Memory Matters
Volume 14 • Issue 4
Heart of America Chapter
Inside Features
Walk to End Alzheimer’s ........... FC – 2
Health Care Decisions Legislation....... 3
Brain Gymnastics................................ 3
Grief on the Alzheimer’s Journey........ 4
Blondes vs. Brunettes.......................... 5
Memory Day...................................... 6
Advocacy App for Smart Phones......... 6
Glen Campbell’s Documentary........... 6
Music and Memory Wish List............. 6
Calendar of Events.............................. 7
Year-End Charitable Gift.... Back Cover
Stay in touch with us!
Many reasons to walk. One goal.
THANK YOU
for helping us step closer to our goal
of a world without Alzheimer’s.
Walk to End Alzheimer’s season begins at a different time for everyone
involved. There are individuals and teams who start the day after the Walk on
the next year’s fundraising efforts, and others who join the bandwagon just
weeks before the Walk. Regardless, the culmination of all efforts is a beautiful
thing when a community gathers together to walk in honor of or in memory
of those with Alzheimer’s.
Whether it is the building of awareness for a disease expected to hit
epidemic proportions or the raising of vital funds to fuel Alzheimer’s care,
support and research, Walk to End Alzheimer’s is an event like no other. In
the 5 community Walks of the Heart of America Chapter, more than 6,000
people took steps to make a difference in the lives of those with Alzheimer’s.
The combined efforts of these 6,000 individuals, Walk sponsors, and donors
raised more than $600,000 for the fight against Alzheimer’s.
The Heart of America Chapter is extremely proud of the funds raised by
individual walkers and teams. Every walker, every team, every dollar counts.
We post upcoming events, caregiving
tips, news you can use and important
information about Alzheimer’s
awareness. Like our page at
facebook.com/alzkansascity
ONLINE NEWSLETTER
You can access this issue or past
newsletter issues by logging on to
www.alz.org/kansascity.
From the home page, click on the
MEMORY MATTERS NEWSLETTER
ARCHIVE link.
Or, if you prefer the
newsletter in print
and are not currently
a subscriber, call
913.831.3888.
Our special thanks to the 2014 top
Walk to End Alzheimer’s fundraisers:
Top Team Fundraisers:
William P. Biggins Sr.
75th Street Gang
Senior Star - Wexford Place
The Sweet Life at Shawnee
Lewis Family & Friends
Senior Star - Villa Ventura
Top Individual Fundraisers:
Tom Biggins
Spencer Gerber
Zach Maier
Peggy Willman
Randy Horn
Continued on page 2
Walk to End Alzheimer’s is a wonderful opportunity for
individuals with the disease, their family members, and
caregivers to enjoy a morning together as they help to
increase Alzheimer’s awareness and raise vital funds for
care, support, and research.
Memory Matters
Continued from Front Cover
Board of Directors
Chris Jones
President
Joseph P. Platt
Treasurer
Debbie Biehl
Secretary
David Marks
Past President
John C. Aisenbrey
Benjamin J. Biller
Jane Dickinson Kress
Mike Levitan
Martin M. Loring
Cathy Tivol Maslan
David R. Schlee
Chad Stout
Rob Sweatt
Suzanne Williams
Chapter Staff
Executive Director
Debra R. Brook
Office Staff
Juliette B. Bradley
Director of Communications
Scott Bradley
Special Projects Coordinator
Karen Clond, L.M.S.W.
Dementia Care Specialist
Marcia Gilbert
Dementia Care Specialist
Brenda Gregg
Dementia Care Specialist
Debbie Holroyd
Dementia Care Specialist
Jan Horn
Director of Operations and Corporate Relations
Kelly Jones L.M.S.W.
