Monthly Archives: February 2012

Simple Things – Social Media

Dear Family & Friends,

When I met with Devin Roos at the Alzheimer’s Association a few weeks ago to talk about the 2012 Louisville Walk, we kicked back and forth a few ideas for simple things we can do to promote awareness of the Walk and the Alzheimer’s Association.  Today, I thought I’d share some ideas for those of you using Facebook, Twitter and other social media:

  • Use the Walk to End Alzheimer’s logo as your profile picture on social media. Here is the logo:
  • Post a picture of yourself or your Walk team from prior years wearing the Walk to End Alzheimer’s t-shirt.
  • Visit http://act.alz.org/site/PageServer?pagename=walk_homepage to sign up yourself or your team for the Walk and then post the fact that you’ve done so on your social media pages. Use the tools to share the post with your friends and family and then invite them to sign up as well!

Three very simple things. I’ll post more ideas in the coming weeks for those of us who don’t use social media. Keep in touch, and let me know how you’re spreading the word!

Sincerely, Bonnie

Dr. Karen Robinson, Professional Caregiver of the Year

Check out this article from the News and Tribune about one of the people who will receive an award at the Alzheimer’s Association fundraiser on Saturday evening, Making Memories at Horseshoe Casino.

http://newsandtribune.com/x560584167/Handled-with-care-Charlestown-resident-to-receive-reward-for-program-after-disease-hits-home

Aging Care Speech I Found Fascinating

Dear Family & Friends,

Louisville is blessed with some incredibly smart, generous people who have insight, talent and a willingness to work relentlessly to support our community and its people.  I recently came across the remarks of John Reinhart President & CEO of the International Center for Long Term Care Innovation (“InnovateLTC”), the nation’s first incubator for innovative aging care products and services.

Louisville happens to be the world leader in aging care company headquarters, and that is leading to some fascinating networking and collaboration regarding how and where the world’s growing aging population will live and work in the coming decades. The speech you’ll find at the link below offers some interesting insight on that topic.

But what I also found interesting and touching about the speech are his reflections on how “aging care” is really a lifelong wellness proposition, and that different generations have different perspectives on what it means to age well. I welcome your thoughts on his remarks.

http://innovateltc.com/2011/12/09/when-the-quest-for-aging-innovation-becomes-personal/

Sincerely, Bonnie

Gifts for the Alzheimer’s Patient – Picture Pillow

Dear Family and Friends,

My sweet mother-in-law’s birthday is on the horizon, and we are once again trying to come up with a gift that acknowledges how much we love her without adding to clutter in her lovely, but small, room in the memory care unity where she lives in Wisconsin.

As Alzheimer’s Disease has taken more and more of her ability to notice, understand and appreciate the people and things around her, we struggle to keep the gift-giving process meaningful and enjoyable.  Of course, we feel just being with her is most important, and my husband is looking forward to visiting his mom this year on the actual day of her birthday. But it’s very hard for him to go without something in hand.

He always takes a hot fudge sundae — she still seems to enjoy those, and will open her mouth for a bite every time you offer it, although you do have to remind her for each spoonful.

I wanted to share with you one of the most successful gifts we gave her. It was for Christmas a couple of years ago, and it was what I called “the picture pillow.”

We had begun to notice that Mom had stopped paying much attention to photo albums we tried to share with her, until one day when I turned a page and an 8″x10″ photo filled an entire page. She immediately said, “That’s my David,” referring to my husband. That brought tears to his eyes, and we realized that perhaps she couldn’t see the faces in the smaller pictures throughout the rest of the album. Who knew? She couldn’t tell us whether her vision was failing, because she had pretty much stopped talking except when prompted to speak a specific word, many months before.

As her Alzheimer’s had progressed, Mom could usually be found sitting in her wheelchair with her chin down on her chest, eyes open, with her field of view taken up by her hands, folded and still, sitting in her lap. So it occurred to us that it might be nice to have something she could keep comfortably in her lap, and that had a large picture in it that could be switched out regularly.

We came up with the idea of making a large lap pillow, stuffed a little less firmly than a regular pillow so her hands wouldn’t slide off, and sewing onto the top a clear, vinyl pocket into which a photograph could be placed. I found some soft, washable velvet brocade and cut out the 17″ x 17″ pillow sides (allowing for 1″ seams). Before sewing the sides together, I stitched a 9″ x 11″ clear vinyl pocket centered onto the front, stitching only on three sides (the fourth side is the opening into which the photo can be slid in and out), and then gluing (using washable fabric glue) some braided trim on top of the vinyl on all four sides as a kind of “frame.”  Then I sewed the two pillow sides together, adding a zipper so that the cover could be removed and washed as needed

Now, whenever we or someone else visits, we encourage them to take an 8″ x 10″ photo and plop it into the pillow pocket. We don’t print high-quality prints — we can just snap a quick copy of a photo using the camera on a cell phone, then enlarge it and print it on our home printer on regular paper. It doesn’t really matter because Mom’s vision isn’t clear enough to see fine detail.

