|Alzheimer’s Association St. Louis Chapter Respite Care
Helpline operates 24 hours a day, seven days a week, in 140 languages.
Our staff is highly trained and knowledgeable about all aspects of Alzheimer’s disease.
If you prefer, send us a message at Helpline@alzstl.org.
We check the e-mail box M-F and will
respond to your inquiry within 1 business day.
Alzheimer's Association St. Louis Chapter Headquarters
St. Louis - 9370 Olive Blvd.,
St. Louis, MO 63132-3214 Phone 314.432.3422
This chapter takes the widest possible interpretation of communication,
acknowledging what linguists and social researchers tell us --that only 30 percent of
human communication is verbal, and the rest is symbolically expressed through body
language, actions, and behaviors. Begin our understanding by listening to what the
person says and responding or interacting kindly.
When you speak with a person who is deeply impaired by Alzheimer's, speak in
sentences that are clear and simple, in a voice that is soft and kind, in a manner that is
unhurried and relaxed. Sharp voices agitate;hurry causes nervousness and
dysfunction; complexity causes intellectual overload, which will bring about a distress
response that could be rage, tears, anxiety, or extreme slowness and inability to do
tasks. Speak on the same level as the person, both literally so you can be face to
face, and figuratively so that you express ideas in a way that can be easily absorbed.
No one likes to be patronized, and people with Alzheimer's resent it as much as
anyone else. As caregivers we always need to remind ourselves that, just because
people have Alzheimer's disease, it does not mean they are either insensitive or
stupid. They are functionally impaired, not stupid, and they are often highly aware of
their own and other people's feelings. They many sometimes say thing that we would
consider inappropriate and hurtful--
"Oh, you're very fat, aren't you?"--but this is due to unlearning,
the societal inhibitors they were taught when young.
Be sure to approach the person from the front so you can be seen. Surprises are not
welcome in the world of dementia. Speak clearly, give plenty of time for the other
person to respond, and avoid memory questions. To be sure you have the person's
attention, gently place your hand on his or her arm, hand, or shoulder and be sure you
have eye contact. Persons with Alzheimer's often spend periods of time in altered
consciousness and they need to be gently brought back into the here and now.
It is astonishing how many caregivers think it appropriate to ask a person with severe
memory problems all kinds of questions involving memory. Here is, unfortunately a
typical family dialogue:
"Hi, Ma, how are you? Do you know who I am? No, not, Vonnie, that was your
brother. Why would you think I was your brother, Ma? Do you know the names of your
other children? Huh? Well, what did you do today, Ma? What did you have for
breakfast? Look, do you know who this is? Huh, Ma?"
If this man could accept his mother's Alzheimer's disease, the greeting might be much
less distressing for all concerned if it went as follows:
"Hi, Ma, it's me, your son, Ron. Good to see you. Boy, you look pretty nice today.
Let's see, it's about five now. They'll be bringing your dinner at six, so that gives me
enough time to show you some photos we took last week."
This communication works better because it does not constantly put Ron's mother to
the test. It also considerately supplies linkage and potentially missing information and
it keeps emphasis on the here and now. The photographs will give Ron a chance to
identify other important family members and to remind his mother that they exist and
they love her. The past is a murky country for the Alzheimer's sufferer and the future
has often become unimaginable, but the present is always with us. Therefore, we can
always rely on the present to be a part of our communication that can be fully shared.
Just as when we meet a stranger at a social gather, we need to introduce ourselves
afresh each time we meet a person with Alzheimer's disease. Here is another
common example of a distressful communication:
"You remember me, don't you? Can you tell me what my name is? Do you remember
what we did last week? We really enjoyed ourselves. Don't tell me you've forgotten
This would be much less distressing rephrased as,
"Hello, Irene, I'm, Sally. I met you last week at the center and we had a lot of fun
dancing together. My goodness, you're a really good dancer, aren't you?"
Relatives too, should learn this social skill of introducing themselves. This will help to
remove some of their distress when their husbands or fathers or mothers cannot get
their names right. It is not personal, not an attack on their individuality. It is merely
due to the disease's attack on the brain of the sufferer. Memory capacity varies from
day to day, literally, and there will be better days and worse ones.
