Team captain networking event a chance to share ideas

Do you have a great idea – or do you need a great idea – for helping your Walk to End Alzheimer’s team beat last year’s fundraising goal?  Last night’s first team captain kick off and networking event was an opportunity to brainstorm and share ideas, and we heard a lot!

(If you missed out, more events are planned…read on!)

One team is planning a corn hole tournament; another has organized a softball Louisville kick off photo-ideas croppedtourney; at least two teams are having yard sales and bake sales; another team is going to have a kick ball tournament; and yet another is planning an event with Karoake!

Participants in last night’s event discussed all these ideas and more, asking others who had already produced successful events for tips and contacts. Team captains also talked about:

  • how long-term care facilities can build their family and friends teams;
  • how corporate partners can grow their employee teams;
  • how to get your story told, to draw in more donors;
  • how to use Facebook and other social media to raise funds;
  • how to re-energize teams that have been around for a while; and
  • how to keep a team going after the loved one who suffered with Alzheimer’s has passed on.

Kindred Healthcare hosted this first event, providing truly delectable munchies (including my favorite, green chili wontons with guacamole) and a lovely space, as well as pleasant, live background music. I’m very grateful for Kindred’s continued, significant support to the Alzheimer’s Association.

Champp’s on Bullitt Lane behind the Ford dealership and Kohl’s in St. Matthews will provide free appetizers and the space for our next networking event, scheduled for happy hour on Tuesday, July 16. Whether you are the captain or a Walk team member driven to help your team do more this year to help end Alzheimer’s, this is an opportunity to listen, learn and share. I promise you’ll come away pumped up with ideas and inspiration to do more! So put this on your calendar.

Meanwhile, if you haven’t already, visit the http://www.alz.org website to register your team and create your own team fundraising page, from which you can send emails, create a Facebook fundraising message, send thank you’s to donors and use a variety of other easy, convenient tools.

Walk season is here! Let’s get going!

Bonnie

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Elmcroft at Oaklawn holding car show to benefit Alzheimer’s Association

Oaklawn SL- Fathers Day Car Show- EB

He still remembered how to spin me around the dance floor

Dear Friends and Family,

Veronica Idle serves on the 2013 Louisville Walk to End Alzheimer’s committee with me, and she has been volunteering with the Alzheimer’s Association for about six years. Like so many of us, Veronica has a personal connection to the disease. This is her story.

“The reason I volunteer is because of my dad, who was diagnosed with the disease 8 years ago. He was 59 and in pretty good shape.

“My mom had noticed something “different” about him. My parents live in Mt Sterling (about an hour and half from Louisville) and usually my time with them was on brief weekend trips.

“That summer we took a family vacation to Charleston, S.C., and after a week’s time with him, my sister and I definitely noticed something was off. My mom made an appointment with the doctor. The call I got after that appointment will be something I’ll never forget.

“The doctor was quite certain it was Alzheimer’s. Dad had failed a memory test and some of his most basic cognitive skills were already deteriorating. I was so shocked and upset. I really didn’t know what to understand of this. I’m very close to my parents and I was a daddy’s girl. He’s always been there to do so much for me. I didn’t know what this meant. And he was so young. Wasn’t this a disease that really old people got? Like in their 80s and 90s?

“I got online and started doing research. I’m a planner and I like to know what to expect. Some of the things I read made me burst into tears. I couldn’t believe this could be possible with my dad. I decided from that moment on, that I wouldn’t research anymore and I would take it one day at a time.

“That has been what has gotten me, my sister, and my mom through this. One day at a time. I’ve also learned the importance of quality time. Every moment I’m with them is valuable quality time and I always let them know how much I love them.

“Since the diagnosis, we have been living through all the stages of the disease. Yes, my dad is very different and roles and abilities have changed a lot, but he’s still my dad. He still gets excited when he sees me, although he couldn’t tell you my name. He may not have understood everything when he walked me down the aisle at my wedding two years ago, but he still remembered how to spin me around the dance floor.

“We have faced many challenges, like when he had to go into early retirement, when the guy who loved cars was told he could no longer drive, when we realized that he could no longer go on vacations, and when my mom had to quit her job to care for him full time. There have been a lot of tears and sad times, but he’s still a person. Alzheimer’s doesn’t define him or our lives.

“And there’s so much I’m not going into. Like the effects on my mom as his caregiver. The financial issues and other health concerns that he really can’t tell us about.

“It took a few years before I felt comfortable sharing with others about his condition, and a few years before I felt like fighting for the cause. But I love the people I have met through volunteering with the Alzheimer’s Association. And although I wouldn’t have started volunteering if it weren’t for my dad, it’s not about him while I’m still on the committee. I don’t want anyone else to have to experience what my family is going through. There’s nothing I can do to take the disease away from my dad, but I can fight for other dads and moms and grandparents.

