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Alzheimer’s Disease – Like The Heart Of An Onion

Alzheimer’s Disease – Like The Heart Of An Onion

onionBy Lori La Bey found of Alzheimer’s Speaks

This is a story I wrote about a visit with my Mother with Alzheimer’s years ago.

She is now passed and I do miss her so.

mom pic in the heart of the onionI went to visit my Mother today at Maplewood Care Center, her nursing home.  It’s hard to believe she has been there since 2001, and that she asked to move into the nursing home.  Who would have thought?  Surely not me, Mom was always going to live with us. Nine years in the nursing home has been an incredible journey of friendship, love, and awakening.    Never in my wildest dreams would I have imagined my Mother’s path would change my career and my way of life, but it did and I can’t thank her enough for what she has taught me through her illness.

mcdonalds hot fudge sundaeToday when I went to visit Mom it was just prior to supper time.  I decided to pick up a Hot Fudge Sundae from Mc Donald’s for her anyways.  She loves her Sundaes from McDonald’s chipped teeth and all.  As I scooped the ice cream with the black plastic spoon that came with the sundae, I was anticipating Mom’s smile once her lips felt the cold.  Instead, Mom’s lips popped open and closed around the spoon.  I gently pulled the spoon out from the lips that trapped it as the ice cream melted in her mouth.  My wrist soon turned to scoop another serving of hot fudge, and I saw Mom winkle her face like crisp dollar bill being scrunched in a powerful hand.   Today It was evident the cold was causing her pain, yet she wanted more.  I guess the fudge out weighted the pain, for today anyways.

After dessert was gone we went onto the main course.  Chow mien, peas and carrots, a whipped fruit salad, all per aide.  The baby food texture does nothing for my pallet, but it works well for Mom and she doesn’t seem to mine.  Who am I to complain anyways, especially when I know she can’t chew with her dilapidated teeth.  As I chatted with Mom and the staff I noticed one of my favorite people was missing from the dining room.

“Where’s  Lillian?” I asked.

“Oh she passed about two weeks ago.” One of the staff said in a soft compassionate voice.  My heart sunk to my toes.  I hadn’t seen Lillian in the past month between being out of town and visiting Mom later at night when she was in her room.  I felt horrible I hadn’t looked for Lillian when I was there.  My mind raced knowing there was no way of going back in time. I will miss Lillian, she made my heart smile.let_my_heart_smile_through_my_eyes_quoteLillian had befriended my Mother, watching and checking up on her throughout the years.  When I would come to visit Mom, Lillian would scurry over, grab my hand, look deep into my eyes, and share stories with me. Her soft loving smile positioned on her aged and wrinkled face was one of my favorite things to see.  Some days Lillian would sit and visit with Mom and me, other times she thought I was her daughter.  On these occasions she would grab my hand, lead me off to a private setting where we could sit next to each other holding hands and sharing stories uninterrupted.  Lillian’s crystal blue eyes could calm a tornado and her soft smile framed a strong and amazing woman who was a gift to know.  It was just in the last year Lillian started to fail physically losing her balance; needing a walker; which many times she would forget was hers.  Lillian was the elder, the wise one on the floor loving and caring for those around her until the day she died. If I’m not mistaken, she recently turned 104 years old.  I would have loved to have met her family, but it’s not likely now.  I will miss her beautiful crystal blues eyes, her soft fail hands that would reach for mine, and her compassionate voice like that of an angel.

Losing Lillian has made me realize, Mom could go any time.  Mentally, I’ve known this, but the loss of Lillian made the thought sink into every pour of my being.  One day, there may be no reason to go to the nursing home.  Mom will not be waiting for me.  She will not surprise me with subtle facial expressions, or a goofy comment, or a little giggle that lightens my spirit.  What in the world will I do when the time comes for Mom to pass?

I know many think I should be relieved as I am released from this “Caregiver Role.”  They view this journey I’ve been on with my Mother as a burden.  But truth be told, I will deeply miss her.  I will miss that shell of a body that is all many people see.  For me there is so much more to Mom than her shell.  I guess I see Alzheimer’s disease like peeling an onion.  There are many layers and like the heart of the onion the soul of a person is always in the middle and never dies first.

For More Information on Dementia and Caregiving Click Below.

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Alzheimer’s Speaks Radio – Join Us to Discuss Dementia/Care Farms Plus The Author Of “Don’t Leave Yet”

Alzheimer’s Speaks Radio -Tuesday June 23rd, 2015

11am EST, 10am CST, 9am MST,  8am PST and 4pm London Time

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Join Us to Discuss Dementia/Care Farms Plus The Author Of “Don’t Leave Yet”

Welcome to Alzheimer’s Speaks Radio.  We are thrilled you are going to join us. Please know on all of our shows we love to hear from our listeners. So feel free to call in or use the chat box to talk to us.

