GATHERING UP THE COLORS OF MY LIFE

"The Hotel", Mom's new home

2009-01-07T09:00:00.004-06:00

We moved Mother on January 2, at the recommendation of her doctor, to the local Alzheimer's Assisted Living facility, which she refers to as "The Hotel".

I wasn't sure as to how this was really going to play out on that early morning as I was preparing the move and organizing the timing and boxing up her precious belongings from around her own bedroom and from throughout her home. My hopes were jetting here and there as I was chosing the right things in which to hopefully keep her memory fresh and revealing of times, people or places.

She was a bit anxious, as was I, and I'm sure with her sensitivity being aroused by my anxiety level, she knew something was up with me that morning. She asked me the same question she asks of me every morning, "Are you going anywhere and if you do, I want to go with you." I cautiously said to her that if and when I do decide, I would let her know.

So as she is getting dressed and asks of us our opinion of her choice of clothing for the day and if she looked nice, which of course, she looks beautiful everyday, but it's an acknowledgment of approval she seeks from us daily, I am gathering strength for the ride we are about to take to "The Hotel". The dreaded drive I will never forget.

I tell her it's time to go to town and for her to get her coat on and gather up her pocketbook, her circle the word books, which she takes everywhere we go and her caffiene free diet coke, that she managed to request at a weakened moment of thought to let her have that morning at 8:30 AM after her morning pancakes with maple syrup. A collision with a sugar rush just waiting to happen and I'm not sure if I am prepared for that, but I allowed it to happen.

She excitedly gets into the car and buckles up and immediately turns on the heater that is blowing cold air. I sit in silence with my thoughts of this being the last time she'll be "in control" of her surroundings. As we drive down the road to our destination, she says to me as she touches my arm, "I love you, thank you for taking me to town with you. I love going to town."

My heart is ripping and my stomach is inching it's way up to my throat that I can barely breath while holding back the tears. I keep my eyes focused on the road and making sure not to even give her a glance or I would surely loose my control. I just quietly said, "I love you too Momma."

That was the longest and yet the shortest drive I've ever made and I'm not sure how I got there other than by the grace of God guiding the steering wheel.

I pull up in front of "The Hotel" and she says to me that she will just stay in the car and wait for me. I panic for a second and then calmly ask her to come in with me and to bring all her items with her, that I needed her to be with me while I speak with someone inside. She questioned as to if it was all right to bring in her drink and her books of entertainment, as I refer to them as such anyway. I reassured her that it would be just fine for her to bring along all that she brought with her.

She doesn't recognize the place that she has frequented several times before or the people that greeted us at the door. My heart was relieved and yet troubled at the same time. I wanted her to remember. I wanted her to say, "Why are we here again?" or "What are we doing here, again?", but she didn't.

We were greeted at the door with a warm and loving "There you are! We were just talking about you and couldn't wait to see you." The director of the facility took her by the hand and led her away from me and to a room with others who were preoccupied in a project. She waved to me and I told her that I would be back later to check on her. She was telling everyone that she was glad to be there and that she loved them. I was lost. I was confused. I was alone.

I got back to the house to meet with my siblings who were instructed to be at the house to start gathering up and loading up the essentials for mother's new home at "The Hotel" while I had taken Mother to the facility.

I'm not sure how we managed to get everything loaded and packed and boxed up as well mark her clothing and pertinent items with her initials and room number. I felt like I was tossed back into time of when I went to summer camp and all my items had to be initialed and now I was doing this for my mother's items, but she won't be coming back home from camp.

My stomach is feeling like a volcano ready to erupt. My head is spinning from all the chaos and frustrations of emotions running rampart and trying to guard my siblings from the anguish of this event.

I remind myself that I have to be the brave one. I have to be the one to bear the brunt of explaining to mother why we are setting up an empty room with her own personal belongs of comfort and cherished items of momentos from her personal life. We worked as a team with a deadline to meet. We're racing against the clock, before she figures it all out?

That's what I really wanted. I wanted her to figure it out and catch us in the act, to stop us from all this madness we've been living for the past 20 months, but she can't and she won't. We load up, we drive the road to begin a new stage in our life and wondering how we ease her into this new world, a better world, a world of new friends who are just like her.