Community Connections Coordinator
Thank You to these Sponsors of the Fall Walks
Kansas City Metro
Unforgettable Sponsors
Garden Terrace
Villages of Jackson Creek
Water Station Sponsors
Lockton
Challenge Course Sponsors
Senior Star at Villa Ventura
Senior Star at Wexford Place
Wexford Place Assisted Living and
Memory Support
by Senior Star
Kid’s Corner Sponsor
PNC Real Estate
Front Runner Sponsors
North Kansas City Hospital
Pinnacle Ridge Nursing &
Rehabilitation
Village Shalom
Emporia
Pacesetter Sponsor
Friends of Stelouise & Earl Sauder
Forget-me-Not Sponsors
Wolf Creek
Presbyterian Manors of Mid-America
Ken & Margaret Wright
Remembrance Sponsors
Clint Bowyer Autoplex
Life Care Center of Burlington
Farmers Insurance
Dr. Michael & Joyce Reynolds
The Medicine Shoppe
Media Sponsors
Wolf Creek
KVOE AM 1400
Country 101.7
Mix 104.9
The Emporia Gazette
High Stepper Sponsors
John Knox Village
L&K Services
Heartland Health Laboratories, Inc.
Alzheimer’s & Autism Home Care
aNewDay at Home
Cypress Springs Overland Park
Benton House
VITAS Innovative Hospice Care
Lauren Larsen
Special Events Coordinator
Cindy Miller, L.P.N.
Dementia Care Specialist
Michelle Niedens, L.S.C.S.W.
Director of Education, Programs, and Public Policy
Jeanne Reeder, L.M.S.W.
Dementia Care Specialist
Beth Sherry
Controller
Carol Smith
Receptionist
Kim Stein
Dementia Care Specialist
Lora Swartzendruber, L.M.S.W.
Dementia Care Specialist
Susan Wagner
Donations Processor
Trish Weatherspoon
Outreach Coordinator
Adam Weigel
Latino Outreach Coordinator
Amy Yeager, L.M.S.W.
Dementia Care Specialist
2
Memory Matters
is a quarterly publication of the
Alzheimer’s Association – Heart of America Chapter
24-hour Information & Support Line 800.272.3900
www.alz.org/kansascity
Main Office
3846 W. 75th Street
Prairie Village, KS 66208
913.831.3888 FAX 913.831.1916
Northwest Missouri Regional Office
10th and Faraon
St. Joseph, MO 64501
816.364.4467 FAX 816.364.2553
Northeast Kansas Regional Office
3625 SW 29th Street, Suite #102
Topeka, KS 66614
785.271.1844 FAX 785.271.1804
Southeast Kansas Office
UCDD Building, 2601 Gabriel
Parsons, KS 67357
620.421.6550 ext. 1794 FAX 620.421.0671
Memory Matters
Surrogate Health Care Decisions Legislation
43 states have put into place provisions so that if
someone is no longer competent to make health care
decisions, but does not have a
health care power of attorney or
guardianship established, urgent
care needs still can be met. Neither
Missouri nor Kansas currently has
such provisions.
An important part of life planning would include
completing a Durable Power of Attorney. But there are
many reasons why people do not have such designations
in place. It may be that the person did not trust others or
mistakenly believed that family would be able to make
decisions for them when they were not able. In many
cases a person has no one to be designated, health care
changes suddenly, or the person with Alzheimer’s was
already too progressed before the realization that such
a document was needed. While guardianships can be
obtained for individuals who are not competent, it is a
costly and time-consuming process involving probate
court.
unable to assess information accurately in order to make a
reasonable decision regarding her care. Such a bill would
allow for a health care surrogate
to make the decision for hospital
admission. Decisions might include
physician care, hospital care, use or
termination of medicine, medical
transport or those health care
decisions made in long term care settings. This legislation
could offer much needed help to many of our families
who are struggling through difficult situations.
Health care surrogacy legislation is being pursued in
both Missouri and Kansas.You can help in the following
ways:
1. Attend the Finding Purpose through Advocacy
Class. You will find out about specific advocacy
strategies and how you might be able to help.
Thursday, December 4, 2014
10:00 a.m. – 12:00 p.m.
Thursday, February 5, 2015
6:00 – 8:00 p.m.
Both classes will be held at the Alzheimer’s
Association Education Center at 3856 W.
75th Street, Prairie Village, KS
The Health Care Surrogacy bill would fill the gap
in such situations where the needs of an incapacitated
person are more imminent and legal authority to make
decisions has not been established. This bill would
allow for health care professionals to legally respond to
decisions made by surrogates based on an established
hierarchy. An example would be Aunt Mary, who is
widowed, has no children, and had been diagnosed
with Alzheimer’s several years ago. She is demonstrating
significant paranoia that has resulted in her eating poorly,
stopping her medications, and exhibiting general distress.
