Alzheimer’s Speaks Radio – Shifting dementia care from crisis to comfort around the world one episode at a time by raising all voices and delivering sounds news, not just sound bites.
The Show Goes Live – Tuesday – Oct. 29th 2019 2pm EST, 1pm CST, 12pm MST, 11am PST & 7pm London and on the 31st at 6am in Australia
Click Above To Go To The Show
Today Lori La Bey, host of Alzheimer’s Speaks Radio talks with Trish Laub’s whose care for her parents, one with Alzheimer’s disease shaped her into an expert through lived experiences. Trish learned more than she probably wanted to know on living with Alzheimer’s, dignified care, and end of life. She has a great book series you can check out below on her journey and experience caring for her parents. Join our live conversation Tuesday Oct 29th by utilizing the chat box or call in with your questions or comments at (323) 870-4602. We love to hear from our listeners!
“Feedback from the conference planning committee and our leadership team was extremely positive. Many attendees commented that she was one of the best speakers they had heard.”
Pat Sylvia, Director of Education & Member Development LeadingAge WA
Below is an article by Author, Trish Laub who will be guest on Alzheimer’s Speaks Radio October 29th at 2pm ET, 1pm CT, 12pm MT, 11am PT, 7pm London and 6am in Australia on the Oct 30th.
I think for a moment my heart
stopped. Had I really been told that my dad was being treated for Alzheimer’s?
I hadn’t really had time to absorb the news when I heard Maria Shriver, who has
worked to spread awareness of Alzheimer’s, speaking about her father who had
been diagnosed with the disease. She shared some valuable advice that she had
been given: to accept her father as who he was at the time, just as she would
have had he not been living with Alzheimer’s. That one piece of advice, intended
for someone else, saved me! That was the start of my shift in perspective —
that even with Alzheimer’s, the possibilities were limitless for my dad
to have a meaningful life.
I imagine that I knew that there was
a stigma about Alzheimer’s looming somewhere. But I had never known anyone with
the disease, and I had no investment in the stigma. What I would come to learn
through my experience with my dad was that the Alzheimer’s stigma is unfounded,
for a variety of reasons, and is not only based on fear but also generates it.
Here’s what the stigma, and its negative ramifications, mean to me:
S-T-I-G-M-A
Shortsighted limitations => causes missed opportunities for quality of life
Taboo => thwarts supportive communication
Ignorance=> results in fear
Genetic cause => exaggerates heredity factor
Memory erased=> minimizes reinforcement of old or creation of new memories
Applicable to all => eliminates individuality and uniqueness
I had
heard one piece of the stigma, that Alzheimer’s is a death sentence. In one
pivotal moment, I had the thought “but perhaps Dad will die from something
other than Alzheimer’s.” He had heart disease, and people died from accidents
all the time. I didn’t want either alternative for my dad, but it opened up a
new way of thinking for me. Alzheimer’s would be a factor in his life, but it
might not have the final say.
Another pivotal moment for me was hearing that a doctor told Maria Shriver, “Once you’ve seen one case of Alzheimer’s, you’ve seen … one case of Alzheimer’s.” I was now ready to fight against any preconceived notion about life with Alzheimer’s, to find the uniqueness, and I refused to buy into the stigma.
Here’s how I saw my mission:
R-E-F-U-S-E-D
Rise to the challenges and recruit a care team to help
Educate myself
Fight for what’s best for my loved one
Unknown may not mean unbearable
Solutions abound to solve problems that arise
Engage my loved one wherever they are in that moment
Different does not mean less
I committed to doing everything in my
power to see that Alzheimer’s was going to have the smallest-possible negative
impact on my dad’s life. I had the great clarity that my dad was still my dad,
that he might be different, but not less. He was not a disease, and Alzheimer’s
was not his identity. I would work to keep his life as close to the way he
would have lived without the disease.
My
shift in perspective would go on to dictate that Alzheimer’s was not going to
define the man who loved me unconditionally, as Alzheimer’s did not have that
power. It is a disease, not a man, and certainly not my dad. I knew that I was
in uncharted territory, but I was going to find my way. What I found was that
even when living with Alzheimer’s, there are limitless possibilities to live a
meaningful life, and that was a reality for my dad.
Sadly, the stigma associated with Alzheimer’s
continues to exist. My own mom didn’t want anyone to know that Dad was living
with Alzheimer’s, because she feared that others would see him as less. That is
heartbreaking. The stigma is unfounded, based on outdated information, before
the importance of diet, supplementation, exercise and brain stimulation were
understood. It doesn’t help that few want
to talk about it. The stigma continues to propagate fear of being diagnosed with Alzheimer’s or of having a loved one
diagnosed with it.
Understanding Alzheimer’s is important. Knowledge
empowers you with a clear understanding of what you are facing and reduces fear
so you can analyze your options with a clear head and make educated decisions.
We need to come out of the shadows and talk about what Alzheimer’s is and what
it is not.
I believe that my dad’s success in continuing to live a meaningful life with Alzheimer’s was largely due to my family’s rejection of the stigma and fear, and our willingness to shift our perspective from limitation and deficit to limitless possibilities. If it was possible for my dad to live a most meaningful life to the end with Alzheimer’s, then it is possible.
Trish Laub is an expert on living with dementia and navigating the maze of care options and decisions for dignified care through end of life. Trish will be a guest on Alzheimer’s Speaks Radio Oct 29th.
Alzheimer’s Speaks Radio – Shifting Dementia Care from Crisis around the world one episode at a time by raising all voices and delivering sounds news, not just sound bites.
UPCOMING PUBLIC EVENTS WITH LORI LA BEY:
Coming to Elmhurst, IL – Oct 16th & 17th
Coming to Minnetonka, MN – Oct. 19th
Coming to Reading & Lexington MA – Nov. 13th & 14th
“Feedback from the conference planning committee and our leadership team was extremely positive. Many attendees commented that she was one of the best speakers they had heard.”
Pat Sylvia, Director of Education & Member Development LeadingAge WA
Dementia-Friendly Books Offering Simple Story Lines
Get Your Alzheimer’s Stamps!
AARP MN 50 Over 50
FootBar Walker
National Institute for Dementia Education
Alzheimer’s Speaks
Alzheimer's Speaks believes working together and sharing knowledge is the best way to win the battle against this disease. Please explore the site and share your thoughts.
Alzheimer's Speaks Blog 