We drive in convoy and pull up to the side door of the facility in which we are let in by someone from the inside because it's guarded like Fort Knox. We walk down a corridor and enter into the community room and hear the loudest music with dancers entertaining the residents of the place and we proceed on to organize her new "hotel room" for permanent living.

We bought her new bedding for her own bed. We placed her items in such a way that represented her elegance and delicate manner. Soft colors with frilly touches and gentle softness everywhere, including her bathroom shower curtain with appliqued butterflies fluttering from the bottom. We arranged the graduation pictures of her most precious blessings, her grandchildren, on the wall beside her bed along with the 51 year old photo of her wedding day, with her husband of 50 years ever present with her, watching over her from their photo of their special day.

With her television all set to view from her bed or the coziness of her recliner chair wrapped in a soft blanket, and her cherished momentos from years past and present arranged on the entertainment center, we then hung up her delicate embroidered curtains that will let the sun shine in her room to wake her gently in the mornings. Just like her room at home, we did it the best we could.

Presentation time..........she enters the room and sees what we've done. She sits on the bed and the first thing she says, "I'm ready to go home now."

Silence covered the room like a hush from loud speaker. She grabbed my hand and asked me, "When can we go home?"

I sat beside her and looked into her eyes and held her frail hand and kissed it and told her that this was her new home now. She squeezed my hand and said, "I love you." Tears are choking my words but not spilling out yet. I explained to her that her doctor has recommended that she get the best care possible and that this is the place she needs to be in order to have the best care possible because we all want what is best for her and for her to continue to be healthy and happy. So then she asks if we will be coming back to her. I reassured her that yes, we will always be coming back to her and spending time with her here, in her "Hotel Room".

We each had our moments with her that day and we each have our recollection of that day to hold dear to us when we need to have her with us in our hearts. She stood at her window in her room and watched as we drove away, one by one, she waved to us and blew a kiss to each of us as we passed by her window. When I got home, sat in her bedroom and cried.

5 days later: It's still fresh in my heart and mind. I hope it always will be a memory that is never forgotten. But I know she's forgotten it. Since then she has broken her glasses, which we got repaired for her. I took her some magazines that she enjoys looking through even though she's looked at them more times that I can count, but she enjoys finding the needle in them, which is a game this particular magazing has to entertain folks. I also took her the valuable memories of yesterday to her. The annuals from the years she was a teacher at the local elementary school as well as her church directory with photos of members of her church. We fixed up her "Memory Photo Box" which is right outside their room by their door for the residents to recognize in order to find their own room. We placed pictures of the family at our Christmas gathering along with the emblem of a t-shirt commemorating the year she retired from teaching kindergarten after 32 years. We placed a slate board with her name written in chalk to greet the visitors when they come looking for her room. She gave us direction in which to place the objects and then bragged about how beautiful it was to everyone. She's settling in now and each day is a bit easier for us. We find great comfort in knowing that she's comfortable and happy and always glad to see us when we visit her. It feels good to be the "good guy" again and take her special gifts each time we visit and not be the "mean one that won't let her do this or do that anymore". Yep, it feels good to be on the good side of life with her again.

Can An Oil From the Coconut Tree Help Alzheimer’s?

2009-01-07T08:49:00.003-06:00

I'm a follower of Carol Bradley Bursack on Minding Our Elders website, as she is very knowledgeable as well as understanding of this disease and the caregiver's day-to-day life.
http://www.healthcentral.com/alzheimers/c/62/54266/coconut-alzheimer?ic=6002

Can An Oil From the Coconut Tree Help Alzheimer’s?
by Carol Bradley Bursack
Monday, January 05, 2009

Dr. Mary Newport, who has spent her practice taking care of babies, is also the wife of a man with early-onset Alzheimer's. Newport contacted me and asked if she could send me an article, along with some links to newspaper stories, about an oil found in the coconut tree and its effects on Alzheimer's disease. I said sure. I'm always happy to learn about new ideas in development.