She falls while trying to get her mail and is taken to
the emergency room, but because of her incapacity is
2. Share your story. People listen when real
people share real stories about their lives and
how such issues affect them. If you have been
in a situation where it was too late to obtain a
Durable Power of Attorney and you were unable
to afford/secure guardianship and are willing to
share your story, contact Michelle Niedens at
[email protected] or 913-831-3888.
3. If you are a Missouri resident, attend
Missouri Memory Day (see page 6).
Let’s Get Those Brain Cells Moving!
The following words can all have a letter added to them and then be rearranged to
make a new 5-letter word. For example:
Take the word NOUN, add the letter I, rearrange and you get: UNION.
What letter can you add to the following words to create a new 5 letter word?
1) MAIL
2) EXIT
3) GOSH
4) CITY
5) NEWT
6) DENY
Answers are below, but don’t peek just yet....give it the old college try!
MAIL + C = CLAIM
3
EXIT + S = EXIST
GOSH + T = GHOST
CITY + H = ITCHY
NEWT + I = TWINE
DENY + E = NEEDY
Memory Matters
Grief on the Alzheimer’s Journey
by Jeanne Reeder, L.M.S.W., Dementia Care Specialist
I feel just awful every time I scream
at Geoff. He said he wanted to help, so
I spent ten minutes showing him how to
scrape his plate and what to put in the
trash.The trash ended up in the sink and
I found his plate (one of our good dishes)
in the trash bag. I was so angry, I said
some hurtful things. If only he would pay
attention and try listening, I know he
could be more helpful.
Jeanne Reeder, L.M.S.W.
My mother needs help and I am trying
to be helpful, but then she yells at me to stop telling her what to
do. She has always been my best friend, and no matter what my
problem was, she could always fix it. She’s the parent, so why can’t
I just be the child? I want my Mom back!
Many might think that these calls were prompted by
poor caregiving techniques, but really grief is at the root
of these two calls. Grief affects our caregiving far more
than we realize. We often fail to recognize, acknowledge,
or accept grief and we certainly do not want to talk
about it. While caregiving is tough, time-consuming, stress
producing and, at times, totally overwhelming, recent
studies suggest that grief is more challenging than the
actual demands of providing daily care.
Grieving begins as early as the diagnosis and with each
new loss we grieve anew. We mourn our loved one’s loss of
dreams, hopes, and expectations as well as our own losses,
especially the shared hopes and dreams for our future, our
retirement. We lament each new loss: “Today, he forgot the
name of his favorite grandchild” or “she no longer has the
ability to drive” or “Sam forgot my birthday.” Each small
loss reminds us that our loved one is changing and we
cannot hold off or reverse the disease process. Healthcare
professionals and grief counselors call these poignant
reminders anticipatory grief.
This grief hides itself in feelings of denial, guilt,
frustration, anger, anxiety, sadness, and other emotions.
Sometimes, we bury our grief in the daily routine of
caregiving or in silence, fearing that others will not
recognize our grief. People expect one to grieve when
someone dies, but when no death has occurred, grief is
unwelcome and unexpected.
Grief on the Alzheimer’s journey is complex and many
layered, and anticipatory grief is not the only kind. A
caregiver called in tears one afternoon, barely able to share
her concern. Finally, she said, “I feel like a married widow
– awful – what can I do?” Nancy was experiencing what
grief therapists call ambiguous loss. This grief occurs when
the person being cared for is still present, but no longer
able to fulfill all the customary roles in a relationship.
The husband who always took care of the car for you but
now doesn’t even realize you need help or the wife who
was the perfect traveling companion but now wants only
4
to stay at home are prime examples of ambiguous grief.
Caregivers experiencing ambiguous losses have feelings of
being caught in the middle of uncertainty. How do you
resolve these losses while anticipating the many losses you
know are looming just ahead?
