June 27, 2011 Issue No. 11

tion

…bringing awareness

one person at a time…

The Memory People Page

In last week’s newsletter I touched on the importance of

awareness. As the week went on, we had some good

discussions about awareness on Memory People, not only

what it is and how do we raise it, which were my first

questions, but also perhaps, how do we begin within

ourselves. How does acceptance and denial affect our

awareness, and in turn, the awareness we share with

others?

It seems to be a more multi-faceted issue than simply

understanding this disease and talking about it.

This week we have more writings by some of our own

members who are walking with this every day. I invite you to

read these insights, let the words go deep, and in the pain

and sadness, walk this road with those here, and with your

loved one who needs understanding and someone to be with

them in their world. As Rick says, there’s no time for denial.

This disease does not wait for us to accept it.

When we let this in to our hearts, and take a step toward

acceptance, a wonderful thing can happen. In the midst of

the pain, we can find a relationship and a level of connection

with each other that many never find. Life becomes more

precious, time becomes more treasured. That’s what has

transformed Memory People from a group into a family;

walking this journey together, in support, awareness.. and

acceptance.

Cont’d next page..

One overriding sentiment I have seen this week is that it is much easier to get the

information about Alzheimer’s through your head than it is to accept the pain and

devastation of it in your heart.

As with most diseases, the statistics alone do not bring us to true awareness. What does are

the things that speak to our hearts; the patients who live this disease that say ‘walk a mile

in my shoes, try getting away from this disease for an hour, or even a minute. Try living

these foggy, lost days, day after day’. And also the caregivers, who helplessly watch their

loved ones slip and become increasingly confused and blank. And in that pain and sadness

we find ourselves faced with our own acceptance or denial of it, as a patient, caregiver,

family member, or friend. Everyone who comes face to face with this disease is faced with

this issue of acceptance or denial. And even more painfully, it doesn’t appear to be a

onetime issue. Each time this disease takes something more away from us or our loved one,

we find another level of acceptance is required.

In the midst of

the pain, we

can find a

relationship

and a level of

connection

with each

other that

many never

find.

June 27, 2011 Issue No. 11

The world we

always knew

and were

familiar with

is gone. We

are never

quite sure

anymore.

Linda Daniels-

What I need is a stress free day. If there is no one telling me what to do, and please don't

yell at me, or anything loud like playing music, that is all overwhelming for me. Just talk to

me like you would want to be spoken to. If I ask you to repeat something please don't get

upset with me, it is because I am trying to understand what you have just said to me. If I

have trouble remembering things, I write things down. I have several pages on how to

operate different things in my household if I can't remember how to operate them again

like I did a year ago. The main thing I have discovered is that I had a lot of stress in my life

and in my mind and my body was shutting down because of it. I thought I could handle all

that since I was a caregiver for 23 years but since I got rid of the stress and was put on

Aricept I am like a brand new person.

Tom Miner-

It really helps if a person doesn't talk down to me like I'm an idiot.

Donnamarie Baker- I can only speak for early years, but with good days and bad days what you may need

varies. One constant I can say is fear. So I guess an understanding that we always have

fear would be number one. There is fear of what the future will bring of course. We know

what is waiting for us down the line if we live that long. Fear of what this disease will do to

our loved ones. Will they lose everything caring for us? What will happen to me if

something happens to them? Who will be there for them when I can’t be?

Fear on some days for no reason. Just a free floating anxiety that we can’t explain. But it

makes us pace; or cry; or cling to you or follow you everywhere. It gives us nightmares.

Fear on good days. Even if I am having a day where you wouldn’t

realize there was something wrong with me unless I told you or

you knew me well, fear is there. And that fear is because even if

we look and talk and act fine, the world around us is not solid. The

world we always knew and were familiar with is gone. We are

never quite sure anymore. We have to fight to understand what is

being said, what we are hearing, how things look, what exactly is

going on.

It’s like being dumped in an alternate universe where nobody told

you the rules. It’s like trying to grab smoke.

So understanding that constant fear and uncertainty.. even when all seems fine, it’s not;

not really. Take a few extra minutes to reassure us, or make sure we are not getting

overwhelmed. If you have to repeat something, or explain it again, or just have patience

because we are walking slow because even the ground itself betrays us. This isn’t the best

comparison, but you remember when you learned to ride a bike? And somebody ran

alongside to catch you or steady you if you started to fall? That’s what helps. Knowing

you will be there to steady us and help us when we start to fall.

