Treatment and Support for Families Affected by Alzheimer's and other Cognitive Impairments |
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May-June 2016
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Vol 7, Issue 3
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News
A newsletter for caregivers of loved ones with memory loss
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My 68-year-old wife was just diagnosed with Alzheimer's Disease. I know we need to inform our family, but what about telling others? Shouldn't we try to keep this a secret for as long as possible to preserve her dignity? |
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Your question brings up several issues: confidentiality, respect, honesty, support, and isolation are the ones that immediately come to mind. Let's begin with confidentiality.
Different families have different ideas about how much of their private life they want to share with the outside world. Your family is certainly entitled to as much privacy as you think is appropriate, but in this case, perhaps you should ask yourself why it's necessary to keep this information to yourselves? Why are you reluctant for others to know about this diagnosis? If your wife had been diagnosed with cancer or diabetes or rheumatoid arthritis, would you keep that quiet too? Or would you want to reach out, to open your heart to your community and give them the opportunity to surround you and your wife with love and support?
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 Living with Alzheimer's can be a long and difficult journey; the average course lasts about eight years. The last thing you want at this time is to expend your energies trying to cover it up or keep it a secret from those who can help. You are going to want to maintain as much of your life as you can, and in order to do that, you are going to need the involvement of everyone around you. If they don't know about it, they can't help. Ask yourself, if one of my friends or family was diagnosed with Alzheimer's Disease, would I want them to let me know or keep me in the dark? Having a family conference to share the news is the first step towards going public. Most families will present a united front to offer help and support, but sometimes there's one or two who, for reasons of their own, cannot or will not accept the diagnosis. Try to understand that they are grieving - after all, you've had more time to get used to this than they have. Continue to keep them informed, just as you do with the rest of the family. Ultimately they may come around; if they don't, let it go - you cannot force them. |
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Sharing the news with the rest of the community doesn't require that you make a speech or put out a memo. Simply telling a few close friends, a clergy member, a neighbor...whoever you are comfortable with, is enough. Emphasize that you want to present it in a positive light, such as "Jane has received a diagnosis of Alzheimer's Disease. Our family is being very open about it, and we want to maintain as much of our normal life as possible. We will be happy to answer any questions, and ask that our friends continue to be a part of our lives." The message will spread.
There's a good chance that your family and friends have already noticed some changes in your wife. There will be more and more of them as the disease progresses. Informing the people around you of the reason for these changes, presenting an honest and straightforward attitude about Alzheimer's Disease, and asking for their help as your wife's needs increase will go a long way towards dispelling any perceived stigma or embarrassment about it.
When you think of a diagnosis of Alzheimer's in these terms, you realize that preserving your wife's dignity lies not in hiding the disease, but in facing it with grace and compassion.
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Misremembering, Confabulation,
and Not Taking It Personally |
"Millie, I'm not going to go visit Edith anymore at the assisted living place she moved to. The last time I went there, she accused me of stealing her purse the moment I walked in! We've been friends for 50 years, she ought to know I wouldn't do such a thing. It really hurt my feelings, and I'm not going to visit her again unless she apologizes."
"But Doris, you know she has Alzheimer's. She didn't mean it."
"I don't care, that's not an excuse to be hateful! I've tried to be very patient with her since she got Alzheimer's. I haven't gotten upset when she didn't remember my name or didn't remember all the things we've done together over the years, or when she doesn't remember that I just came to see her the day before, or when she doesn't even know where she lives. But when she accuses me of STEALING from her? That's completely ridiculous, she knows better than that!"
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"Well, she USED to know better than that, but as you said, she doesn't remember who you are half the time. I'm sure she was just upset because she couldn't find her purse. Do you think someone else may have stolen it?"
"Of course not! She's just forgotten where she put it, that's all! She loses things all the time, that's what people with Alzheimer's do - but she didn't have to blame ME. I kept telling her it couldn't have been me, I hadn't even been there for several days, and besides, why would I steal her purse from her? I even tried to help her find it, but she'd just say over and over, "you stole it, you stole it" and wouldn't listen to reason. I finally just left. I can't believe she could be so mean to me - her dearest friend for 50 years. Well, I never thought our friendship would end like this."
