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Miracles do happen

In April of 2010, my hubby at 58, was told he had 15% shrinkage of the brain and the dr told me early onset. Get his affairs in order,4-5 years, he would have no memory. He prescribed donapril. I am avid researcher and started looking for everything I could to slow progress. He kept working even started a business on the side, worrying about us. I got a book and started him on all recommended vitamins. Then a friend sent me an article about coconut oil. I fixed coconut oil fudge. He had regressed & was a vegetable on wkends. 3 weeks later, he improved got up and has been going fine as long as he has his fudge. The VA took new pics in January & no shrinkage. OF COURSE we prayed without ceasing also. I think further research needs to be done in this area.

Brandi Shelton
Auberry, CA

Missing my best friend

My mom recently passed away on April 30th, she was on hospice and I am blessed that I got to take care of her at home and was there until her last breath. She suffered from Alzheimers and I (her daughter) was her primary caregiver. December of 2013 she suffered a heartattack and then in February she broke her hip which made this journey extremely hard. I learned how to transfer, how to change a bed with mom still in it, how to change and bathe, wash her hair, dress all while she was in bed. At this time we moved in with my son and his wife to help with the caregiving of my mom. I think of her every day, she was my best friend and as much as she needed me, I was the one who needed her more. Every day I used to tell her I love you more and more every day and her response was I loved you first because I had you first. Life is just so hard now without her here, I am so lonely and sad and cry every day because I miss not only my mother but my best friend and I miss her so very much. Love you, always and forever mom...

Dolores Landavazo
Albuquerque, NM

SHIRLEY AND BARBY

Caring for a person with dementia at home requires the dedication and talents of all members of a family, and each person has unique ways of contributing according to different circumstances.

When I think of my sister Barby and her role in our mother Shirley’s life,

I think of a kind and gentle woman who keeps Shirley connected to the outside world and all of us in the family connected to each other.

How does Barby do this? One of the actions which Shirley repeats many times daily in her dementia is to check for mail.

And Barby is the one who has been faithfully sending notes several times a week ever since the passing of our dad three years ago.

These colorful notes are always embellished with photos of the stuffed animals she calls her “kids” and brief, clever captions which Shirley can,

and does, read over and over. Shirley always looks forward to retrieving and opening her own mail and saves every note. When family visits, she shows them these treasures and happily reads them out loud and chuckles at them.

In addition, Barby (like our sisters Nancy and Bonnie!) provides many little gifts of knickknacks, decorations, or “stuffies” for Shirley to enjoy as she constantly rearranges where to put them every day. Because Barby lives out of state, she communicates regularly with Shirley by telephone, again connecting her to the outside world through activities which are routine for most of us. When Barby visits, she always takes Shirley for an outing where she can observe the world around her.

Not only does Barby concern herself for our mother, but she keeps our whole family connected through her weekly “Friday Thoughts” shared via email with her siblings, nieces, nephews, cousins, and extended family and friends. I can’t imagine Shirley’s life without Barby providing such wonderful moral support.

So thank you, dear Barby, for all that you do so quietly and often in the background. You are a treasure and dearly loved and appreciated by all of us.

Pat
Brockton, MA

My life with Bob

About 7 years ago it was brought to my attention that maybe I should have my husband checked for Alzheimer's. I knew he was having problems but I didn't want to admit it to myself. Took him in for testing and got the news. This terrible diesase was taking my love away from me. The first years weren't as bad as I thought they would be but as time goes on he continues on a downward spiral. It scares me to think of what will happen next. He doesn't drive very far. He is afraid of getting lost! At least he is aware of it! It is tough being the caregiver. His family has nothing do with him. My family lives too far away too help much. I work full time and worry about him. Keep us in your prayers as I feel the next few years are going to get rougher. I will never leave him and will do everything I can to take care of him. He is my life that is slowly disappearing.

Nancy Stouffer
Mitchellville, IA

Inside my sister Kim, her heart brings her peace. "My Heart and Soul"

My Heart and Soul

by Keleen Bailey

There is a place where some of us will journey, as we move

toward the end of our lives. It will feel frightening at first, but

that is because you don’t know what I know. I am here to

reassure you and share the meaning and purpose of your heart

and soul.