Conversational chit-chat can remain as a good social skill even among the deeply
afflicted. This can lead distant family members to assume that the person is in better
shape than he or she really is. A typical family miscommunication along this line might
be as follows:
MARY: Mom, this is April on the telephone.
MARY: Yes, your daughter April. She's my younger sister.
MOM: Well, who are you?
MARY: I'm your oldest daughter. Now, come on, April's here on the telephone.
Mom heads into the kitchen because she has no idea what the word telephone
represents anymore. Mary retrieves Mom and leads her to the telephone. Mom puts
the wrong end of the receiver to her ear and Mary puts it the right way up.
MARY: Say, hi April.
MOM: Hi, April.
APRIL: Oh Mom, it's so good to hear your voice. You sound great. How are
MOM: I'm doing fine.
APRIL: So did you go to Henry's for Thanksgiving?
MOM: Yes. [Actually she did not.]
APRIL: That's great. Did you enjoy yourself?
APRIL: Well, Bill and I are fine and...
Two minutes after this conversation ends, Mom has forgotten entirely that there was a
call, and April is telling Bill that Mom sounds fine and she cannot possibly be doing as
badly as Mary always says she is.
A number of other major problems in communication concern memory issues. We do
not really understand how deeply we are tied into our memory structure until we live
with someone who is not. Then we see that the loss of reliable memory function
fractures the whole of life. Caregivers who are confronted by this often find
themselves frustrated , sometimes hurt, and often caught up in uncomfortable
exchanges that result in bad communication. These appear constantly in the
questions raised by caregivers in Alzheimer workshops:
"My dad has no idea what year this is. I think he thinks it's about 1925 and he calls
me by his brother's name. What should I do?"
The major loss in memory dysfunction is knowing what year this is. Memory is like a
ship, anchored to the current year, and when it loses that anchor entirely we never
know from one moment to the next what year that person's memory has drifted into.
To the person with Alzheimer's, memories feel as real as experience of the here and
Rather than designating this as a delusion, it is more useful to consider it as a loss of
reference system. When confronted by a parent whose memory ship may have
floated back to age sixteen in Texas, acceptance can be very calming. If the son
explains that this is 1993 and he is not his father's younger brother, this information
may not be acceptable or understandable. It may seem as if a time machine has
suddenly landed from the future. Experimentation is the answer. If his father can
accept gentle reorienting to the here and now, that is good. If he does not accept it or
seems uninterested, then the son needs to accept his father's drift of memory.
One area of communication that puzzles and often hurts family members is their
misidentification. A son is thought to be a brother of father; a daughter is called sister
or mother; wives are though to be mother; husbands are called daddy. These
misidentified relatives feel rejected and hurt. However, if they put themselves into that
frustrating Alzheimer brain, they might see that, first, the ability ot label a person
correctly has been destroyed. Second, if the memory ship has drifted to the past, to
premarriage days, then it makes sense that they cannot be spouse or child in that
particular memory picture. Third, when they are named as the parent, the person is
really saying, "I love you and I need you love and care and protection as a child needs
his parent." When they are named as a sibling, the person is saying, "I know you are
very near and related to me."
What we have here...
is a failure to communicate...
Available on eBooks... by different authors...
Books by Frena Gray-Davidson...
|IN CASE OF EMERGENCY PHONE NUMBERS
We all carry our mobile phones with names & numbers stored in its memory but nobody, other than
ourselves, knows which of these numbers belong to our closest family or friends.
If we were to be involved in an accident or were taken ill, the people attending us would have our mobile
phone but wouldn't know who to call. Yes, there are hundreds of numbers stored but which one is the
contact person in case of an emergency? Hence this "ICE" (In Case of Emergency) Campaign
The concept of "ICE" is catching on quickly. It is a method of contact during emergency situations. As
cell phones are carried by the majority of the population, all you need to do is store the number of a
contact person or persons who should be contacted during emergency under the name "ICE" ( In Case
The idea was thought up by a paramedic who found that when he went to the scenes of accidents, there
were always mobile phones with patients, but they didn't know which number to call. He therefore
thought that it would be a good idea if there was a nationally recognized name for this purpose. In an
emergency situation, Emergency Service personnel and hospital Staff would be able to quickly contact
the right person by simply dialing the number you have stored as "ICE."
