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Alzheimer's Disease: Lessons Learned in Westchester County, New York

By
Home Builder with Women of Westchester Working Together

 

As an eldercare consultant I got my feet wet working at our local Alzheimer's Association here in Westchester County, New York. In 1986 I knew little about the "forgetting disease."  When I was hired to start a telephone support program for Alzheimer's caregivers, I was handed a copy of "The Thirty Six Hour Day," the go to book of Alzheimer's Disease, and told to read it. And so I started. Since that time, there are many significant lessons I've learned. Five of them I would like to share with you:

 

1. Not all forgetting is Alzheimer's Disease

A person can have certain vitamin deficiencies, medication interactions, hypothyroidism, depression, an infection or dehydration. Any of these can present with confusion and/or memory loss.

 

2. Alzheimer's Disease is a form of dementia, but all dementia is not Alzheimer's Disease

Yes, a confusing statement. Alzheimer's Disease is a form of dementia. Dementia is an umbrella term. There are many different types of dementia: vascular, Lewy Body, frontal lobe, Pick's Disease. They all have forgetfulness as their common symptom, but each disease has it's unique manifestations.

 

3. Don't put people with Alzheimer's Disease back in school

Please don't ask them; "What's my name?"  "Mom, what did you have for breakfast?" "Dad, what kind of work did you do?"  Asking them questions is not going to strengthen their minds or make the disease go away.  Instead, these questions serve as a source of frustration, embarrassment and humiliation.

 

4. Tell lies

Yes, sometimes you have to lie. I call them "fiblets." And I tell these lies to preserve the safety of an individual. Take Anna. She was forgetting to turn off her stove. I had the super come into her apartment and shut off the gas line. I told Anna there was a leak outside and until the gas leak was fixed, she would not be able to use her stove. She was safe. That was all I cared about. I bought her an automatic electric kettle and arranged for Meals on Wheels.

 

5. Don't try to change the reality of a person with Alzheimer's Disease.

This is an irrational disease and you can't change it using logic or reason. If a spouse thinks they are living in Norfolk, Virginia where they were born, and they are really living in Rye, New York, don't correct them.  Enter their world of reality. Yes, it is bittersweet, but the road only goes in one direction.


My journey as an elder care consultant, started many moons ago at the Alzheimer's Association of Westcheser County. It continues today. Hopefully, in understanding a little more about the disease, it will help you to lessen the stress of caring.

 


Miriam Zucker is a Certified Professional Geriatric Care Manager and elder care consultant. She is the founder of Directions in Aging (www.directionsinaging.com) based in New Rochelle, New York. She also serves on the faculty of the Brookdale Center for HealthyAging and Longevity of Hunter College in New York City.

Debbie Gartner
The Flooring Girl - White Plains, NY
The Flooring Girl & Blog Stylist -Dynamo Marketers

Miriam - Wow, this is an excellent post.  I love your kind way of telling a fiblet. You are so right...it's all about looking out for the individual and that is true care and compassion.

I suggested this, not only because I think it's great, but also because I think more people need to see this.

Apr 09, 2012 11:56 AM
Captain Wayne - Rowlett Real Estate School
Rowlett Real Estate School - Panama City, FL
Rowlett Real Estate School / Owner and Instructor

We are very familiar with Alzheimer's in our family. It can be very stressful on the family, especially if it is not understood. Great Information!

Apr 09, 2012 09:16 PM
Cindy Jones
Integrity Real Estate Group - Woodbridge, VA
Pentagon, Fort Belvoir & Quantico Real Estate News

Miriam-my mother had Alzheimers and watching her downward progession through the disease was very painful.  She ended up in a special care facility for Alzheimers patients and was well taken care of.  She passed away two years ago and I still miss her.

Apr 09, 2012 09:33 PM
Barbara Todaro
RE/MAX Executive Realty - Happily Retired - Franklin, MA
Previously Affiliated with The Todaro Team

Good morning, Miriam....I'm here from Debbie's reblog.... my mother will be 90 this year and is starting to show some signs of this disease.... she's physically healthy and active.... I read as much as I can about this disease.

Apr 09, 2012 09:51 PM
Women of Westchester Working Together
Women of Westchester Working Together - West Harrison, NY
Women helping Women get ahead

Great advice Miriam.  As you know, I just lost recently lost my father.  One of the things I miss (I NEVER thought I would say this) is the unpredictable "trips" we might take.  At first it was a difficult adjustment, but visiting with Daddy in his world was so much easier on him.  He was talkative and engaged, what difference did it make if it was current?  And sometimes I learned something I never knew, but he remembered it clear as a bell.  We were lucky that he always knew who we were, but his sense of reality was a learning opportunity for us all.

Thank you for such important information Miriam.  Keep up the good work!

Donna LoPinto 

Apr 10, 2012 11:52 AM
Chris Smith
Re/Max Chay Realty Inc., Brokerage - New Tecumseth, ON
South Simcoe, Caledon, King, Orangeville Real Esta

Miriam, this is a great resource for people who are unaware how to talk to people suffering from dementia.  I thought I was educated on the topic, but I learned a lot today.

Apr 12, 2012 03:13 AM
Women of Westchester Working Together
Women of Westchester Working Together - West Harrison, NY
Women helping Women get ahead

Miriam ~ what a bitter sweet joy it was to read your post.  My grandmother passed away last March in "Grandma lockup" as I called her Alzheimers facility.  My mom's mom had wandered and declined slowly over 11 years and passed away at 93.  She'd grieved over and over about the passing of my grandfather, until we simply told her he was at home, "waiting for her to get better and come home."  Those little "white lies" were guilt ridden, but you've made me feel better.  Now, we're navigating my Dad's demise with this disease and I'll feel better putting him at ease as necessary. Thank you SOOO much for sharing this post with us!

~ Hillary

Women of Westchester

servproofscarsdalemountvernon.com

 

Apr 14, 2012 02:09 AM
Kathy Streib
Cypress, TX
Home Stager/Redesign

Hi Miriam- This hits home.  While my mother did not have Alzheimers, she did have what I would call a mild form of dementia in her 70's. She could still add columns of numbers quicker than anyone I knew and could get around well.   I think it was harder on my aunt and my brother to realize that trying to get her to remember or quizzing her would only frustrate her. she and I could laugh because i told her she had remembered so much earlier that it was ok if she didn't remember some things now. 

Apr 14, 2012 12:13 PM