June 16, 2015

tion

bringing awareness

Volume 5, Issue 4

The Memory People Page

Every Day is Awareness Day in Memory People
by Leeanne Chames

changing lives

June is Alzheimer's and Brain Awareness month. If

you've been affected by Alzheimer's Disease or any
other type of progressive dementia-related brain
disease, you understand the need for awareness, the
need for people to be educated about this epidemic
and its effects on the millions walking with dementia
today.

Awareness does that. It educates, informs, and brings to light the gravity and scope of
this horrific disease.
When most people think of awareness, they picture marches on Washington and
signing petitions. They think of staggering statistics and pie charts that show the toll
that Alzheimer's disease has taken. They think of Walks and raising money and
hoping for a cure.
If you're a member of Memory People, the support and awareness group on Facebook,
you may be wondering where the awareness part of the 'support and awareness'
equation is that we talk about so much. I'll be honest, when I first joined, I was kind
of wondering about that too.
I didn't see posts about how to write my congressman. I wasn't asked to sign
petitions, or encouraged to march on Washington. I was honestly a little confused
about the awareness part of the focus of the group.
What I did find the moment I joined Memory People was a love and acceptance that I
had never found in any other online support group.
I've been a long time member of many
online groups, from homeschooling
groups to religious groups and I have
never found the instant gathering in,
the friendship and the love that I did
from the very first moments I was
added to Memory People.
There were hugs, welcomes, members
asking me to tell my story, and when I
did, more hugs and 'I understand', and
'we care'. I have never experienced
such a real feeling of support in an
online environment ever.

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Volume 5, Issue 4

I thought to myself over the next weeks and months, that this place has the
support side of this dementia journey covered, without a doubt.
But I was still wondering where the awareness was.... especially as I saw from
the beginning that Memory People is a Closed Facebook group. How can you
bring awareness when no one but members can even see what's going on here?
I found Mp after my Mother in law was diagnosed with Alzheimer's disease. I
went online looking for help so I could help my family.
Over the following weeks and months things began happening to her, and to all of
us. Things that made no sense. Things that made me sit down at my computer
and read posts and ask questions wanting to find out, is this normal? What's
going to happen? And most of all, how in the world do you handle this???
As I read posts I realized I wasn't alone. So many others were going through
this, some were much farther along in this journey than I, and their loved ones
far worse. I read many posts with tears streaming down my face.
I asked questions and realized little by little what I was going to need to do. I
wasn't sure how yet, but I kept hearing about the need to walk in her
world. Accept what she said and did. Try to keep her Safe, Pain-Free, and
Content.
The most eye opening and helpful information came from the patients in the
group as they talked about how they felt. How they could feel alone in a room full
of people. How they could look like they're following a conversation but really
have no idea what was going on... and on, and on. The stories from the patients
were the most heartbreaking of all for me, and they still are.
The more I learned, the more I began to hate this thing called Alzheimer's. What
I read on Mp I saw in my Mother in law and I hated it. I also hated seeing what it
was doing to these wonderful new friends that I had made.
It all started to change me and I actually started to be able to 'walk in her
world'. I slowly learned to accept things that didn't make sense, and let go of
things that didn't matter. Over time, most of what happened fell into one of
those two categories. I accepted that she needed us now, instead of the other
way around.
Every day I felt my heart break a little more. And every day Mp was there with
encouragement, understanding, and amazing hope that told me that even though
this is really bad, we're going to pick up the pieces and we're going to live and
love today as much as we can... and then we're going to do it all over again,
tomorrow.
I was learning and I was gaining knowledge. I felt a measure of power over this
horrible thing because it was like I had this imaginary toolbox that my friends in
Mp had helped me fill up with advice, ideas, resources and encouragement to help
my Mother in law, my family, and myself.

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Volume 5, Issue 4

They didn't always work. Many times the advice and resources didn't help at
all. But there was another tool in my toolbox that always worked, and that was the
realization that this cannot be fixed.
There was nothing I could do to turn this around, nothing I could do to stop what
was happening and stop what this disease was taking from my sweet Mother in law,
and us all. Nothing to stop the heartbreak and loss.
That sounds really depressing, but I found it to be the opposite. The realization
that there was nothing I could do to fix this brought an end to my struggle to feel
like there should be something we can do, or there must be something I am missing
or doing wrong.
The realization that we could not fix this freed me from the responsibility of this,
and also from much of the guilt that was piling up in my heart. All of that I
realized, belonged squarely on the shoulders of this wretched disease.