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It's awful when a person we love accuses us of something that just isn't true. Most of us understand and even expect a person with Alzheimer's to be forgetful or confused, but when they say mean or ugly things to us, it's hard not to take it personally. Doris had been tolerant of Edith's memory lapses, but her patience ended when she felt she had been unjustly maligned. It's human nature - nobody wants to be blamed for something they didn't do, whether or not dementia is in the picture.
But the fact is, dementia IS the culprit here...and dementia changes everything. Without dementia, Edith wouldn't have forgotten what she did with her purse. Without dementia, she wouldn't have accused her dearest friend of having taken it. Without dementia, she would have known better.
Is there a way to salvage this friendship? Yes there is, if Doris can set aside her personal feelings long enough to learn why her friend Edith would act the way she did.
What do you think Doris could have done?
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(Stay tuned for the July-August issue of CNN
to learn how Doris can heal her feelings as well as her friendship)
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| Recommended Online Reading |
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"Repetitive Questions & How to Communicate"
from the Alzheimer's Reading Room
"Using Improv to Improve Life with Alzheimer's"
a TedMed Talk with Black Mountain's Karen Stobbe
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UPCOMING EVENTS
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Free MemoryCare Workshop
DRIVING and AGING - WHEN IS IT TIME TO STOP?
presentations by
Lisa Verges, MD
MemoryCare Physician
and
Jan Stephanides, OTR-L, CDI
CarePartners Driver Evaluation Program
Friday, July 22, 9:30-11:30
First Baptist Church Crosswalk Building
55 Buncombe Street
Hendersonville, NC
Hosted by the Memory Cafe of Hendersonville
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ONGOING
PROGRAMS
Open to the Public
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MEMORYCAREGIVERS NETWORK
SUPPORT & EDUCATION GROUPS
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FLETCHER GROUP
First Tuesdays, 1:00-3:00 p.m.
Fletcher 7th Day Adventist Church
Howard Gap Road and Naples Road, Fletcher, N.C.
(just past Park Ridge Hospital)
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NEW HOPE GROUP
Third Tuesdays, 1:00-3:00 p.m.
New Hope Presbyterian Church
3070 Sweeten Creek Road, Asheville, N.C. 28803
(across from Givens Estates)
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WEAVERVILLE GROUP
Fourth Tuesdays, 1:00-3:00 p.m.
Weaverville First Baptist Church
63 N. Main, Weaverville, NC 28787
(North Buncombe County)
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Network meetings are open to the public.
The Network relies on charitable support to keep its program going.
To make a donation, contact Chad Conaty, Director of Development & Outreach,
at conaty@memorycare.org,
For more information about the MemoryCaregivers Network, contact:
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Mary Donnelly
828.230.4143
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Pat Hilgendorf
828.301.0740
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"CAREGIVER COLLEGE"
MemoryCare's ongoing educational series for caregivers
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A series of six lectures will be provided for anyone caring for a person with a memory disorder. Sessions are designed to improve caregiver understanding of different aspects of dementia care. Related presentation materials will be provided.
Course Content:
What Is Dementia?
Transitioning from Independence to Interdependence
Functional and Behavioral Changes of Dementia
Dementia Treatment Options & Risk Reduction
Caring for the Caregiver
Dementia and Legal Planning Issues
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The next Asheville session will be Fall 2016
For more information, contact MemoryCare
828.771.2219 or office@memorycare.org
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SCROLL DOWN
for MORE COMMUNITY EVENTS!
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Caregiver Network News
is made possible by the charitable support of donors.
The MemoryCaregivers Network is an auxiliary program of
MemoryCare's mission is three-fold:
To provide specialized medical care to older adults with cognitive impairment;
to support caregivers with education, counseling,and improved access to services; and to provide community education.
MemoryCare relies on charitable donations for operations.
Please consider MemoryCare in your estate planning.
Click this link to visit our website: www.MemoryCare.org
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Do you need a program for a group event?
Public education is not only a part of the President's National Plan to Address Alzheimer's Disease, it's a part of MemoryCare's mission statement.