Today we have Maarten Fischer a Dutch Native who moved to Montana and will explain the concept of Dementia/Care Farms. Maarten has been involved in “Multifunctional Agriculture,” including “Care Farms.” In the Netherlands they are the largest sources of day programs with over 1500 farms empowering  30.000 clients on an annually.   Contact Maarten via:  Website or call  406-752-3697

Also joining the conversation will be Eilon Caspi Ph.D., Gerontologist & Dementia Behavior Specialist. Check his Website or his blog

Our second guest will be Constance Hanstedt author of “Don’t Leave Yet, How My Mother’s Alzheimer’s Opened My Heart,” which was named a finalist in the National Indie Excellence Awards for memoir. Contact Constance

Website        Facebook    

For More Resources on Dementia and Caregiving go to Alzheimer’s Speaks.

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Join Us For Dementia Chats Tuesday

Join Us For Dementia Chats Tuesday

DC_HQ_062714_solidyellow2 color photosDementia Chats™ was created with the intention to educate people living with dementia; their care partners both family and friends as well as professionals and advocates. Our Experts are those diagnosed with dementia.

Tuesday June 9th, 2015 – 3pm EST, 2pm CST, 1pm MST, 12pm PST and 8am London Time

Click Here To Enter

To Learn More About Dementia Chats or to Watch Past Webinars

Join an Alzheimer’s disease clinical trial today. No insurance is needed to participate.

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The ABC’s of Dementia Awareness, Care and Support

The ABC’s of Dementia Awareness, Care and Support

Live on Alzheimer’s Speaks Radio 

060915 ABC of ALz Care Singing in the Rain AuthorsTuesday 11am EST, 10am CST, 9am MST 8am PST and 4pm London time.

ABC approach pic of maryOur first guest will be Mary Crescenzo, who provides professional development training for staff in the implementation of quality arts programming with those with Alzheimer’s, and facilitates for caregivers. Mary is also an award winning playwright whose drama, Planet A, about Alzheimer’s, has been staged in New York throughout the U.S..

Contact Mary via Facebook at: ABC Approach to Alzheimer’s Awareness and Care Through the Arts

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singing int he rain authors pic togetherOur second guests will be Vicky Ruppert cared for her husband for 19 years with Alzheimer’s of the familial variety (APOE4)and Ann Henderberg who cared for her husband with Lewy body disease for 7 years. Together they joined forces to support one another and have written a book titled, “Singing In The Rain: Weathering The Storm of Dementia With Humor, Love, & Patience.

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The book is  is available on

Amazon

or their website

Check Facebook for Victoria Ruppert

Alzheimer’s Speaks Radio is proud to raise all voices regarding dementia.  If you have an opinion we would love to hear it.  Call in and join the conversation or use your chat box to communicate with us.  If you think you should be a guest contact Lori La Bey.

Check out Alzheimer’s Speaks for Dementia and Caregiving

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Help For Struggling Caregivers

Help For Struggling Caregivers

Click_below042115 ASR Michelle ChaffeeAlzheimer’s Speaks Radio

Tuesday April 28th, 2015

11am EST, 10am CST, 9am MST, 8am PST and 4pm London Time

Alzheimer’s Speaks Radio was created to have honest discussions and real needs and resources for those dealing with dementia.  Please feel free to call into the show (714) 364-4757)  or use the chat box to communicate with us during the live show.  If you can’t  make the live show we would still love to hear your thoughts about the topic.

Today we have patient advocate, Michelle Chaffee from Minneapolis, MN with us.  It was through Michelle’s own family medical crisis along with her professional background that she created Alska.  Michelle understood the needs of caregivers across the spectrum of care and saw the gaps in the care system, which lead to the creation of a remarkable tool that supports and empowers individuals and optimizes delivery of care.  Come join us and learn how this tool might be able to assist you.

For more information on dementia and caregiving

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A Gift Given By One Of Our Heroes Living & Dying With Dementia – Dena Dotson

A Gift Given By One Of Our Heroes Living & Dying With Dementia 

Tuesday at 11am EST, 10am CST, 9am MST, 8am PST and 4pm London Time

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Alzheimer’s Speaks was sadden with the loss of one of it’s experts living with dementia.  On April 1st, 2015, Dena Dotson planned to leave this world in hopes of a better life.  Although everyone may not agree with her decision, it is important for us to honor her work and advocacy to improve the lives of others living with dementia. We will not judge her decision but accept the fact that none of us can really know what decision we would make if to walk in her shoes.

Today Dena no longer suffers from the symptoms of dementia which made her life unbearable. Today we  celebrate the gifts she gave us while here and grieve her loss together as a community.

Please note this is a replay so you won’t be able to call in today.

For more information on dementia and caregiving

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Beautiful Song on Early Onset Dementia – You Are Here

A Beautiful Song on Early Onset Dementia –

“You Are Here”

Please Share with others.

For More Information on Dementia and Caregiving

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