When the article arrived, I was impressed by how promising this sounds and excited that there may be one more product, already available, that could protect brains and even help the quality of life of those with Alzheimer's disease.

Newport was researching two new drugs her husband was a candidate to try, when she found a third drug that sounded even better. While most Alzheimer's drugs aim toward slowing the progression of Alzheimer's, this third one actually showed memory improvement. With further research, Newport discovered the medication's primary ingredient was an oil composed of medium chain triglycerides, known as MCT oil.

With further research, Newport found that non-hydrogenated coconut oil is more than 60 percent MCT oil, and this new medication derived its MCT oil from the coconut tree. We've read for years that hydrogenated coconut oil is bad for us. It was once used in many packaged foods, but because of heart-health considerations, the oil has been often been replaced with healthier fats. However, non-hydrogenated oil is a whole different ball game.

Newport's published article, which can be found on her new Web site at http://coconutketones.com, will tell you all about the science behind the MCI oil and its relationship to Alzheimer's. There are also links to several newspaper articles written about her and her research on MCT oil. She is also beginning a blog, which may be up and running by the time you read this. If it's not, it will be soon. The blog link is also on the Web site.

The featured article, titled "What If There Was a Cure for Alzheimer's Disease...and No One Knew?," is written with the knowledge that not everyone reading it is a scientist. I think most people will be drawn into the story of this couple and the quest of this doctor to help her husband and others with Alzheimer's disease.

MCT oil is certainly something to watch. This is a product that is available now. It helped Newport's husband recover some functions he had lost - at least temporarily. How much more can it do? Time and studies will tell. However, Newport is enough of a believer that she is aggressively plowing forward with her efforts to get the word out. We can hope she's onto something huge.

To learn more about Carol, please go to www.mindingourelders.com or www.mindingoureldersblogs.com.

WHAT IF THERE WAS A CURE FOR ALZHEIMER’S DISEASE AND NO ONE KNEW?
A Case Study by Dr. Mary Newport July 22, 2008
There is a growing epidemic of obesity, type II diabetes, cardiovascular disease, and predictions that 15,000,000 people in the United States alone will have Alzheimer’s
Disease by the year 2050.
In 2001, Dr. Richard L. Veech of the NIH, and others, published an article entitled, “Ketone
bodies, potential therapeutic uses.”1 In 2003, George F. Cahill, Jr. and Richard Veech authored, “Ketoacids? Good Medicine?”2 and in 2004, Richard Veech published a review of the therapeutic implications of ketone bodies.
3 These articles are not found in journals that the average physician would read, much less the lay public. Unless you are researching
the topic, it is unlikely that you would ever randomly come across this information.

http://www.coconutketones.com/whatifcure.pdf

Dr.

If you want to chat with some wonderful people who can help

2008-12-31T05:49:00.001-06:00

I recieved this message at AlzTalk.org from Marcus this morning:

Hey Rainbow Painter...Trying to get more people to chat...
Alzheimer's disease and dementia chat rooms for caregivers and patients.
Register now for our Alzheimer's Chatroom.
Please Note: Registration to our Alzheimer's chatrooms is separate from ALZTalk.org registration.

CHATROOM SCHEDULE
Alzheimer's Room
8am EST, 8pm EST
7am CST, 7pm CST
6am MST, 6pm MST
5am PST, 5pm PST DASNI Chatroom
3pm EST, 9pm EST, 11pm EST
2pm CST, 8pm CST, 10pm CST
1pm MST, 7pm MST, 9pm MST
12pm PST, 6pm PST, 8pm PST
Dr. Mitch Slutzky
Every First Thursday of the Month
@ 9pm EST, 8pm CST, 7pm MST, 6pm PST Kids & Teen Room
Every Tuesday
@ 8pm EST, 7pm CST, 6pm MST, 5pm PST
Happy New Year! HUGS! Marcus

IF TOMMORROW NEVER COMES

2008-11-07T09:21:00.005-06:00

If I knew it would be the last time

That I'd see you fall asleep,

I would tuck you in more tightly,

And pray the Lord your soul to keep.