Cont’d next page..

June 27, 2011 Issue No. 11

Pam Brown Margolis-

What I need from others is a little time; give me an extra second or three to answer the

question. Don't snap your fingers and expect me to be able to rattle off an answer of any

kind like I used to be able to. Which leads to...remember, while I am still me, I'm slightly

different. Don't make me feel bad for not being the old me or remind me of what I used to

be able to do. Just give me the space to be me; even if that does mean forgetting the word

for rubber band or taking too long to answer a question.

Chris Westfall Ballard- I think one of the things that has been hard to lose is being needed. I contributed a lot in

our day to day life, was active politically, earned a decent living. Now I'm the one that

needs the help. But I still want to be treated with respect. My family is really good not to

patronize me. But respect is a big deal, especially when you realize at some point in time

you will be entirely at someone else's mercy, when the progression nears its end. Don't

get me wrong, I don't dwell on that end-time. I do live each day as it comes.. lol! But it's

still coming.

I need for others to be patient when they're dealing with me. I do the best I can, still. My

husband just goes with the flow, but even he, once in awhile will throw his arms up in the

air and decide it's easier to just DO something than to explain yet another time how to do

it. That IS tough, when we simply do not understand.

I know this sounds needy, but so be it. I need to be kissed, hugged, and told "I love you".

It's so easy for us to just shut off from humanity, and I sure don't want that to happen. I

know I'm not quite the person I always was. I think everyone needs those things, be it the

patient or the caregiver. We miss the intimacies, and love can be shown in so many ways.

We just don't want to feel like we're a burden, ever.

~ Thank you to everyone who contributed to this article. We appreciate your openness and honesty ~

Hold Me Like The River Jordan And I Will Then Say To Thee You Are My Friend Carry Me Like You Are My Brother Love Me Like A Mother Will You Be There? Weary Tell Me Will You Hold Me When Wrong, Will You Scold Me When Lost Will You Find Me? Will You be there by Michael Jackson

June 27, 2011 Issue No. 11

Chicken Soup…

This is an excerpt from a post by Rick Phelps, about his book “While I Still Can”, and why he’s writing it.

May 7, 2011

"You may say I'm a Dreamer, but I'm not the only One..." Dreamer. That I am. I see things different than a lot of people. I see this book we are embarking on as God's work. This whole journey has all been planned out already. I have known since my diagnosis what I have to do, and God has known from the beginning. Do I wish I never had gotten this terrible disease??? Of course. But I know, in my heart of hearts, God has a plan for me. Alzheimer's has been around for many many years, and no one, well not many, give it a second thought. Till they’re affected. Well, this book is going to change that. I am going to write it in a way that the reader will be walking this walk right along with me. And by the end of the book, the reader will be talking about things they never realized about Alzheimer's... but most of all, how to not deny this disease, if it comes into your family.

There will be light parts. But for the most, I want to grab the reader from the first page, and take them on the rollercoaster ride of a lifetime.

[Type a quote from the document or

the summary of an interesting point.

You can position the text box

anywhere in the document. Use the

Text Box Tools tab to change the

formatting of the pull quote text box.]

Memory People is on Twitter! Follow our group’s news and updates @MemoryPeople.

We want to welcome all of our new

members to Memory People! You

have found a very special family

that will be here for you through

thick and thin. In Rick’s words, we

fight this fight together, not asking

for a handout, but just a hand up.

Welcome!

We also want to wish a very Happy

Birthday to all our members who are

celebrating a birthday this week.

We wish you blessings and a

wonderful day with the people you

love!

Alzheimer’s Association

Care Consultants

The Alzheimer's Association has a

very valuable program to help you

after you or a loved one has been

diagnosed with Alzheimer's

Disease. Care Consultants can

answer any questions you or your

family may have. They set up a

plan, tailored just for you, so you

can navigate through this new

journey. This is an ongoing

program, your Care Consultant is

always just a phone call away, to

answer any questions that may

come up. As you can imagine, the

understanding, encouragement,

and peace of mind this brings is

invaluable to all who are going

through this.

To find a Care Consultant in your

area, call the Alzheimer’s

Association at 1-800-272-3900