When our brain becomes old and tired and you try so hard to

do, say and think of everything we have ever known, we fight

with ourselves and struggle to remember. I am here to tell you,

there is no need to struggle. You are coming to a time of

contentment. Your outward appearance may deceive others,

but your heart and soul are unchanged.

Your mind will try to confuse you but your heart will soon be

your new reality. Memories will come from your heart now.

They will be just for you.

You are going on an amazing journey and will be free to

visit everything you have ever loved. Where do you want to go?

What do you want to see? Who do you want to talk and laugh

with?

You can visit beaches, forests, cities and foreign places.

Old friends and loved ones can take you back to your childhood.

And you wont have to fight your failing mind &

body to enjoy them. You will visit them with your heart.

God will gradually share more and more wonderful, beautiful

and peaceful thoughts with you. He will protect you as you

span your lifetime with your heart. Just imagine, free of

restraints. Free from worrying about money, time, and

obligations. Gone are fear, depression, aches and pains.

Your brain will try to make sense of it all but you will

transcend the restraints of your mind and begin to see what

your heart sees. Everything the heart sees is pure and good and

full of joy and peace. Contentment will fill your soul like you

have never known. And when you smile, others will know you

are at peace, and that you feel safe and loved.

Kim

Keleen Bailey
Aurora, OR

A Journey of Love

My husband was 59 when he was diagnosed with early onset alzheimers. We traveled the rough road of alzheimers for 10 years. During those 10 years I watched the man I loved fade away. He was never mean or angry which was good. He did lose his ability to carry on a conversation. I cared for him at home until his death 5 months ago. We had been married 49 years. At the end he had a cerebral hematoma and a craniotomy. He could not come back after that. After a week in the hospital I had no choice but to put him in a nursing home for the last 6 days of his life. That was so hard. I stayed with him and even slept in his bed with him. I don't think he ever really knew where he was. I feel so alone now. He was my life.

Sharon Ackerman
Twin Lake, MI

SHIRLEY AND NANCY

My mom, Shirley, is 90 with Alzheimer’s disease. She is still living in the house where she grew up, thanks to the efforts of my family. My sister Nancy has a very special place in Shirley’s life. She is amazing. She works for the post office; does many extra fund raising activities, and volunteers for many different places. I swear she has 36 hours in one of her days. And so many friends I have lost count.

Yet with all that she does, she takes such special and loving care of Shirley. Each weekend, she visits and brings Shirley something special and fun. Her generosity is unsurpassed. She spends quality time with Shirley, they watch TV, talk, play a game. She will always bring her a special treat to eat. On Holidays, she brings the meals to my mom’s house, so Shirley can celebrate the day, even though she does not really know what day it is. She always makes sure the house is clean.

These are physical things. Emotionally, she is always upbeat, vivacious, smiling, and laughing along with my mom. Her presence is such a bright spot in my mom’s life. When she makes my mom laugh, the joy fills the room. Her husband is there, also, adding his special touch to the visits.

Nancy’s heart is so full of love and giving it astounds me. When she smiles and laughs, her heart opens and the caring and tenderness flow all around. From her heart straight to Shirley’s. Even with Alzheimer’s, I know that, even if my mom cannot acknowledge these feelings on a conscious level, her mind, emotions, and heart are filled to overflowing with love.

Nancy will always include Shirley in the prep of the festivities. My mom could never just sit there. So, she and Nancy will do the things together, and my mom can feel once again that she is a normal and important part of things.

My own heart is full of love and admiration for my sister: Thanks, Nancy, I love you!!

b.a.roger
Pawtucket, RI

Treasure the Core that Remains

Treasure the core of your loved one that remains, not what's lost. My wife Susan continued to show love and care for family and nurses on her deathbed this March.

A QUARTER OF AN lNCH AT A TIME (A Song for Susan)

from CAREGIVER CAROLS: A MUSICAL, EMOTIONAL MEMOIR by Don Wendorf

She moved near me in college, to the house across from mine.

I knew at once this special girl was something rare and fine.