We also try to make sure the photo is a close-up of one or two (at most) people so that the faces are large enough for her to distinguish.

I’m grateful for the sewing lessons that my own Grandma Nana gave me, starting when I was just 4 years old. It’s very satisfying to use those skills to give a little something back to another woman who means so  much to me.

What about you? What gifts have you given an Alzheimer’s patient that you have found particularly meaningful? Please share with us, because Mother’s Day is just around the corner!

Sincerely, Bonnie

First 2012 Committee Meeting – Ambitious!

Dear Family and Friends,

The 2012 Louisville Walk to End Alzheimer’s committee met for the first time last week and we came up with an ambitious agenda of activities for boosting participation in the Sept. 8 event.

One of the things we will be doing is setting up tables at various venues around town where you can sign up for the walk and, if you donate $25 at that time, you will be entered into a drawing for a free e-reader! We will have a computer with to make it as easy as possible to sign up. Keep an eye out for these great events.

Also, I wanted to let you know that a couple of what we call “third-party” events are scheduled already – these are events put on by Walk teams to raise funds toward their teams’ donation:

  • I am chairing Backyard Baseball & Bar B Q on July 28 from 4-8 p.m. at St. Thomas Episcopal Church on Westport Road. This is a family-friendly event that includes an old-fashioned baseball tournament for teens and kids, as well as a silent auction, raffles, dunking booth and live music by Muench! Great food will be available as well and everything is donated so that all proceeds go directly to the Alzheimer’s Association.
  • The Mudd Sisters Steamboat Race Annual Benefit is an enormously fun gathering at Kingfish Restaurant on the Ohio where you can watch the Kentucky Derby Festival’s Great Steamboat Race an help raise funds for the Alzheimer’s Association at the same time. This 7th annual benefit is held in honor of Trudy Mudd, who has suffered with Alzheimer’s for 23 years! Dinner and dancing to a live band, cash bar and heavy hors d’oeuvres are included in the price of $35 per person. May 2, 5-11 p.m., call 451-4266 for more information.

You can hold your own third-party fundraiser event, and it can be as simple as a car wash or a rummage sale, or as big as one of the above events. If you need ideas, please don’t hesitate to comment here, or to call Devin Roos at the Alzheimer’s Association at 502-451-4266.

Thank you!

Bonnie

Thank You Note from a Researcher

Researcher Dean Hartley, PhD, of Rush University Medical Center in Chicago, says National Institutes of Health funding for Alzheimer’s research is declining, so he is grateful for a research grant from the Alzheimer’s Association. Hartley’s research focuses on how the disease starts and spreads through the brain. Read Dr. Hartley’s full note here: http://act.alz.org/site/PageNavigator/FY12_Highlighting_a_researcher_page.html

Free Training for Ky Derby Festival Mini/Marathon

Check out this blog post from Courier-Journal writer Jessie Halladay about “accidental  athlete” Barry Esslinger, who is offering free training for the Kentucky Derby Festival’s marathon and mini-marathon.  It’s part of Barry’s efforts to raise funds for the Alzheimer’s Association, which is an official charity of the races this year. Barry is doing the training through partner Fleet Feet.

http://blogs.courier-journal.com/accidentalathlete/2012/02/10/going-beyond-our-boundaries/

 

He forgot how to swallow

Dear Family and Friends,

I enjoyed lunch with a couple of girlfriends yesterday and the conversation turned to one friend’s late husband, who died of Alzheimer’s.  His story is like those of so many others who lost their lives to this disease, and it illustrates the great distance from which an individual can fall when in the endless grip of Alzheimer’s.

“Gene” was a NASA physicist. He built a career interacting with the most brilliant of the brilliant, helping explore worlds beyond even my imagination. He also built a home life with his wife, my friend “Maura,” and with children and grandchildren who loved him. One grandchild has spent a childhood at space camps and plans to follow in Gene’s career footsteps. He will finish his undergraduate degree soon and move on to graduate school.