“There are so many great charities out there, yet so many of the diseases they represent have cures and options for treatment. Not Alzheimer’s. We found drugs and activities for my dad that we hoped slowed the progression of the symptoms. But there is no cure. This is one that won’t go away unless we do something about it. And I’ve seen the statistics. It doesn’t look good. I’m determined to do my part in helping raise funds to find a cure.”

Veronica and her husband are hosting a One-Pitch Softball Tournament on Saturday, June 29, 2013, at Watkins United Methodist Church – 9800 Westport Road Louisville. The first game starts at 9 a.m. Each team is guaranteed three games and the winning team will receive t-shirts.  The registration fee is  $150 per team. For more information or to register your team, please contact Mike Idle at MikeIdle01@Gmail.com or 502-991-9782.

Thanks, Veronica, and all you other amazing volunteers, for all you do.

Bonnie

On a date with the love of her life

Dear Friends and Family,

Here is the latest post from Barbara Webb, whose husband has Alzheimer’s Disease.  This one made me laugh out loud. I’m so grateful my dear friend had this wonderful opportunity to enjoy an evening out with her husband.

“There has been a lot of stress in our lives lately, so both Al & I were looking forward to going to the Alzheimer’s fundraiser, Making Memories.  We went last year and had such a good time.  And when we realized that this year they were going to have a band and there would be dancing, we were especially pleased.  Al & I have always loved dancing, so this sounded like an opportunity to have some fun and let loose.

“Getting ready to go to the fundraiser was a slow, arduous process trying to get both Al & myself ready.  Al asked three times what to wear even though we had it set out on the bed.  He put those clothes away once and then asked again what to wear.  On the drive to meet our friends who we were going with, he asked me where we were going and who we were going with, not once but twice.

“Although Al is still able to be very sociable, I did wonder if this might be more than he could handle.  Would he be able to hold a conversation with not only our friends, but with people he didn’t know or wouldn’t remember previously meeting?  I think all caregivers have the same thoughts – wanting to have our loved ones remain independent, but also not wanting to put them in situations that will embarrass them or be beyond their abilities.

“So after saying a little prayer, with much trepidation, we forged forward.  And what a great experience.  It was like being on a date with the love of my life.  Even when he was speaking to people he didn’t remember or had not met before, the conversation and his sense of humor charmed them.  At one point he was talking with one of our tablemates to the extent that I was totally left out and they were having a great discussion.  I was never happier to be ignored.

“But the best part of the evening for me was the dancing.  Teepa Snow stated in a talk we attended once that music was one of the last things a person with Alzheimer’s loses and we proved her right.  Neither Al nor I are great dancers but we have such fun on the dance floor.  And this time was no different.  We danced fast with the same rhythm and enthusiasm as ever to the point that my feet wanted out of my shoes! Our slow dances were still romantic with Al quietly singing in my ear.  I felt young, sexy and pretty.  Just like years gone by.  And I think Al felt the same way.

“So, as much as our lives have changed over the past four years, we realize not everything has changed (at least not yet).  And we both vowed to enjoy more evenings out like last night – more time to enjoy each other, more time to have fun and appreciate our life together.

“So, if you know of a good place to dance and cut loose, let me know.  We’ll be there!!!”

Making Memories is a fundraiser for the Alzheimer’s Association, held each year in Louisville, Lexington and Evansville. This year, the local chapter changed it up a bit to add dancing and live music.  Clearly, Barbara and Al enjoyed the evening!

 

Bonnie

 

 

Barbara and Al Webb’s continuing story

Friends and Family,

It’s time to start this blog back up as we approach the 2013 Walk to End Alzheimer’s on Sept. 7.  It’s also time for you to sign up your teams at http://act.alz.org/site/TR/Walk/KY-GreaterKentuckyandSouthernIndiana?fr_id=3390&pg=entry, so you can begin your fundraising.

Meanwhile, here is a post from our dear friend, Barbara Webb with an update on her husband, Al:

 

I am happy to report that Al’s health has not deteriorated significantly, but there are enough changes that make daily life quite frustrating for both him and me.  Can you imagine going to the basement refrigerator only to get there and have to go back upstairs and ask what you were supposed to be getting? How would you react when there is a simple task you have completed many times in your life but now you can no longer figure out the sequence of directions nor even be able to understand the directions?  Would it scare you when you can no longer totally follow a television show or even a conversation among friends?  Welcome to Al’s world and the world of all Alzheimer’s patients.  I can’t speak for what goes through his mind, but I do know what goes through mine – frustration with my inability to help him more, sadness at what we have lost, fear of the unknown and future.  I try to remain calm and patient and remember above all else, he can’t help himself-it’s the disease.  But it isn’t easy for me, either, just as it isn’t easy for any caregiver. To see my strong, educated husband say to me that he is stupid tears my heart out.  He isn’t stupid; this disease is slowly shrinking his brain and not allowing him to think and remember as he used to.  When he asks me the same question over and over again and I want to scream, I have to take that deep breath and tell him one more time the answer to his question. I try to remain calm and loving because if I have learned one thing it is that it doesn’t help to raise my voice and you can’t argue with an Alzheimer’s patient.  It only exacerbates the situation and leads to more frustration.  Notice I used the word “try” to remain calm, but I haven’t totally accomplished that feat.  (Being a Type A doesn’t help, either.) And I know it is me that needs to do the changing because unfortunately, Al is not able to do that anymore.