For more than one contact name simply enter ICE1, ICE2 and ICE3 etc. A great idea that will make a
Let's spread the concept of ICE by storing an ICE number in our Mobile phones today!
People with Alzheimer's are not able to distinguish light colored food and drink
on or in typically light colored tableware. When using tableware that offered a
high contrast to the food and drink (i.e.: bright red and bright blue),
researchers noticed that the participants in the study increased their food
intake by 24% and liquid intake by 84%.
You can now read your ebook online from any computer, anywhere ...
eBooks.com has just released eb20, a web-based ebook reader application. This means that, in
addition to downloading an ebook to your computer or device, you can now read the book online from
any computer with a supported web browser that's connected to the internet. eb20 requires no software
installation and enables you to just start reading a work, seconds after buying it.
In the coming months you'll see more and more of our books available through this simple online
reading interface. As books are converted to eb20 format, you'll see a little Read Online link next to the
book in your eBooks.com account. Just click on that link and start reading. When buying a book, if you
see Available to read online in eb20, it means that, once you've paid for it, you'll be able to download
the ebook and read it online anywhere, anytime.
|The Household Door/Window
is a magnetic contact sensor system that will
monitor any door or window within your
house, notifying you instantly via audible and
visual indicators if the entry is breached.
Our adaptive Special
Needs Jumpsuit can
help solve Alzheimers
It has a strong weave
and long heavy duty
back zipper to provide
even more protection
Comfort for Early-Stage
The Kind Reminder™ was
created by the daughter of
someone who is an Alzheimer's
patient. It is a recorder
specifically designed for people
with dementia. It may be worn
as a pendant or placed on a
nearby table or counter. It is
compact, lightweight, and easy
to operate - just press the one
big visible button to hear a
Caregivers can change
messages easily and often.
They can record messages that
anticipate the frustrating,
repetitive questions often asked
by Alzheimer's patients. This
can help reduce caregiver
|Care Consultations in Community Setting/Alzheimer's Association, St. Louis Chapter
Are you someone who is newly diagnosed who needs help with the “what next?”
Are you a caregiver who needs help locating community resources or developing a Care Plan for their loved one, a family who could use
the support of the Alzheimer’s Association, or a caregiver who is under a lot of stress who could use extra support from the Alzheimer’s
Call Katie MacLean at 314.432.3422 to schedule a time to meet for a one-time in-person meeting, with follow-up calls done by our
disease and to help them develop a plan for how to deal with it.
Care Consults are usually limited to one-hour and held in a community setting, to be determined by the caregiver;
usually at a local coffee shop, library or other public place. Katie is not allowed to do home visits.
*Scheduled on a first-come, first available basis. *Care Consultations done in the community are free.
Katie covers these counties in Missouri: St Charles, Lincoln, Warren, Pike, and Jefferson
Katie MacLean, MSW | Outreach Coordinator | Alzheimer's Association, St. Louis Chapter
9370 Olive Blvd | St Louis, MO 63132 | 314.801.0419 w | firstname.lastname@example.org
Toobeez Special Needs Occupational Therapy Workbook - Download $19.99
Coordination, Occupational Therapy, Caring, Teamwork, Motor Development, Perseverance, Unique, Motor Skills
Toobeez Physical Education Activity Book - Download $9.95
Physical Education Activities, New P.E., Polymetrics
Toobeez Math Activity Workbook - Download $9.95
Toobeez Math Activity Workbook - Softecover $29.99
Our Toobeez Math Activity Workbook is packed with 11 hands-on activities designed to guide you through comprehensive lessons
every step of the way. Toobeez fosters communication, collaboration and working together as a team. Play You Sank My Battleshape to
teach X and Y axes and +/- quadrant values. Enable students to define and classify obtuse, acute and right angle with Protractor
Practice. How about a quick game of Math Hot Potato to use to review materials before a test? 11 activities with 23 variations.