The MemoryCaregivers Network staff can provide speakers on a variety of subjects, including Recognizing Early Warning Signs of Memory Loss, Facts and Fiction about Dementia, Better Communication Techniques, and more.
or Chad Conaty, Director of Development & Outreach, at conaty@memorycare.org
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OTHER COMMUNITY PROGRAMS & EVENTS
(The following programs are not part of MemoryCare but help our community by serving those impacted by memory impairment.)
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Memory Loss Caregivers of East Buncombe
An education & support group for caregivers
sponsored by the Highland Farms Residents' Corporation
Meets every second Tuesday
9:30-11:30 a.m.
Lounge Room 3 (lower level), J-K entrance of Brookside Building
Highland Farms Retirement Community, Black Mountain, NC
Free and Open to the Public
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For more information, contact:
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Mary Donnelly
828.230.4143
marydd60@charter.net
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Pat Hilgendorf
828.301.0740
patricia.hilgendorf@gmail.com
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Henderson County Caregiver Support Group
Two meetings every third Tuesday
1:00 p.m. AND 3:30 p.m.
First United Methodist Church
204 6th Ave W, Hendersonville, NC 28739
For more information, contact Lisa Kauffman at 828.696.9799
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Support Groups for Persons Living With Memory Loss
Initial screening required for all early-stage groups.
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The New Hope Group
1:00-2:30 p.m. on the third Tuesday of each month
(meets concurrently with the MemoryCaregivers Network New Hope Group above)
Contact Mel Kelley, 828.301.0529 or avant_garden@msn.com
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The Biltmore Group
1:00-2:30 p.m. on the second Thursday of each month
Biltmore Methodist Church
376 Hendersonville Road Asheville, 28803 (Exit 50 off I-40)
Contact Mel Kelley, 828.301.0529 or avant_garden@msn.com
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The Highland Farms Group
9:30-11:30 a.m. on the second AND fourth Tuesdays of each month
(2nd Tuesday group meets concurrently with the Memory Loss Caregivers of East Buncombe above)
Contact Mel Kelley, 828.301.0529 or avant_garden@msn.com
The Hendersonville Group
1:30-3:30 on the second and fourth Tuesdays of each month
Mud Creek Baptist Church
Contact Patty Williams at 828.692.1262 or patty@mudcreekchurch.org
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Memory Cafés
A Social Gathering For Those with Memory Loss and their Friends & Families
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First Baptist Church, 5 Oak Street, Asheville
Third Thursdays, 1-3pm
Calvary Episcopal Church, 2940 Hendersonville Road, Fletcher
Third Saturdays 2-4pm
Sylva First Baptist Church Fellowship Center, 669 W. Main St, Sylva
(collaboration with First Methodist, First Presbyterian, & St. John's Episcopal)
Second Thursdays 10am-12pm
828-452-2500 meltonann@att.net
Hendersonville First Baptist Church, Crosswalk Bldg, 577 Buncombe St, Hendersonville
Second Mondays, 1-3pm
828-388-1421 vaelwell@yahoo.com
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Come for Fun, Relaxation, and Socializing in a Café-like Setting!
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EDUCATIONAL OPPORTUNITY
Become a Trainer in
Teepa Snow's PositiveApproach™
to Care Philosophy
2-Day Trainer Certification in Asheville
September 1 & 2
to be held at CarePartners, 105B Fairview Rd, Asheville
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Good things happen
when you
SMILE!
AmazonSmile.com is a website operated by Amazon with the same products, prices, and shopping features as Amazon.com.
So what's the difference?
The difference is that when you shop on AmazonSmile, the AmazonSmile Foundation will donate 0.5% of the purchase price of eligible products to the charitable organization of your choice!
SO....when you purchase goods on Amazon.com,
MemoryCare is eligible to receive a percentage of the proceeds on goods purchased via the Amazon Smile Foundation!
(Please share this with your friends and family, too!)
Thank you!
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"We never think how great a gift it is to think."
-unknown
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Caregiver Network News is written and edited by Mary Donnelly.
Contact network@memorycare.org for more information.
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