If I knew it would be the last time

That I'd see you walk out the door,

I would give you a hug and kiss,

And call you back for one more.

If I knew it would be the last time

I'd hear your voice lifted up in praise,

I would video tape each action and word,

So I could play them back day after day.

If I knew it would be the last time,

I could spare an extra minute or two,

To stop and say "I love you,"

Instead of assuming you would know I do.

But just in case I might be wrong,

And today is all I get,

I'd like to say how much I love you,

And I hope we never forget.

Tomorrow is not promised to anyone,

Young or old alike,

And today may be the last chance

You get to hold your loved one tight.

So if you're waiting for tomorrow,

Why not do it today?

For if tomorrow never comes,

You'll surely regret the day.

That you didn't take that extra time

For a smile, a hug, or a kiss,

And you were too busy to grant someone

What turned out to be their one last wish.

So hold your loved ones close today,

And whisper in their ear,

That you love them very much, and

You'll always hold them dear.

Take time to say "I'm sorry,"

"Please forgive me," "thank you" or "it's okay".

And if tomorrow never comes,

You'll have no regrets about today.

If Tomorrow never comes - Martin Stosch

U.S. Postal Service Issues Nation's First Alzheimer's Awareness Stamp

2008-10-23T17:34:00.004-05:00

U.S. Postal Service Issues Nation's First Alzheimer's Awareness Stamp

Whether by way of a holiday card to an old friend or a letter to a serviceman overseas, the Alzheimer's disease cause will now be seen and talked about around the globe as the U.S. Postal Service has issued the first Alzheimer's Awareness stamp. According to the Postal Service, 65 million 42-cent stamps have been issued "to raise awareness of issues surrounding the dreadful disease and to draw attention to the importance of the caregiver." The stamp itself is a poignant silhouette of a caregiver embracing a loved one, and is intended to promote care, support and research of the brain disorder. In the words of the artist who designed the stamp, Matt Mahurin, "I wanted to have a balance between the kindness of caregivers and the sadness of the disease, but also the message of hope that was indicated in making a stamp to bring attention to the disease." Eric Hall, AFA's Chief Executive Officer, shares his own reflection on the ability of the stamp to break through the silence surrounding Alzheimer's disease on Health Central.

Alzheimer's Foundation of America

http://www.healthcentral.com/alzheimers/c/7494/45225/alzheimer-stamp

The moment was all hers......

2008-10-03T15:49:00.002-05:00

On September 27, 2008 I participated in the annual Alzheimer's Memory Walk in honor of my Mother and also my Uncle Lyle, Mom's brother. This was an occasion in which I along with my sister and a wonderful team of 11+ members from Estill Springs, TN raised donations to benefit the education and research for a cure, as well as help out the local chapter to provide for the needs to us in the community in various ways.
This was my first experience in being involved in such an event and I have to say, I was amazed at the support and dedication we have in our community.

I am proud to be a part of a community that strives to help others and support in the needs of all. Our little town collected the most donations for this Memory Walk. The leader of our team along with a few others were gracious in wearing buttons with a picture of our Mom, for all who came to participate in this event.

Her reaction was very touching to me as we entered into the mass of 400+ participants. I wasn't sure if she would be overwhelmed, withdrawn, nervous or just express her discomfort of being surrounded by so many friends and admirers. I saw a spark of the Mother I know as she was greeted and hugged by so many. She was in her realm. She was "Queen for the Day" and loving every minute of it. Friends, neighbors, colleagues she worked with as a Kindergarten teacher in the local school, the city and county Mayors and elected officials were all there.....walking in honor of Marilyn. Yep, she stood tall, I saw the smile I remembered seeing day after day growing up, the light in her eyes shown through again and she was back! for just that brief moment in time.

She walked proudly helping our team to carry the Memory Walk banner since Estill Springs was the lead team to bring in the most donations. She WALKED the full track around the football field of the local high school!I kept telling her how proud I was of her accomplishing such a walk. She smiled at me and said "Thank you.".

Our Mom in the middle wearing black
helping to carry the banner of the 2008 Memory Walk.