Toobeez Therapy Activities for Seniors Book- Download $9.99
Toobeez Therapy Activities for Seniors Book- Softcover $29.99Perseverance, Concentration, Unique, Tactile,
Coordination, Short Term Memory, Visual Memory, Occupational Therapy
Training with a Twist for Corporations - Download $19.99
Training with a Twist for Corporations - Softcover $19.99
Communication, Cooperation, Creative Thinking, Decision Making, Diversity, Ethics, Influence Leadership, Negotiations, People
Development, Project Management, Strategic Thinking, and Teamwork.
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|The Caregiver's Sourcebook
by Frena Gray-Davidson
A must-read reference for those of you who are caregivers
to either a member of your family or a friend, this
heartwarming, supportive book explains to you the
intricacies of the caregiving experience. The Caregiver's
Sourcebook features separate sections on caregiving for
specific disorders including AIDS/HIV, Alzheimer's disease,
Parkinson's disease, heart disease, old age, and much
|Alzheimer's Activities That Stimulate the Mind
by Bazan-Salazar, Emilia
Based on its author's four-year study and 15 years of experience in Alzheimer's and
dementia-related care, Alzheimer's Activities That Stimulate the Mind is the only book
offering exercises appropriate to each of the four stages of the disease. It features
hundreds of exercises across an array of areas and disciplines, including arts and
crafts, community outings, physical activity, religion and spirituality, grooming,
gardening, music, and many more.
Emotional Survival Guide for Caregivers: Looking after Yourself and Your Family While
Helping an Aging Parent
by Barry J. Jacobs
Caring for a parent whose health is in decline turns the world upside down. The emotional fallout can be
devastating, but it doesn't have to be that way. This is an empathic guidance from an expert who's been there
can help. Through an account of two sisters and their ailing mother - interwoven with no-nonsense advice -
"The Emotional Survival Guide for Caregivers" helps family members navigate tough decisions and make the
most of their time together as they care for an aging parent. The author urges readers to be honest about the
level of commitment they're able to make, and emphasizes the need for clear communication with each other
and their aging parent. While acknowledging their guilt, stress, and fatigue, he helps caregivers reaffirm
emotional connections worn thin by the routine of daily care. This compassionate book will help families
everywhere avoid burnout and preserve bonds during one of life's most difficult passages.
A Caregiver's Guide to Alzheimer's Disease: 300 Tips for Making Life Easier
by Patricia Callone , Roger Brumback , Connie Kudlacek , Barbara Vasiloff , Janaan Manternach
An estimated 5 million Americans have Alzheimer's disease. That number continues to grow — by 2050 the
number of individuals with Alzheimer's could range from 11.3 million to 16 million.
Alzheimer's disease is not a normal part of aging. It is a devastating disorder of the brain's nerve cells that
impairs memory, thinking, and behavior. Winner of the 2006 American Journal of Nursing Book of Year Award,
A Caregiver's Guide to Alzheimer's Disease will help readers understand what is physically happening to the
brain so they can empower their own special skills and talents throughout the disease process.
Chapters cover legal and financial issues, family forums in the caregiving process, the role of medication at
various stages of the disease, helping children understand what is happening to a loved one, handling the
holidays and celebrations, and making the living environment more stimulating and enjoyable. With an
abundance of pointers and guidelines for affected individuals, their families, friends and caregivers,
A Caregiver's Guide to Alzheimer's Disease is essential for all readers who want to focus on the capabilities
that remain instead of those that have been lost.
Do not ask me to remember,
don’t try to make me understand.
Let me rest and know
you’re with me,
kiss my cheek and hold my hand
I’m confused beyond your concept,
I’m sad and sick and lost.
All I know is that I need you,
to be with me at all cost.
Do not lose your patience with me,
do not scold or curse or cry.
I can’t help the way I’m acting,
I can’t be different though I try.
Just remember that I need you,
that the best of me is gone.
Please don’t fail to stand beside me,
Love me ‘till my life is gone.