, contact us at (239) 437-3007 or visit our website at
www.alzheimersswfl.orgContinued on page 4
by Bernice “Bea ” VanDeKerkho
Caregiver Transitions Support Group A support group designed specifically for family members who are facing the challenge of caregiver identity change Presented by Dubin Alzheimer’s Resource Center Group meetings are held on the Third Tuesday of each month 10:00 a.m. – 11:00 a.m. at the Dubin Alzheimer’s Resource Center 12468 Brantley Commons Court, Fort Myers
This group offers an opportunity for family members to speak candidly about their experience and feelings. Discussion topics include, but are not limited to: Caregiver identity; Navigating dual roles; What to do after placement; Anticipatory grief; and How to survive the loss of a loved one. Meetings are facilitated by a social worker and offered free of charge.
For more information call (239) 437-3007.
Board of Trustees Al O’Donnell, President O’Donnell Landscapes Mitchell L. Cordova, PhD, Vice President Florida Gulf Coast University Chris Holtrop, Secretary Syndicated Capital Carol Osterhout, Treasurer FineMark National Bank & Trust Kathy Shimp, Past President Community Volunteer Britton Swank, Member at Large Prather & Swank, P.A. Rev. Stu Austin New Hope Presbyterian Church Stan Grigiski Medical Claim Service Keith Kyle Circuit Court Judge Mabel Lopez, PhD Mind and Brain Care Jim Nolte, CFP® - Financial Advisor Wells Fargo Advisors, LLC Michael Raab, MD Community Volunteer Jamie Seneca Nurse On Call
Advisory Council Scott Anstadt, PhD, DCSW, LCSW Florida Gulf Coast University Debbie Beavers Community Volunteer Dolores Bertolini Community Volunteer Teresa Frank-Fahrner Lee Memorial/SHARE Club Marcia Hamilton Keiser University Jo Anne Kowalski, RN, EdD Nurse Practitioner Services Tracy Lima Trusted Financial Services Kathy Monroe Community Volunteer Dawn Moore, Chair Lee Memorial Health System Pam Pence Klaas, Vice Chair Community Volunteer Lowell Schoenfeld Green, Schoenfeld & Kyle Halcyon St. Hill, EdD, MS, MT Florida Gulf Coast University Jo Stecher, PhD, RN, CCTC Florida Gulf Coast University
Emeriti Board Bill Beckwith, PhD Memory Management John Belisle BB&T - Oswald Trippe and Company Bill Enslen Community Volunteer Peg Gray-Vickrey Texas A&M - Central Texas Patricia Hessel Retired Certified Public Accountant Douglas Newland, MD Neurologist Julie Osterhout Osterhout & McKinney Nancy Silvers, RN C Retired Registered Nurse Nancy Zant HealthPark Care Center Archie B. Hayward, Jr. Lee County Court Judge Lou Pontius Community Volunteer
Alvin A. Dubin Center Staff Jan Kerlin, Executive Director Melanie Jackson, Exec Asst/Coord of Vols Mary Freyre, RN, Health Ed Specialist Karen Jellerson, LCSW, Social Worker Jessica MacDonald, LCSW, Social Worker
Mark Your Calendar
Memory Screenings - The First Step Toward Addressing Memory Concerns Memory screenings will be offered at the Bonita Springs United Way House 26820 Old 41 Road, Bonita Springs FL October 26th from 12:30 p.m. - 3:30 p.m. Appointments are required
If you or someone you know has concerns about memory, please schedule a FREE memory screening. Screenings take about 15 minutes.
Call (239) 437-3007 to schedule an appointment. (Appointments may also be scheduled for different dates and times.)
New PATH Program Presented by the Dubin Alzheimer’s Resource Center 12468 Brantley Commons Ct, Fort Myers Call for details, as eligibility interview is required (239) 437-3007
The New PATH program, designed especially for individuals in the early stages of Al- zheimer’s disease or a related dementia and their spouses/primary caregivers, includes both a support group for individuals with early-stage dementia and a concurrent support group for their spouses/caregivers. Participants (and their caregivers) are interviewed prior to enrollment to determine suit- ability for the group and to obtain background information. Call (239) 437-3007 for details.
• Personal Bill Pay Services • Medicare Specialists • Claim Filing Experts
923 DEL PRADO BLVD., SUITE 107 • CAPE CORAL, FL 33990 • (239) 772-2030
Medical Claim Service
We give peace of mind.
MCS PERSONAL BILL PAY & CLAIMS SPECIALISTS We give peace of mind.
Licensed, Bonded & Insured
Save the Date! November 12th
5:30 p.m. - 7:30 p.m.
FineMark Bank and Trust 12681 Creekside Lane,
Grand Sponsor Mind and Brain Care
RSVP to (239) 437-3007 by November 9th
C a r e g i v e r Social
Join us for a festive afternoon of fellowship
December 10, 2015 2:00 - 4:00 p.m.
Westminster Presbyterian Church
Refreshments and Entertainment Provided
RSVP by December 1st
to (239) 437-3007
Sponsored by Fox Electronics
January 28, 2016
Centennial Park Fort Myers
Eighteenth Annual A Light to
Families and friends may purchase a luminary in celebration (honoring or remembering) of a loved one with AD or a related memory disorder. These luminaries will border the sidewalks of centennial park by the fountain at sunset with a special lighting ceremony.
To purchase a luminary in celebration of your loved one, please call
A COPY OF THE OFFICIAL REGISTRATION & FINANCIAL INFORMATION MAY BE OBTAINED FROM THE DIVISION OF CONSUMER SERVICES BY CALLING TOLL- FREE WITHIN THE STATE. REGISTRATION DOES NOT IMPLY ENDORSEMENT, APPROVAL, OR RECOMMENDATION BY THE STATE. THE TOLL-FREE NUMBER IS: 1-800-435-7352. FL SOLICITATION OF CONTRIBUTIONS REGISTRATION #SC- 06629. 100% OF EACH CONTRIBUTION IS RECEIVED BY THE ALVIN A. DUBIN ALZHEIMER’S RESOURCE CENTER, INC.
Grand Sponsor Mind and Brain Care
by H enry
An Alvin A. Dubin Alzheimer’s Resource Center
REINA SCHLAGER, CPA/PFS* RHU Personal Fina