Archive for the ‘Advocate on Steroids for Caregiving’ Category

A Sad Day For Dementia

A Sad Day For Dementia040715 ASR Tribute To Dena Dotson Lifeclick_aboveJoin the conversation live Tuesday April 7th, 2015 BY clicking above

or calling into the show at 

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

April 1st, 2015, has changed what I will think of on April Fools Day going forward.  No longer will I think of the jokes or pranks being played.  I will first think of with a smile on my face about Dena Dotson.  A friend and advocate for dementia who lived her life honestly and brilliantly with the symptoms of the disease the very best she could.

Alzheimer’s Speaks is sadden with the loss of one of it’s experts living with dementia.  Dena Dotson had thought long and hard over several years on her decision 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 we know one thing, Dena no longer suffers from the symptoms of dementia which made her life unbearable. Today we will celebrate the gifts she gave us while here and grieve her loss together as a community as we journey forward together.

If you are unable to join the conversation live, but would like a statement read please email Lori La Bey.

Everyone is welcome to join the conversation. 

There is one rule for this show:

Everyone is to be respectful to Dena and her family.  There will be no tolerance for anything less.  We can and will debate the issue of life and death choice with dementia at a later, more appropriate time.

If you would like to help the family out to pay for a

Memorial Service for Dena Click Here.

Become An Advocate, Become A Purple Angel

SocialMedia081114_purpleangel_carousel TMFor more information on dementia and caregiving Click_belowalzsnap_serv_072413

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Top 10 Things Learned On The Journey With My Mother

Top 10 Things Learned

On The Journey With My Mother

In Honor of Bessie Eveyln Morgan Baldwin – Little Mama

5/1/1921 – 12/4/2013

#1. LEGAL STUFF:  be prepared. It is hard, but being prepared and having a plan is required to provide best decisions for their care and protection.  The day will come when you know you must think of final arrangements and honoring your loved ones wishes. Be prepared.

#2. GUILT:  Care Warriors, ban this word from your life. If you are on the front lines of this war whether your loved one is home cared or in a care facility, you are a care warrior. Decisions made from a heart full of love are good decisions. Only you know what is best for your loved one, your family and for YOU! Guilt has absolutely no place in a care warrior’s journey.

#3. UTI’s:  Almost a certainty.  Pedialyte:  little mama had one minor UTI in 6 years; we gave it to her 1/2 to 1/2 juice 3x a day.  It balances electrolytes and helps with overall hydration.

#4. PLACEMENT:  Trust your instincts: care warriors know when it is time – sometimes we know it is time and because of #2 we hesitate. Do not hesitate.

#5. FIBLETS: I outright lied to Little Mama. I even wrote fake prescriptions to make her accept care sitters and to take showers. I made up a fake form from her favorite doctor and it said – To the children of: ________________ Bessie must not be left alone at any time. She must also take a shower at least 3x a week. If you are unable to make these things happen, I will have to step in and find a care facility that can take better care of her.” That worked during the feisty stages.

#6. LOUD:  when seeking BEST care for a loved one, be as loud as it takes for as long as it takes. Too often there you will find a scary lack of knowledge among medical professionals about dementia diseases.

#7. KIND:  be especially kind to YOU! We already know how kind you are to loved ones.

#8. HELP/RESPITE:  if it is available, ASK!! If it is not available, do not take any guff off of anyone not actively engaged in the war (this is part of being kind to yourself). #2 is important here, too.

#9. HOSPICE:  Do not wait – trust your instincts.  If your loved ones are eligible for Medicare, please ask primary care physician to order a hospice review/or call them yourself. Earth angels. If accepted, no more ER trips – medical staff comes to you and Medicare pays! And they provide personal hygiene 3x a week!!!

#10. LOVE: I admire you all so much. There is nothing easy about this journey and I know you all are here because of love. Love. It is the strongest word. Blessings on your heads.

A Big Thanks to Diane for sharing her life with all of us.

By – Diane Elinor Baldwin Hoover, ElderofFive

Care Warrior for Little Mama 2005 – 2013

Administrator, Memory People™, Inc

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Alzheimer’s Speaks Radio on Creative Connections in Dementia Care

Welcome to Alzheimer’s Speaks Radio where all voices are welcomed to join the conversation.  We love hearing from people around the world.  Everyone from those diagnosed, family and friends caring for loved ones, professionals providing services, products or tools, researchers, authors, directors, producers, musicians, advocates for dementia and those that just want to learn more about the disease.

Click_below033115 ASR Creative Connection book REv Katie norris Jennifer BrushWe go Live Tuesday March 31st at 11am EST, 10am CST, 9am MST, 8am PST and 4pm London time.

Click above to listen live or listen later. 