So what does all of this have to do with

awareness you ask? In the same way that over
time I learned that Memory People does not
follow the norm, the typical, or the standard
way of how things are or 'should' be done, I
also realized that the awareness part of the
equation is a whole different kind of awareness
than what I had always thought it to be.
There is awareness in Memory People, but it's
not your typical every day march on
Washington and sign this petition kind of
awareness. As I said, I have learned that the
words Memory People and typical never belong
in the same sentence.
My Mother in Law,
Ruth Elizabeth Chames
We have a different brand of awareness in Mp. It's not awareness that uses pie
charts and statistics. No, to understand our kind of awareness, you have to go
much, much deeper than that.
Awareness in Memory People takes place in the hearts and minds of the patients,
caregivers, and all of the members there. It's learning and gaining knowledge of
dementia, an acceptance of what is and a new found level of compassion, love, and
patience that many, like me, never knew existed.
These things you cannot get from petitions and statistics. The reality and horror of
the toll of Alzheimer's disease cannot be found in the halls of congress or in a
power point presentation.

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Volume 5, Issue 4

I learned that the real knowledge of Alzheimer's disease is found in something that
we always have and is with us wherever we go. It is in us... in the hearts of
everyone who is affected by this disease. It's in our stories and our lives. It's in our
heartbreak and tears streaming down our face for people that we have never
physically touched and probably will never meet.
The awareness that I began to gain was born out of the support that I had been
getting since day one. Here in Mp they go together hand in hand. You cannot
separate one from the other. From support comes awareness. Then that person
shares their awareness with someone else facing this. That person is supported and
out of that grows more awareness. And this is repeated over and over.
Every time a new member is added to Memory People we see it play out again and
again. Instant love and compassion and understanding.... support. Then comes
learning, ideas and resources that slowly fill that members' toolbox.... awareness.
They tell someone else and pass on their awareness and before you know it you
have over 11,000 people walking together, supporting each other and bringing life
changing awareness to the world of dementia, 24 hours a day.
This is Alzheimer's and Brain Awareness month. In Memory People we don't have a
special Alzheimer's and Brain awareness month, week, or day. Why you
ask? Because we bring awareness every single moment of every single day.
It would actually be impossible for us at Memory People to stop bringing awareness
because it happens as we walk this together, as we learn and share our stories and
accept this horrible nightmare into our hearts and minds and lives.
If you're touched by Alzheimer's disease or by another type of dementia related
disease, you know that it doesn't take a day off, and in Memory People we dont
either. We are here for you... for support and awareness, 24 hours a day, 365 days
a year.
We are always walking this together, the good, the bad, and the days that you don't
know how you can take another step.
If you are reading this and you are in need of support or you know someone who is,
please look us up. We're Memory People, on Facebook.
There is no reason anyone has to be alone in this journey and no reason anyone
doesn't know what Alzheimer's is or what it does. We welcome anyone, even if
you're just wanting to know more about dementia. Awareness and Support. No one
does it better than Memory People.

Leeanne Chames is the Executive Director of Memory People and Personal Assistant to Rick Phelps, the
Founder of Memory People. If you have any questions about how to join Memory People or questions
about dementia, please email us at memorypeople2010@gmail.com.

June 16, 2015

bringing awareness

changing lives

Volume 5, Issue 4

Back in the Day

A Collection of Treasured Memories
From the Members of Memory People

Back in the day... who would have thought by

the smiles on their faces would be such a
blessed memory.
Clata and Leonard Redmon were married
almost 45 years when, 2 1/2 years ago, my
mom overcame her cancer and entered her new
eternal journey.

Clata and Leonard Redmon

I say overcame cancer, because where she is,

cancer cannot be. When she left this world, the
cancer died. Just as my precious momma was
diagnosed with cancer, my daddy was
diagnosed with vascular dementia.
What a year that was!

However, being a family of faith, we look back at that time frame and realize
that God carried us for a long while; and still sometimes now. My family are like
many others; struggling day to day with memory loss, combative behavior,
sleepless nights, guilt, and so many other feelings with names.
It is because of these "Back in the Day Memories" that we make it through. My
dad may not remember the photos with those memories, however, we are
blessed to be able to take time and share those memories with him through
photos or song, or retelling stories he once told us. Yes, I to HATE these diseases
that destroy the body and mind.
Learning to focus on what I do have control over, what I can contribute to my
dad's life, as limited as it may be, is where I try to stay. When I allow myself to
stay in what I have no control over, it controls me. My dad may be a victim to
this disease, but in the name of Jesus, I refuse to succumb to the mentality that
it can have on me has his caregiver.
Yes, there are some bad, real bad times. However, I read posts of others who
are going through the same as our family and I am blessed to know that this is a
community of support, a place to vent, to be angry, to be sad, but also a place
to share and give back and to encourage others and to be encouraged that we
must not give up the fight for ourselves, our loved ones and those that caregive.
Blessings to each for the journey we are all on. ~ Wanda Redmon

June 16, 2015

Volume 5, Issue 4

My mother has been diagnosed with Vascular

Dementia. She currently resides in a nursing
home. It was a very difficult but necessary
decision to place her.
If anyone were to just look at my mother,
they would assume she was fine, until they
spoke to her. She gets jumbled and confused,
is agitated very easily, and has lost her sense
of reality. She creates convenient delusions to
keep her comfortable.
Over the course of time she has forgotten that
she has children. I am no longer her daughter
in her mind. Instead I am her sister. I am
both saddened and honored at the same time.