To deny or to make light of one’s grief or another’s
grief leads to what author Pauline Boss in Ambiguous
Loss, calls “frozen grief.” Frozen grief occurs when grief
is not supported, acknowledged, or expressed. This grief is
as common as it is debilitating. Grief is painful and who
among us likes pain? To avoid it, we try to deny it. And
others are not always comfortable with or understanding
of our grief. You may have heard someone say, “well
it is what it is, get over it,” or other well-meaning but
hurtful comments. And we often say as much to ourselves,
thinking that if we could just accept our grief, our pain,
it would disappear. We just need more courage or better
coping skills. But managing grief is not so easy.
Grief is a normal and natural response to loss, and it is
also a healing process. Managing your grief is paradoxical.
First, whatever kind of grief one has, wherever we are in
the grieving process, healing happens when we are willing
to feel and acknowledge the grief and mourn our losses.
Second, grieving is not a solitary process. We can only
resolve our grief by connecting with others. Finally, as
Anne Roiphe says, “Grief is in two parts. The first is loss.
The second is the remaking of life.”
Here are a few tips to start you on the healing
process:
• Be open to acknowledge, express, and share your
grief.
• Accept that not every one will understand your grief.
• Stay connected to family and friends who can be
supportive on your journey.
• Be willing to seek out others who can be supportive
at this time.
• Participate in an Alzheimer’s support group, learn
from others and allow others to learn from your
experiences.
• Take care of yourself. Stay physically active, eat, and
sleep well.
• Know your limitations and ask for help.
• Express your grief in creative ways through painting,
writing, photography, or other activities.
• Seek comfort from your faith community.
If you or someone you know needs more help in
dealing with grief or to be connected to a support group,
call the Alzheimer’s Association – Heart of America
Chapter office at 913.831.3888 or our 24-hour Helpline
at 1.800.272.3900.
Memory Matters
Blondes vs. Brunettes Raises Nearly $48,000
When you sign up to play in the annual Blondes vs.
Brunettes women’s flag football game, you sign up for
the package deal: practices, an impressive fundraising goal
and, ultimately, game day. But the ladies on the 2014
teams were up to the challenge and wouldn’t have had it
any other way.
These women are inspired by loved ones in their lives
who are battling Alzheimer’s or they have a deep passion
for raising Alzheimer’s awareness and are committed to
playing for the cause. To them, hours of sweat on the
football field and multiple asks for fundraising support is
absolutely nothing compared to what those dealing with
Alzheimer’s are enduring.
Whether a blonde or a brunette, each player
is motivated by having the opportunity to make
a difference and have a great time doing it. The
camaraderie that builds on the teams is inspiring and the
result of which builds from year to year, creating a solid
awareness and fundraising event for the Heart of America
Chapter.
Coaches, also held to a fundraising challenge, and
volunteers are an integral part of how this event comes
together. Although the date for the 2015 Blondes vs.
Brunettes game is still in the works, it is not too early
to express your interest in next year’s game. For more
information, please contact Lauren Larsen at
[email protected] or 913.831.3888.
The 2014 Blondes vs. Brunettes women’s flag football game was held August 18th at Shawnee Mission South High School.
5
Memory Matters
Memory Day at the Capital: A Call to Restore Alzheimer’s Grants and
Pass Healthcare Decision Maker Legislation
The Missouri Coalition of Alzheimer’s Association
Chapters will be hosting Memory Day in Jefferson City on
Wednesday, February 18. Missouri Alzheimer’s Advocates
are encouraged to attend and ask state legislators to support
the Coalition’s 2015 public policy platform.
Heart of America Chapter staff members will coordinate
carpooling to the event. Departure times will vary
depending upon an advocate’s location, but most people can
plan on an early morning drive and a mid-afternoon return.
If you are interested in advocating, but can not
attend Memory Day, you can still contact your state
representatives and ask that they support the two
legislative issues on the Missouri Coalition of Alzheimer’s
Associations 2015 policy platform:
1. Restore funding to the Alzheimer’s grants.
2. S
upport healthcare decision-maker legislation.
For more information on attending Memory Day,
please call the Main Chapter office at 913.831.3888.
Do You Have the Advocacy App?
The timely ALZ Advocacy application for Smart Phones
provides advocates in the fight against
Alzheimer’s the tools and information
they need to urge elected officials to make
Alzheimer’s disease a national priority.
The Smart Phone app provides the
following features:
• Current and informative talking
points
• Social media engagement tools
• Legislative meeting feedback forms
• Access to advocacy videos
• U.S. House and Senate directory
• The ability to take action right from your phone
To download the application to your mobile device, simply
visit your App Store and search for ALZ Advocacy.