Call in to join the conversation live at (714) 364-4757

Today’s show will feature the authors of “Creative Connections™ in Dementia Care: Engaging Activities to Enhance Communication. Jennifer Brush has been working for over 20 years to change the face of dementia care in hospitals, assisted living communities, nursing homes and home care.  Rev. Katie Norris is a Unitarian Universalist community minister and co-founder, with her father, of the Carolyn L. Farrell Foundation for Brain Health.

You can reach Jennifer and Katie below:

Katie: www.RevKatieNorris.com

Jennifer: http://www.brushdevelopment.com

For More Information On Caregiving And Dementia

Click Below On

Alzheimer’s Speaks – Multiple Platforms Of Information.alzsnap_serv_072413

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Here is the Dementia Chats Recording from Today March 24th, 2015

Here is the Dementia Chats Recording

032415_DC_snap_3Click Above to Watch

March 24th, 2015, Today we discuss loss.  The types of loss experienced when living with dementia.  How they handle dealing with loss as well as how others around them deal with it. There was also discussion of how those diagnosed with dementia are in need of volunteers to assist them and help bring the comfort into their lives.  Our experts living with dementia from the top left to right are: Steve Ponath, (Lori La Bey, facilitator), Robert Bowles. The bottom row from left to Dena Dotson, Paulan Gordon and Harry Urban.

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Boy Scout to Eagle Scout – A Vision Of Improving Lives Of Those Living With Dementia

Boy Scout to Eagle Scout

A Vision Of Improving Lives Of Those Living With Dementia

lucas_by_fish_tank_2Like many children, Lucas Cronin was touched by the likes of dementia through his Nana.  His Grandmother on his father’s side had been diagnosed with Alzheimer’s disease for over a decade.  To honor his Nana, Lucas decided to take action.  He would lace his passion for salt water fish with a project to improve the lives of those living with dementia.

Lucas decided to construct a salt water fish tank in a memory care center. Although this sentence sounds simple and outcome honorable, there were many parts to make this project a reality.

First was to find supporting data that the salt water fish improves lives.  He found the supportive data he was looking for in the below articles. An article which highlighted a Purdue study that states Aquariums may pacify Alzheimer’s patients.  The Purdue University research paper showed colorful fish in an aquarium improved the health and well-being of memory care patients. People with dementia were less likely to become agitated, and they ate better when present in a room with an aquarium filled with colorful fish. In fact, according to the researcher, one lady who had not spoken for more than five years, asked, “Are there 5 or 6 fish in there?”  Lucas also found another article titled Aquarium therapy which  highlights potential health benefits.

His parents Paul and Sally Cronin, along with his brothers Mclain and Elijah all supported Lucas and his vision.  Next, was to run the idea by his troop 9559.  Assistant Scout Master (ASM) Robert Riegel also encouraged Lucas to move forward with his project.  He even volunteered to help on the project as did Co-Scouts Nathan Kaufman, Kyle Findlay, Nick Schroepfer.

So even with a team set up to help there was so much more that needed to be done.  Researching how to build a salt water tank, itemizing all the things needed to build and supply the tank, raising the funds to purchase the items and finding a home for the tank when finished.  Yes there was a lot of work still needing to be done.

The research was extensive.  In fact Lucas discussed his idea with a salt water expert, Owner of Local Fish Store and Maintenance Company “Wet World,” Michael Hunter.  Mr. Hunter too decided to get involved and served as an adviser/mentor for some more advanced aquarium techniques.

Raising funds and securing supplies did not happen overnight.  In fact, the project took persistence. Lucas had to raise over $6,000 in financial donations from local businesses, family and friends and in-kind product donations from manufacturers and suppliers in the reef keeping industry. This is one of the largest Eagle Projects in the history of Northern Star Council.

Below is List of Donors:

Wet World

Hydor USA

Bulk Reef Supply

Dr. Tim’s Aquatics

Legacy Wealth

Resultants for Business

Norflex inc.

Stebgo Metals


Valley Creek Builders

You would  think finding a home for a free salt water tank would be a no brainer, especially with the data showing the health benefits, but logic doesn’t always follow the path of least resistance in the real world.  Getting a name of the right person to talk to and finding time in their busy schedule took longer than planned, only to find several communities did not have money in their budget to maintain the tank, $200/month.

Than at last, Lucas found the perfect partner for his project with the help of Mr. Jim Bradshaw.  He introduced Lucas to Boutwells Landing in Oak Park Heights in Minnesota.  There he spoke with Deb Campbell, the Director of Activities. Boutwells was thrilled with the project and was grateful to receive this wonderful gift which would enhance their resident’s lives.