We slowly started strolling down a path of love sublime:

A quarter of an inch at a time

A quarter of an inch at a time

Through kids, careers, through fights and fears, we formed a wedded pair,

That knew each other deeply as we learned to give and share,

Ever stronger, growing closer, like two trees entwine:

A quarter of an inch at a time

A quarter of an inch at a time

Then came a bandit in the night, to rob me of my bride,

To slowly steal away her brain and personhood inside,

To make her serve a lengthy sentence, punishing no crime:

A quarter of an inch at a time

A quarter of an inch at a time

I watch a shade be slowly drawn to darken out her will.

I see her memory erode, from mountain down to hill.

I hear my singer drift off key, my poet stray off rhyme:

A quarter of an inch at a time

A quarter of an inch at a time

This dearest soul I've ever met, so caring, sweet and kind,

So lovely on the outside with as lovely heart and mind,

Now works to hold the fabric of her self as it unwinds:

A quarter of an inch at a time

A quarter of an inch at a time

As man and wife we've walked through life, down all its winding roads,

Up craggy peak, 'cross desert bleak, we've borne each other's loads.

There's just this final mountain now, together we will climb:

A quarter of an inch at a time

A quarter of an inch at a time

Dr. Don Wendorf
Birmingham, AL

my story from mississippi

Heres my story : my mother died at the age of 70 to Alzheimer's in 2008 my dad and my 4 sisters helped him for 10 yrs. of her being home I commend my father for all the work he did to keep her home we were there but we did the easy part by keeping her company and feeding her . my dad past away 2 years after her in 2010.it was an unexpected death. my husband lost his job in 2011 and he wanted to move to a state he lived in in the 70s so thinking we have to start over we will go somewhere we want to retire in . we sold everything. we moved 1300 miles away from family In Dec 2013 he was diagnosed with mild to moderate Alzheimer's. I am now in a state that I am not familiar with laws or city been here 1 year still learning area and he can no longer work. I knew something was not right but wrote it off as stress from losing his job of 29 yrs due to plant closing then moving . but words started not coming to him and he didn't want to leave my site in fear of forgetting his words he is 56 years old .I have no support here for all my family is in a different state we call always but not the same.it is a very hard disease to understand . there's times I think its the old husband for in 2 min the whole attitude changes and he is lost for words or people faces he is nice to strangers but can be very mean to me I don't get that part I need a support group for me and him he needs friends I need a break

Anonymous
gulfport, MS

SHIRLEY AND PAT

My eldest sister Pat is one of the most selfless, loving, and kindest people I know. She retired after 35 years of teaching, anticipating that my aging parents would soon need help. My mother is 90 with Alzheimer’s. Pat was helping my dad care for her at home; he passed away 3 years ago. Wanting to have my mom finish her days in the house she grew up in, Pat arranged things so that she could.

It is a tribute to her that my mom is still living a happy life. My brother and other sisters take their turns also, but Pat is the primary caregiver. Her husband is so caring and wonderful, also!

A week for Pat and Shirley: Pat at the house, bathing, feeding; getting mom ready to go to Day Care. My mom loves day care. She interacts with others, laughs, smiles, makes crafts; takes field trips! After day care she is dropped back off at home, where my brother takes over for the night.

Knitting class day. My mother used to crochet the most beautiful afghans. Her hands were always going. I cherish them. She cannot crochet any more, but, enjoys the class all the same. Thursday is Day Care again.

Fridays Pat brings Shirley for prayer service and music at a local church; then for lunch. Pat brings her to hear the Singing Policeman, the Irish Jiggers. I thank God every day for Pat, and how well she cares for my mom.

My mom’s Alzheimer’s is such that she can still function pretty well. She doesn’t remember her fun days. We try to enjoy our time with her as much as we can.

Pat tells me stories of how sometimes she is amazed at the things Shirley will come up with. Like listening to music in the car, Shirley said, “Where is that girl that was singing last week? I like her music!” Or all of a sudden giving her directions back to the house.

Thank you, Pat, for being such a patient and loving caretaker. I am proud and honored to be your sister!

b.a. roger
Pawtucket, RI
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