Glen Campbell’s I’ll be Me documentary is
one you won’t want to miss seeing. The film
was shot during the Rhinestone Cowboy’s 2012
Goodbye Tour, which took place after he was
diagnosed with Alzheimer’s disease. The film will
be shown in Kansas City in December, however
locations, dates, and times have not been set as of
the printing of this newsletter. Watch for updates
at alz.org/kansascity.
A Music and Memory Holiday Wish List
6
The Music and Memory program places iPods with individuals
who have middle or later stage Alzheimer’s disease and are experiencing distress, anxiety or isolation. The program utilizes iPods,
iPod chargers, noise reduction headphones that cover the
ears, iTunes gift cards and CD’s. If you have any of these
items and want to be part of making the life of another person better, please consider donating. CD’s
can be any genre and type, but key CD’s needed are
gospel, music from classic musicals, big band music,
music from decades of 40’s and 50’s. For more information on how to donate to this program, please
call the Main Chapter office at 913.831.3888.
Memory Matters
Heart of America Chapter Upcoming Educational Events
For a complete listing of education events through June 2015 logon to www.alz.org/kansascity.
Peer support services
Support Groups: Area groups meet at least monthly for family members
to get together for peer support and to exchange information. Some groups
meet specifically for those with early-stage dementia. For a complete
list of support groups, logon to http://www.alz.org/kansascity/in_my_
community_support.asp
Breakfast Clubs: A hometown support experience where people gather in
a safe environment and where support is provided in a round table way.
Chanute, Kansas
First Wednesday of every month
Memorial Building/Alliance Room, 9:00 – 10:30 a.m.
Fort Scott, Kansas
Third Wednesday of every month
Mercy Hospital, The Xavier Room, 9:00 – 10:30 a.m.
Parsons, Kansas
First Thursday of every month
Country Mart Deli, 2020 Main, 9:00 – 10:30 a.m.
Pittsburg, Kansas
Third Thursday of every month
First United Methodist Church, 415 N. Pine, 9:00 – 10:30 a.m.
Kansas City, Missouri
Second Saturday of every month
Research Medical Center, 2316 E. Meyer Blvd, Meeting Room 3
9:30 – 11:30 a.m.
Trenton, Missouri
First Wednesday of every month, Lakeview Restaurant, 9:00 – 10:30 a.m.
other important dates
Caregiver Resilience
Caring for someone with Alzheimer’s disease is often accompanied by
frustration and depression.This program addresses ways to manage care
and cope.
Wednesday, November 19, 2014
10:30 a.m. – 12:30 p.m.
Bank Midwest, Community Room
219 S. Main Street
Rock Port, MO
Please Note – All meetings/classes are free of charge unless otherwise noted. Meetings
and classes are held in all regional offices of the Heart of America Chapter and also
in community locations. Please note the specific location where the class is held.
The Alzheimer’s Association Heart of America Chapter Main Office is located at:
3846 W. 75th Street, Prairie Village, KS; The office sits behind the Reece & Nichols real estate
building on the Northeast corner of 75th Street and Mission Road. The Education Center
is located in the same complex, but at 3856 W. 75th Street. Registration for all meetings/
classes is highly recommended and sometimes required if noted. Unless otherwise noted, call
913.831.3888 to register. Meeting times and locations are subject to change.
Family Series
A 6-session course focusing on some of the most common topics around
caring for someone with Alzheimer’s disease or other dementias. Individuals
are welcome to come for whichever topics are of concern.
Session I – What can I expect?
Session II – I don’t need any help
Session III – He just sits around all day
Session IV – Is she on too many medications?
Session V – I can’t do this anymore
Session VI – I should, I ought, I have to…
Thursdays from October 2 to November 6, 2014
1:30 – 3:00 p.m., Topeka and Shawnee County Library
1515 SW 10th Avenue, Topeka, KS
Every 1st Friday from October 2014 to March 2015
10:00 – 11:30 a.m.