My husband took pictures of this memorable event. I got them back just today. I showed them to Mother today. She didn't remember this occasion. But she was happy to see the pictures. I'll keep them in a special album for her. We'll set the album on the table beside her place in the living room so that family and friends can share them and the moment with her.

She may not remember the day of this event, but her soul will reflect the time she came back to us, even if just for that brief moment. That's what we do around here, we live in the moment.

Caring for the Elderly NYTimes List

2008-08-09T13:57:00.003-05:00

Caring for the Elderly
By JANE GROSS
Published: July 24, 2008

What follows are online resources that may be of use to the elderly and their adult children or other caregivers. The list is both long and likely incomplete. We welcome suggestions, additions and even subtractions. You may send them to newoldage@nytimes.com.

http://www.nytimes.com/ref/health/noa_resources.html

I'm a supporter of many of these sites listed by the New York Times and found them to be very helpful in my search for answers, support and education. I'm pleased to share this news worthy piece of information by Jane Gross in hopes to help others on the same journey I am traveling.

She Taught Me Everything I Know

2008-07-29T18:16:00.002-05:00

"She taught me everything I know." These are the words that my mother said to her doctor today as he was filling out orders for her to be admitted into an Alzheimer's Assisted Living facility. He raised his head from the riddle of questions of the required forms and looked at me and I returned a look with raised eyebrows.

I looked at Mother as she was sitting on the side of the patient bed in the small examination room, swinging her legs dangling over the sides, like a child would do and she smiled at me. My world as I knew it immediately did a 180 on me and I struggled with the imbalance of this topsy-turvy event.

This particular day was like every other monthly visit to her doctor for her routine check up, except for one thing......I'm getting ready to place her in another world of confusion. As I heard these words expressed out loud of how she sees "who I am", I had to really come to the realization that she's changed her role in her world. She wishes to no longer be the parent or is it that she wants to be in a place where she can learn more vicariously through me? Now I am her teacher, her mentor, her parent. I have become the mirror of her soul as see looks up to me, depending on me for her needs through my guidance and reassurance and security to get her through her days and nights.

Well, she will be a very hard act to follow, being such a role model of a nurturing mother and wife, a scholar and master of education. She devoted her career of 32 years teaching little ones of five years old and never once did she complain of her days. So no Mother, "You have taught me everything I know and I only hope to be able to follow in your footsteps on this journey with you."

We're On The Move To End Alzheimer's

2008-07-22T12:50:00.002-05:00

In honor of my mother and her brother, my uncle, who both are afflicted with Alzheimer's Disease in different stages, I will be participating in a Memory Walk for our local chapter of the Alzheimer's Association on September 27, 2008.

My hopes are to awaken many to the facts of this disease and the urgency of support in funding education and resources as well as much needed research for the cause and cure of Alzheimer's.

Today an estimated 5 million Americans are living with Alzheimer’s. And with 78 million baby boomers approaching the age of greatest risk for this fatal disease, the need to find a cure is more urgent than ever.

This year, to support individuals and families living with the disease – as well as those who may be affected in the future – I’m participating in the Alzheimer's Association Memory Walk® to raise funds and awareness for Alzheimer’s disease.

The Alzheimer's Association is the leading voluntary health organization in Alzheimer care, support and research, and funds I raise will go directly toward supporting their efforts.

I know I can make a difference with your support. Will you consider making a donation? It’s easy to give online by following the link below.

Thank you in advance for your time and generosity – together, we can help to end Alzheimer’s!

Memory Walk is nationally presented by Genworth Financial.

Follow This Link to visit my personal web page and help me in my efforts to support Alzheimer's Association Mid South Chapter

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If the above link does not work please copy and paste the following into your browser:
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Thank you for your support.

The Time Has Come

2008-07-09T14:36:00.003-05:00

It's been a long 15 months since the death of my father and taking over the role as a caregiver to my ailing mother who is afflicted with Alzheimer's Disease. The road is not an easy one and I'm sure it will be a continual experience of ups an downs, but after personally getting away for a week of much needed rest and relaxation, taking the time to clear my head and find some peace of heart as well as mind over this matter, we, my siblings and I, are searching out alternative living arrangements for our Mother this weekend.