Lucas still was in need of information on how to build the physical tank stand and canopy.  He had no prior experience in woodworking, so he needed an expert to help him.  At Boutwells he found Joe Carufel, a resident who was a woodworking expert.  Joe jumped on board to be a mentor to help guide him with his project.  Lucas created the designs using a 3-D sketching software and brought them to Joe to review.  Together they tweaked the designs a bit and built the stand.

lucas_videoClick above to learn more about the project

It was nineteen months from conception that Lucas was able to install 190 gallon salt water fish tank.   

lucas and friend with coral setting up tankfish_list_lucasKudos Lucas For Improving Lives!

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The Importance of Family

The Importance of Family

By: Michelle Remold

I have been mulling this post over in my mind for about a month and I believe it has finally come together. It actually kept ringing through my head, so I finally decided to sit down and write it. My grandmother, who had dementia, passed away in January and that is when this blog post started piecing itself together.

At some point last year I made a promise to myself that I was going to spend more time with my family and relatives. I don’t mean just going to family functions, but really being present in the moment and making an effort to be with them, even if that meant detaching from my phone, emails, and social media. This promise to myself especially applied to my relatives in Iowa.

Last fall I made my first five hour trip to Iowa. I wanted to spend time with my family and truly enjoy it. I don’t know about you, but at that point I couldn’t remember the last time I went an extended period without my phone or social media. During that trip I logged out of my email accounts, didn’t check Facebook, and didn’t text or call anyone while there. It was wonderful! It was the most relaxed I had been in a long time. I quickly decided that I would be making another trip down in the spring. That trip happened this past weekend
It once again was a wonderful trip and I detached myself from my phone once again and was able to enjoy the visit. The trip was filled with reminiscing and laughter, but this trip had a slightly different tone as well. As I said, my grandma passed away in January and it is her sister (my great-aunt) and her family that I have been visiting in Iowa. It really hit me when my grandma passed away, that it was even more important for me to make the effort to visit Iowa more, as this is my grandma’s only living sibling. Coincidently enough, I had this trip planned for what happened to be shortly after my grandma’s passing. It was great to spend the weekend with family, to look at old pictures, and to share stories of my grandma when she was younger; after all, stories are a way to keep memories alive.

When I think back, I believe I promised myself that I would make an effort to spend more time with family after hearing the song, “Was That my Life?” by Jo Dee Messina. The chorus of the goes like this, “We just get one ride around the sun, in this dream of time. It goes so fast that one day we look back, and we ask: was that my life?” When I heard this song I immediately asked myself, what I would want to remember one day when I looked back at my life. Family has always been a big part of my life and I knew that one day I would want to remember the time spent with them. My family has always been my biggest support system and the people I could bounce ideas off of. I have written previously about my grandfather being the driving force behind why I chose a career in gerontology and why I have a passion for Alzheimer’s. Family truly does have a large impact on my life.

What I have learned is that family is important. You may not always like each other or get along, but when all the chips are down, family is there for you. I learned the importance of family when my grandpa was diagnosed with Alzheimer’s when I was seven and this point happened to be reiterated to me after my grandma passed away.

Alzheimer’s and dementia have had a way of teaching me lessons during my life and for those lessons, I am thankful. After all, if I just get one ride around the sun, I want to make the most of it, create as many memories as possible, and most importantly, spend it with some of the people I love the most.

???????????????????????????????Michelle graduated from the University of Northern Iowa with her Bachelor of Arts in Gerontology: Social Sciences and a minor in Family Studies. She is currently pursuing her Master’s degree in Social Work with an emphasis in Aging from Minnesota State University Mankato.

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Life & Death With Dementia – A Choice We Chose Not To Discuss

Life & Death With Dementia

An Important Conversation March 17th, 2015

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

031715 ASR Replay of Life and Death w Dementia Taboo discussionA Choice We Chose Not To Discuss, but is very necessary for many to have as it involves quality of life issues at it’s core.

This show is a replay from a couple of years ago but I know you will find the conversation still very relevant regarding disease.  Take a listen and let me know your thoughts.  I know my opinions changed after partaking in the discussion.  Yours just might too.

Today we will devote the full two hour show to a conversation with a variety of people and thoughts of living and dying with dementia.  Should one have the ability to decide when they want to end their life?  If so, when and under what circumstances?  Hear from those living with the disease, care partners, a Doctor, a Hospice Worker, an Attorney and more.  My guess is you are going to be pretty surprised by what you hear during this conversation.  I know I was.

Please note, Alzheimer’s Speaks understands not everyone will appreciate let alone agree with all comments on this show.  So feel free to post your thoughts whatever they are. What questions do you have?  What thoughts of yours do you want heard?  We believe all voices need to be heard.  We only have one rule, that all comments be respectful.

Our goal is to get the topic off the taboo list.  It is our belief we need to learn more about how everyone deals with this diagnosis. What are their needs?  What are their concerns? How can we help live better with dementia?

For More Information on Dementia and Caregiving

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