 

I have read over and over again how caregivers need to care for themselves, but find it so difficult to do.  It seems there are very few moments for myself and when there are sometimes I am too tired to do anything but collapse in my easy chair.  But our therapist has helped me realize this needs to be a priority in my life, so I am trying to follow through on this.  I love massages so I have made a commitment to get a massage once a month.  (I signed a yearly contract so I would have to follow through!) I am also making a more concerted effort to say no when outside obligations are asked of me. (I haven’t fully accomplished that one.)  And I am being more forthcoming in asking help from family and friends.  I still try to make time for a mini “Shabbat” (a joyful time of rest) but that doesn’t happen as regularly as I would like. 

 

One thing I hope all caregivers take advantage of are the many workshops, programs, articles, books that are available to us.  If you are ever able to see Teepa Snow speak, don’t walk but run to her.  She is a very knowledgeable professional who speaks with much humor and love. (That is where I learned that the brain actually shrinks during the progression of Alzheimer’s, not just plaque buildup.)  I highly recommend the Best Friends Approach to dealing with Alzheimer’s.  This approach helps to enhance the lives of those living with Alzheimer’s and their caregivers’ lives as well.  The hope is that we will be able to turn from frustration and despair to joy and hope.  ”A Dignified LIfe-The Best Friends Approach to Alzheimer’s Care” by Virginia Bell and David Troxel, is a wonderful book that has helped me immensely in trying to continue to allow Al to lead a life of dignity and hope while keeping our relationship in tact as much as possible. Alzheimer’s Association has many enlightening programs for whatever stage your loved one is in.  You can get on their mailing list or email list and learn about all of the programs that are available in your area.  (www.alz.org)

 

Although we face the fact that we may need to place Al in a facility someday if I can no longer care for him, we are both committed to keeping him at home as long as possible.   As I have said many times, Al is the best thing that has ever happened to me and I wouldn’t change my life with him for anything in the world.  I daily live by the scripture verse Philippians 4:13 – I can do all things through Christ who strengthens me.  And a little humor never hurts – It is so difficult to remember when you are up to your ears in alligators that your initial task was to drain the swamp. Oh my goodness, welcome to the world of Alzheimer’s and caregiving!!! 

 

Teri Shirk on Managing Holiday Expectations

Making the Holidays Enjoyable When a Loved One has Alzheimer’s

A Guest Post By Teri Shirk

 With all their potential for joyous reunions with beloved family members and friends, the holidays also can generate a great deal of angst at the prospect of visiting a loved one diagnosed with Alzheimer’s disease or another memory disorder.  The upcoming visit may lead to several questions:

  •  How should I respond when Aunt Mary tells the same story over and over, or when she forgets who I am?
  • How can I help Dad deal with his anger and frustration over Mom’s behavior?
  • What can I suggest to my young children and teens to help them enjoy the visit with Grandpa?

Spending time, even just a few hours, with someone who has Alzheimer’s can be stressful without some advance preparation to manage expectations and develop a list of activities and conversation topics. The goal is to create conditions where everyone – the patient and the visitors – can experience the pleasure of just being together.

A pre-visit discussion (in person, by phone or on the internet) among those who will be joining the person with Alzheimer’s can help set expectations and plan activities. Agree to keep in mind that the priority is to ensure that the person with Alzheimer’s has a good time – whether that means enjoying the entire visit or just experiencing a few, separate moments of joy while you’re together – and that achieving this goal may require some adjustments to the family’s traditional celebration activities. For example:

  •  Stick to the loved one’s current routine so that the visit isn’t disruptive or confusing. Big surprises don’t always work well for a person with Alzheimer’s.
  • Consider changing the traditional family Christmas dinner to a brunch or lunch, when Aunt Mary is less tired.
  • Reduce the number of people in the gathering, and allow others to help by bringing food.
  • Focus on activities that are meaningful to the loved one, such as having a holiday sing-a-long of familiar tunes; reading short, well-known holiday stories; or looking through photo albums.
  • Plan time for breaks, rest and respite throughout the holiday preparations – for yourself, for the loved one with Alzheimer’s, and for the loved one’s caretaker. For extended visits, slip away for a few minutes or a few hours when you can to regain your perspective.
  • Allow Grandma or Grandpa to help in a way they can be successful, whether it’s setting the table (who cares if the fork ends up on the right or if you have to get up during dinner to retrieve a forgotten utensil?), helping wrap gifts (if cutting and taping is too difficult, try suggesting he or she put stick-on bows onto gifts) or decorating cookies or the tree.