Our goal is to find a place that will give her a much better quality of life for her. One that she can feel welcomed and loved as well as nurtured through the progression of this disease that has robbed her memories of a life filled with hopes and dreams, joys and encouragement for all whom she has touched during her life as a wife, mother, grandmother and teacher and friend to so many.

I am in hopes of assurance for her, where she can feel secure and enjoy those who will bond with her in her state of confusion and restlessness. I want a place for her where when I come to visit her, the light is shining in her eyes and she is smiling again with joy of her new home and friends.

No this is not an easy decision for us, but this is not about "us". It's about her. We've come to the realization that we can no longer give her the kind of nurturing and care that she is reaching out for because we ourselves are spent and drained and weary from this task. It's so painful to be asked, "What's your name?", "Will you live with me so I won't be alone?" and my answer is always the same, "Yes Mom, I'm your daughter and yes, I am living with you."

My compassion is draining due to the daily routine of questions and insecurities she carries with her each morning, but it's still there, just not as strong as it was 15 months ago. My love for her will always reach the surface, but will it become resentment on down the road? I don't want it to become that feeling, not ever, but it's difficult to struggle with it day in and day out.

So yes Mom, we're going to find you that place where you can be secure, be cared for and be given a quality of life you are so very much deserving of in your days of living in the world of "I can't remember". Just know that it's from the deepest love that we have for you that we have come to this decision. I've been missing Mom for quite some time now but I'll always love her.

If you have a loved one that is afflicted with this disease, please help in finding a cure by just clicking the purple ribbon on the right side of my blog page please. A donation of $10 will be given to help find a cure. All you have to do is share the word. Thank you and many blessings to you and yours.

Promising drug fights Alzheimer's in three ways

2008-06-11T13:45:00.000-05:00

WASHINGTON - A type of drug that may offer promise in treating Alzheimer's disease works in three ways to fight the formation of "plaques" in the brain that are a hallmark of the ailment, scientists said on Wednesday.

The researchers looked at a kind of drug called a gamma-secretase modulator, or GSM, now being tested to see if it slows Alzheimer's disease progression.

One GSM drug now being tested in people with Alzheimer's is Myriad Genetics's Flurizan, also called tarenflurbil.

To read more of this new study:

http://www.msnbc.msn.com/id/25100491/

The Future

2008-03-15T19:55:00.002-05:00

I am posting this blog from a sweet lady named Mary Canada from ALZTalk.org.

The Future

6:38 AM on Mar. 13, 2008

Once in awhile I'll let myself think about the future, and what it's going to be like, if the cure doesn't arrive soon. I've chatted to enough caregivers over the past two years, and heard what their loved ones are going through....to know what exactly is ahead for me and many others, if the cure isn't soon here. A friend sent me this lovely website that I'd like to share with you.

http://www.parentswish.com

http://www.alzinfo.org/alztalk/blog_entry.php?user=MaryCanada&blogentry_id=17

**this is the very reason why I am committed to being the caregiver to my Mother. Many blessing to all who have this path to walk before them.

With much love and respect,

Rainbow

AGRESSION FUELS THE FIRE, COMPASSION CALMS THE SOUL

2008-03-15T11:32:00.000-05:00

EVERYDAY CHALLENGES

I've only been a caregiver to my Mother since the death of my father last April of 2007. My world, as I knew it, was immediately turned topsy turvy after the family service and tending to the aftermath of such an event.

In today's society we all have stress levels in which we are battling just to survive and live a productive life. Since my life has changed directions in the middle of my journey, I have had to learn to adjust to the loss of a father and face the unknown of this disease that has inflicted my Mother and change my life of living from another state, leaving behind my husband, who is also a caregiver to his own ailing father, as well as keep my own sanity living in this situation. Mother became aggressive, verbally abusive after the funeral of her husband of 50 years, and this was not my Mother's nature as I knew her to be while growing up in such a loving and nurturing home.