My Mom and Marcos

I am sad that I am not able to share the mother-daughter type of conversations,

but at the same time honored that she has placed me on such an even level, that
she respects me and loves me so much.
The day that she was first brought to the nursing home, the director of the
Alzheimers unit, Marcos, was there. He was working with the other patients, or
residents as they are called. He is a happy, vibrant person who elicits such a
wonderful response in people and brings some much needed life and smiles to
what is potentially a sad environment.
Well, I was with my mother, getting her settled into her new room, when Marcos
came in the door to say hello, introduce himself and meet my mother. My mother
was polite, Marcos went back to the other residents and my mother turned to me
and said, I hope that man leaves me alone. I knew that was not going to happen
and just prayed she adapted.
Things have come a long way since then. Marcos and my mother have become fast
friends. My mother holds a special place in Marcos heart, and she thoroughly
enjoys him now. Each day at activity time, she helps Marcos bring the activity
supplies from the storage room to the main area and helps set them up for
residents.
She feels good when she has a job to do so this has been priceless for her. He
shares a lot of similar musical interests so they talk music and movies together,
and he has her help cook special treats for the other residents with him. It has
changed things for her, and given her something to bring the life back to her.

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Volume 5, Issue 4

Her initial depression when she first got there has faded and I have Marcos to thank
for that. He has gotten her out of her shell and brought the smile back to her face.
This photo was taken as they were getting ready to bring the activity supplies back
to storage. Marcos talked my mom into putting on a funny sombrero that he had
brought with him. She was laughing and it was a wonderful day. This photo still
brings tears to my eyes. It is so wonderful to see her like this. I take many photos,
so that I can cherish these happy little moments as her disease progresses. I visit
her regularly, and one day a week we bake together at the nursing home, which she
absolutely loves.
I am blessed to have this time with her, despite her disease, and I am blessed that
she considers me her sister now. When I changed in her mind from her daughter to
her sister all the nastiness stopped, there were no more snide comments, no more
sarcastic insults, none of the things that left me a sobbing mess after a visit. Most
days now, I leave there smiling, knowing that she is happy, and that she has a
created a new life for herself, and that she has someone so wonderful as Marcos
looking after her while she is there. ~ Angela Cook

~~~
In this journey of dementia knowledge is power and
it opens the door to acceptance and awareness.
Rick Phelps, the Founder of Memory People was
diagnosed with Early Onset Alzheimers Disease in
June of 2010 at just the age of 57.
After his diagnosis, he embarked on a journey to
educate and help others that have also had
dementia come into their lives.

In his book While I Still Can, Rick explains how this disease began, the difficulty
getting friends and family to understand, and the days of diagnosis and how this
disease has affected he and his entire family since.
The chapters are short and easy to read for patients and caregivers alike. The
Kindle price is a great deal at $3 and provides hyperlinks to sites with helpful
information and resources.
While I Still Can is available on Kindle Edition and in Paperback, on Amazon as well
as Barnes and Noble and at all major book retailers.

June 16, 2015

Volume 5, Issue 4

Resources

In caring for loved ones ~

If you are on the front lines of
this war and are making difficult
decisions from a foundation of
love, whether your loved one is
in home care or in a care facility,
you are a Care Warrior!
~ Diane Elinor Hoover

Following is a list of helpful resources for the

issues that face patients and caregivers in this
journey of dementia.

- The Agency on Aging is a good resource

for in home help, caregiver respite, etc.
Their site is http://www.n4a.org/

- Elder Law Attorneys should be one of the first people you call when you get the
news of dementia. They can sit you down and explain what you need to do, how you
need to do it, and when it needs to be done. There are legal ways to protect ones
assets, and an elder law attorney specializes in these kind of things. National
Academy of Elder Law Attorneys website https://www.naela.org/
- Call Adult Protective Services if you feel your loved one is in a situation where
they need some sort of intervention. Be it the way they are being treated, not being
cared for properly, or you suspect any kind of abuse. National Adult Protective
Services website http://www.napsa-now.org/
- Hospice is for end of life and grief support. They will come to your home and talk
about the options and when it is time for them to be involved. National Hospice
and Palliative Care Organization website http://www.nhpco.org/

The Memory People Page is a publication of

Memory People, Inc., an Alzheimers/Dementia and Memory Impairment
Support and Service Organization.
If you would like to start receiving this newsletter, to submit a story, or contact the editor,
please email Leeanne Chames at memorypeople2010@gmail.com
If you or a loved one has been touched by any type of dementia or memory impairment, if you
are an advocate, or if you want to know more about dementia, please join us for 24/7
support and awareness at Memory People Online, on Facebook.

bringing Awareness, changing lives

Copyright 2015 Memory People, Inc.