If your loved one lives in a care facility, think about celebrating by joining activities already planned by the facility, or by bringing a long-favorite dish to enjoy together.  Come prepared with a few much-loved family holiday stories to re-tell or a few traditional songs to sing.

Even in the early stages of Alzheimer’s, the loved one may repeat himself often or have trouble following conversations.  If telling a story again and again makes Aunt Mary smile or even laugh out loud, or if the inaccurate facts she keeps repeating are not relevant to how she feels at that moment, the best reaction may be simply to enjoy the retelling and ignore the discrepancies.  It may help to remember that Grandpa’s behavior, mood and memory changes are due to the disease, and not something that he can consciously correct. Once lost, the brain connections destroyed by Alzheimer’s don’t repair themselves. Over time, Mom simply does not realize her missteps; correcting or berating her will not help improve her memory.

For loved ones you don’t regularly see, determining whether the memory loss is due to Alzheimer’s or another condition can be difficult.  The Alzheimer’s Association posts numerous resources on its website, www.alz.org, including the 10 signs of Alzheimer’s and the seven stages of the disease.

The Association also offers Alzheimer’s Navigator™ (www.alzheimersnavigator.org), an online tool to help caregivers and people with dementia evaluate their needs, identify action steps and connect with local programs and services. Users can reassess needs and adjust care plans as the disease progresses. Additionally, a social networking community called ALZConnected™ (www.alzconnected.org) enables caregivers and people with dementia to connect and communicate with others who understand their challenges 24 hours a day. Members can pose questions, offer solutions, create public and private groups and contribute to message boards. The Alzheimer’s Association also operates a 24-hour helpline at 1-800-272-3900.

Living with Alzheimer’s peaceably often means just enjoying the moment at hand. And when it comes to spending time with family and other loved ones, that may be the best advice of all.

Teri Shirk is President and CEO of the Alzheimer’s Association of Greater Kentucky and Southern Indiana.

 

 

“Shaboomaha” – A made-up word to make up for loss of words

Dear Family and Friends,

Today is World Alzheimer’s Day.  In many ways, it’s just another day in the fight against Alzheimer’s, but in other ways, it’s a chance to focus on the little things about Alzheimer’s that make it so difficult. Fortunately, there is often a way to find joy along with the sadness and frustration of this disease.

Below, Barbara Webb graciously shares another recent experience as she and Al continue to face their future with Al’s Alzheimer’s disease.  I love the way they handle the questions and frustrations that the diagnosis, and that living with Alzheimer’s, has raised in their lives.  She is so honest, and yet so very graceful.  I hope reading this brings you a smile and a bit of hope, and that it is also a little reminder about how important support groups can be to helping you face life with Alzheimer’s.

We know it is normal for Al to forget words when trying to express himself. Sometimes it takes awhile for me to fill in the blanks, but I usually am able to do that. 

I have recently become concerned because, more and more, I am having trouble coming up with a particular word I am trying to think of when speaking.  Al is not usually able to help me, so I tend to get quite upset with myself. 

I guess in a small way, this is an insight into what those with Alzheimer’s go through all the time.  Of course it worries me that there could be two of us in the same house with this disease, but friends, family and those in my support groups all say it is the stress I am under that causes my mind to go blank and leaves me unable to think of a word. 

I am going with that (otherwise, I will probably go nuts!!)  But I have to admit that I don’t handle it very well when this happens.  I get quite frustrated and angry. And that only makes it more difficult to think straight (another insight into what our loved ones deal with on a daily basis.) 

Out of the blue one day when I was trying to come up with a word, “Shaboomaha” came out of my mouth.  I have no idea where it came from, but Al and I looked at each other and cracked up laughing.  So from then on, whenever I can’t come up with that word I am looking for, I just say “Shaboomaha” and it immediately eases the tension and makes us relax.  By the way, usually when I relax I remember what I wanted to say.  Once again, it reassures us how important humor is in our lives, especially when dealing with a devastating disease like Alzheimer’s.  Try it and let me know what crazy word you come up with to get past the frustrations!!  

I agree with Barbara that humor is a very useful tool to ease stressful situations. I use it with my children to diffuse anger and frustration, and also at the office. My grandmother used to say, “Oh Fiddlesticks,” and I tend to spout out, “Clearly, I need retail therapy.”

If you’d like to learn more about Alzheimer’s and how you can help us in the fight to find a cure and the effort to ensure local support groups are available to those facing the disease, please visit www.alz.org/kyin.

Bonnie