Buck Run Community Center, 735 Scott Avenue, Fort Scott, KS
Finding Purpose in Advocacy
This presentation will explore ways to use your experience to become
a strong advocate for good public policy at local, state, and federal
level. Attendees will leave with Alzheimer’s related policy updates
and suggestions for taking action. Contact Kelly Jones for additional
information at [email protected] or 913.831.3888
Thursday, December 4, 2014
10:00 a.m. – 12:00 p.m.
Education Center, 3856 W. 75th Street, Prairie Village, KS
or
Thursday, February 5, 2015
6 – 8 p.m.
Education Center, 3856 W. 75th Street, Prairie Village, KS
Let’s Talk About Dementia
This program provides information on detection, causes and risk factors,
stages of the disease, treatment, and helpful caregiver tips relating to
communication, behaviors, and feelings.
Thursday, November 13, 2014
6:00 – 7:30 p.m.
Pawnee Mental Health Center Community Room
210 W. 21st Street
PLEASE Note:
All Heart of America Chapter
offices will be closed December 24,
2014 through January 4, 2015.
Resource Library
Don’t forget to utilize the convenient Resource Library in the Main Chapter
Office in Prairie Village. There are books, DVDs and other important educational
information available for checkout and purchase. No need to make an
appointment, just stop by during regular office hours — 8:30 a.m. to 5 p.m.
Monday through Friday. Much of the same material is available in our Chapter
regional offices (see location information on page 2 of this newsletter.)
7
non-profit
org
US Postage Paid
Jefferson City, MO
PERMIT NO. 210
Heart of America Chapter
3846 W. 75th Street
Prairie Village, KS 66208
CHANGE SERVICE REQUESTED
Mission Statement:
To eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected;
and to reduce the risk of dementia through the promotion of brain health.
2014 Year-End Charitable Gift
The Orscheln Foundation will generously match a total of $5,000 in contributions made in response to this letter.
Donate online at alz.org/kansascity or use the form below.
Dear Friend,
It is hard to believe that eight years ago this month my mother, Marilyn
Stout, passed away at the age of 62 after her courageous battle with early-onset
Alzheimer’s. Only six years prior to that I had lost my beloved grandmother,
Helen Mark, to the same devastating disease.
While my mother and grandmother were both afflicted with Alzheimer’s,
they shared more meaningful and special qualities such as the desire to
volunteer in the community and the gift of music. Friends of my mother always
tell me how much they enjoyed listening to her sing, and my children love
to hear stories about their grandmother’s beautiful singing voice. While I do
not share the gift of music with my mother and grandmother, I do share their
passion for volunteering in the community and supporting important causes.
This passion has led me to the Alzheimer’s Association and I am honored to
serve on the local Board of Directors. The Heart of America Chapter is leading
the charge to end Alzheimer’s and provide much needed support, education,
and care for those affected by this disease in our community. I need your help
to assist the Chapter as they lead this endeavor.
I am happy to report that the Orscheln family shares my passion and the
Heart of America Chapter’s commitment to end Alzheimer’s and provide
support to those in need. Over the last five years the Orscheln Foundation has
helped the Chapter raise more than $100,000 and has again offered to match
dollar for dollar up to $5,000 all contributions received in response to this letter.
Your help is vital and I hope that you will make a donation or multi-year
pledge commitment to the Heart of America Chapter. It is through these
donations that the Heart of America Chapter can continue to carry out
their invaluable and worthy mission and achieve our ultimate goal of a world
without Alzheimer’s for our children and grandchildren.
Sincerely,
Chad Stout
Enclosed is my tax-deductible contribution of $ _____________
r Check Enclosed (payable to Alzheimer’s Association)
r Visa r MasterCard Card
r American Express
#____________________________________ Exp Date ______
Card Holder’s Name ___________________________________
Signature____________________________________________
Donor Name ________________________________________
Address _____________________________________________
City ________________________ State _____ ZIP _________
Home Phone ________________________________________
Work Phone _________________________________________
My gift is given:
r In Memory of _____________________________________
r In Honor of _______________________________________
r Special Occasion ___________________________________
Please notify: Name ___________________________________
Address _____________________________________________
City ________________________ State _____ ZIP _________
Please return to: Heart of America Chapter
3846 W. 75th Street • Prairie Village, KS 66208
913-831-3888 or 800-272-3900
VOLUME 14 • Issue 4