I didn’t meet Gene until after he was diagnosed, and after he and Maura moved to Louisville from California to be closer to their daughter, who could offer some help with Gene as his memory weakened. The first time I heard Gene speak publicly, the brilliant scientist had trouble putting a clear sentence together.  It was heartbreaking, mostly because he knew he was confused. Yet he kept at it, and in the end his message of faith rang clear. Feelings of both sadness and gratitude washed over me as he spoke. Sadness for a disease that took away so much; gratitude for his faith, which gave him peace as he left the podium.

Of course, he wasn’t always peaceful. Sometimes the frustration or grief won out, and that was particularly difficult for Maura. She told me that, one time,, when she took him to a day program for individuals with Alzhiemer’s, she returned to find him sobbing. I remember thinking that must have been so hard for her to see her rock in life reduced to child-like anguish.

There were bright spots — moments of joy that are so important to patients and families dealing with Alzheimer’s. A church friend, a woman with young children, began taking Gene out for day trips and he seemed to love those excursions. Perhaps he even had a crush on the young woman – Maura didn’t mind. Gene was happy and content on those days. And it gave the young woman an opportunity to earn a little income while exposing her young children to another generation, and to give them an opportunity to serve someone in need simply by being with Gene and socializing with him.

In the end, Gene forgot how to swallow and he died because food became lodged in his lungs. From plotting planetary orbits to forgetting how to swallow. I’m glad that doesn’t fully describe Gene’s life, which was so much richer. But it does demonstrate the human heights from which Alzheimer’s can cause its victims to fall.

In know Gene no longer suffers in the tidal wave of confusion and loss of Alzheimers’, but there are more than 80,000 Kentuckians who are still suffering. And their families and friends are struggling to take care of them, finding moments of joy of course, but also hours of sadness and frustration.

If you haven’t already signed up to participate in the 2012 Louisville Walk to End Alzheimer’s, or in the Walk in your own city, please do so. Please help us lift the dense fog of confusion and grief that surrounds the victims of Alzheimer’s. Thank you.

Bonnie

 

Love Your Parents, Know Your Family History

Dear Family and Friends,

,

My parents are both gone from this earth, so this is graphic is particularly meaningful to me. I’m glad I was taught by my parents, as well as friends, grandparents, teachers and mentors, to appreciate and spend time with those in  my family who came before me.

As an adult, I got to know many of them and enjoy listening to their own childhood and early adult memories. As I have worked on my family genealogy, I have been able to incorporate  many of those stories, writings and memories into my family album, and to share that album electronically with other family members.

Because of this work, I know that I came from many hard-working, not well-educated people whose lifetime of dedication made my life laid the foundation for making my life so much easier. I also know that I can do hard things, because it’s in my blood.

Next step? Embedding in my children a love for genealogy and learning about their ancestors. Because they will have to face hard things in their lives as well, and knowing their family history will help remind them that they have within themselves what it takes to find joy in hard work, dedication, sacrifice and love.

From time to time, I will share a family history moment of my own in this blog. I would love to hear some of your family history moments as well.

Bonnie

Early Onset? Here are some great resources

Dear Alzheimer’s Family & Friends,

My mother-in-law has had Alzheimer’s for 11 years, and she is in her early 90s. While her condition is very sad to those of us who love her so dearly, we are grateful for the many years we were able to interact with her and watch her interact with our children.  She was a strong influence in my early marriage to her wonderful son, showing me by example how to express deep love for one another on a daily basis.

A growing number of individuals are being diagnosed with Alzheimer’s at a much earlier age, however. How frightening that must be! Those of us in the heart of middle age often joke among ourselves when we misplace our keys, forget someone’s name, or can’t remember why we entered a room. But to face a diagnosis that tells you that your initial symptoms likely will lead you, during what are supposed to be your most productive years, to a state where you are sitting quietly in a chair with your head bowed, unable to recognize anyone you love, practice a talent, extend a helping hand or enjoy a favorite pastime … it’s almost unbearable to think about.

The Alzheimer’s Association has some great resources, and some tips for planning ahead. That’s a key, I’m told. Planning for your future, so that you have a say in things that are important to you.  Here’s a link: http://www.alz.org/living_with_alzheimers_early_onset.asp  Have you used some of these resources? Tell me what has worked for you. I’d love to share it with my readers.

And don’t forget to link up with our local chapter, www.alz.org/kyin. Now there’s a group of wonderful, committed people.

P.S. Have you signed up for the 2012 Louisville Walk to End Alzheimer’s yet? Please join me and hundreds of others in raising funds to reach our goal: A world without Alzheimer’s.

Bonnie