I panicked, became depressed, angry, furious at times and worn down from the events that were spinning so fast that I felt like I was lost in the world and no one was caring about it. Making the decisions and reorganizing the life of someone I love so dearly and thought would always be there for me when I needed comfort and care is, at best to say, an adjustment.

The tables of time have turned on me, throwing me into a tailspin of chaos and fear of the changes in my life as I knew. When I would be impatient, she would become nervous. When I would be angry and frustrated, she would show the same emotions and lash out at me. This was not working well for me or her. I called in re-enforcement of my siblings to help us out. I would call to tell them and explain to them of "our day" and ask for help with whatever decisions needed to be made at the time. As the days of adjustment were sinking in and settling into place, I was able to research and concentrate more on how I can cope and deal with our lives. So now, when Mother shows her aggressions, I take her hand gently, look her straight in the eyes and tell her with tears and compassion, "I love you, Mom". Then we would both calm down from the frustrations that were attacking us. I could then begin to breathe and relax with her.

You see, I had to come to the understanding, through much reading and gleaning from resources of this afflicting and degenerating disease, that she also is feeling those same feelings that I was experiencing, but she doesn't understand why or how to deal with them. She can't show tears of grief or laughter. All of her compassionate emotions are hidden deep within her soul, but they are there, because she is that wonderful and loving Mother that I remember her as a young child. It is now my duty and responsibility, with love and compassion, to not only see to her physical needs but to also feed her soul.

It's a learning experience and a never ending one for me. Day to day tasks are challenging, emotions of the days are always changing as well, but I am becoming more knowledgeable and understanding of these changes and knowing that each day is a "New Day" and learning that education and love along with compassion conquers all fear and darkness of the unknown.

Rainbow

Compassion and Lots of Understanding

2008-03-15T11:06:00.001-05:00

Compassion and Lots of Understanding

If anyone out there is care giver of a family member with an

irreversible affliction of Alzheimer's disease, I'd like to

share some words of compassion from the other side of the fence.

Please....be patient with me.

My disease is beyond my control, accept me the way I am.

I still have something to offer you.

Talk with and listen to me.

I can't always answer, but I do understand the tone of your voice.

Because I cannot remember, does not mean that I am dumb.

Be kind to me.

Your kindness may be the highlight of my day.

Don't hurry me.

Each day I struggle to keep up and understand.

Consider my feelings.

I am sensitive to shame, embarrassment, failure,

fear and uncertainty.

Please don't ignore me.

Treat me with dignity.

I am not less of a person because I have Alzheimer's disease.

Remember my past.

Remind me of my successes, values and worth.

Remember my present.

Let me do what I can do.

Break down activities into steps I can handle.

I respond to encouragement.

Remember my future.

I need hope for tomorrow.

Pray for me.

Your presence shows true compassion.

I too am dealing with the struggles of a love one with this disease, my mother.
She was a scholar in education and taught for 32 years. Now she spends her
days circling the words of books and watching game shows.

She was always so cheerful, giggling and laughing, baking and cooking.

She doesn't laugh with us anymore and she's not very hungry even at the best of times.

She was our cheerleader, mentor, best friend and my confidant. Her conversations would
be lively and fun with teasing and wit. So now she gets frustrated and confused,
because she can't comprehend our conversations anymore.

She was secure, fearless and confidant and taught us her strength. Now she fears
being alone and lost. She's our shadow now following in our footsteps.

Her eyes would gleam and shine with joy when we would enter her presence.
The light in those eyes are fading and dimming as we have to tell her
who we are by name. Tears fill my heart and I swallow hard to not let them
show when she can't remember that I'm her daughter or if I have to help her
recall the names of her grandchildren that she adored and cherished with so much love.

She can't remember if Daddy (who passed away in April of this year) ever
hugged her or said that he loved her. I smile and tell her, "Yes, Daddy would
hug you, kiss you and dance around the room with you when you were near him."
All she could say was that she was glad to know this because she liked to be hugged.

I miss my mom, the one I know so well. Now I'm learning to love the mom she is to me today, more and more every day and I'll keep with me the cherished memories of the mom she used to be and share them with her each and every day.

Rainbow