I just had my first experience with trying to find a lost person who has dementia.  My neighbor, who lives two blocks away, had fallen asleep on the couch for thirty minutes.  Just enough time for her husband to unlock the back door and disappear.  He has Lewy Body disease.  She provides his care 24/7.   Although he had been at the Adult Day Center today, she was exhausted and dozed off.  He was wearing the Project Lifesaver ankle bracelet that just had the battery replaced last week. She called the Sheriff’s office to alert them.  While she waited at the end of her driveway, she informed a passing bicyclist of her husband’s disappearance.  The rider of the bike is a friend of ours, so he came on to our house with the news.  While my husband got our bikes to join in the hunt, I wrote a quick alert on my Next Door App to tell my neighbors and surrounding neighborhoods of this man’s disappearance. We rode to her house and introduced ourselves.  I waited with her while my friend and husband rode off in several directions, trying to find the missing man.  It was quickly getting dark.  The Sheriff arrived who had the GPS equipment to find the ankle bracelet.  He rode off with the radar tool out his window to try to find him.

Meanwhile, a neighbor who was out shopping saw the Next Door App alert come up on her phone about the missing man.  She and her husband had recently driven out of the neighborhood and saw a man standing at the dark backend of a driveway on their way out.  Putting the alert together with seeing the man, they returned home, checking to see if he was still where they had seen him.  He was. As good fortune would have it, this alerted neighbor just happened to be a police officer.  He was able to bring our missing man home without incident.  He alerted the other officers involved who were searching the neighborhood.

While I was waiting with the wife, we prayed together that her husband would be found without incident.  He was.  The networking of neighbors, technology, and the hand of God, all are safe tonight.

Are you connected with your neighbors with the Next Door App?  It’s free and an excellent tool to communicate quickly. Check it out. And then invite your neighbors.

On a recent visit to Brooklyn, NY to celebrate with my son and his newly pregnant wife, I remembered seeing Cobble Hill Health Center on my last visit in his neighborhood.  It sits on a quaint street just blocks from the Brooklyn Bridge Park.  I had walked past and wondered what lay within the nicely manicured entrance of the red brick building where several folks in wheelchairs sat outside.

Having seen the movie, “Alive Inside”, I thought that name was the place where Henry “came alive” while listening to music on an iPod for the first time. So I reviewed the movie on Netflix and got the name of the Activity Coordinator featured and gave her a call at work.  She was there and we set up an appointment to meet that afternoon.

Taking my film producer/photographer son along (just in case), we waited in the lobby for Yvonne Flunory.  She has been an Activity Coordinator at Cobble Hill Health Center for sixteen years. She loves her work and makes it a family affair. She proudly explained that her daughter comes as a junior volunteer. Under the leadership of Louise Dueno, the Director of Therapeutic Recreation, along with two other Activity Coordinators, Cheryl McNeill and Renée Adamson, they offer the activities for all 364 residents. Forty beds are in the dementia unit.  They were all gracious enough to wait around after a long day to talk with me and my son for an hour. When sharing the bond of dementia care, there is so much to learn, so much to talk about, yet the subjects extended beyond what I expected.

I wanted to know how the release of the movie “Alive Inside” had affected them.  But first, I met Louise Dueno.  She warmly received us in her office and told us of her family connections of caring for her father who had vascular dementia, what it was like for her as she shared the care with her sister, and how he ultimately died.  Then she described the difficulties she had caring for her uncle and how he became a resident at Cobble Hill Health Center. So her professional life blurs into personal enabling her to  understand what families are dealing with. She related an experience she had just that day that gave her some relief that she had made a good decision about placing him in someone else’s care. She understood why I would take the time from a vacation to stop in and talk to her about caring for a loved one with dementia.

Ms. Dueno told me about the The Alzheimer’s Association, New York City Chapter’s Palliative Care for Advanced Dementia: Training and Implementation, called “Comfort First” being developed in their facility with a grant coordinated by Ann Wyatt from the Alzheimer’s Association.  We talked about the Music and Memory Program that became popular after the release of the movie “Alive Inside” which offers certification that Cobble Hill Health Center has.  That means that upon the initial assessment of a new resident, music preferences are examined either from information from family members, popular music from their era, and other background information. She also mentioned how Wisconsin is implementing this program in 250 long-term care facilities, replacing antipsychotic drugs with music for managing behavioral symptoms. She showed me her collection of iPods being charged in her office, her stash of replaceable sponge headset covers, and her two laptops that they use with their residents. We agreed that the direct listening of ones’ favorite music was more effective than a group activity of listening to music as it shuts out all the other noises and distractions.

While we talked, another woman waited patiently to speak to us.  Turns out, she had some information she wanted to share.  For six years, Ammeka Berken has coördinated and initiated volunteer programs with New York Cares, a not-for-profit program that is a clearing house for volunteers in New York.  Since my son lives near Cobble Hill Health Center, she invited him to their recurring programs at the Center:  Friday they take up to ten residents down to the Brooklyn Bridge Park; Saturday is Swing night which is a dance for the residents; then on Thursday evenings they take residents down to hear the live music at the park.  She took the opportunity to spread her mission by including us.

Passion is what drives those who believe in what they are doing.  Whether it is Dan Cohen with his development of the Music and Memory Program, or initiating the “Comfort First” program in residential facilities, or matching volunteers with life changing opportunities, or implementing activities to residents in long-term care facilities, or caring for a loved one, we move by a force beyond our own strength and abilities. The wish to enrich life for another human drives us to do, to pursue, to create, to learn, and encourage others to do the same. It was a delight to meet these passionate people.

Our encounter built a bridge from Mobile, Alabama to Cobble Hill, NY. May we learn from our connection and strengthen the resolve to improve the care for people with dementia.

Do you have parents who have Alzheimer’s disease and you’re concerned that you may soon be developing symptoms yourself?  That you want a cure to be found before it’s too late for you or your children?  There is something you can do.  Several prevention trials are going on that you may be interested in.  In particular, the A4 Study is for people with no symptoms but may have several reasons for thinking they may develop Alzheimer’s disease. The researchers need 1000 people to participate. You may be eligible if you:

• Are 65 to 85 years old
• Have normal thinking and memory abilities
• Have an A4 study partner – someone who has at least weekly contact with you who can answer questions once a year
• Are willing and able to receive IV infusions of the investigational treatment or placebo for 36 months (36 monthly infusions); all A4 participants must be willing and able to participate in all required procedures for the duration of the A4 study.
• Are willing to have your health monitored throughout the study using assessments such as:
  • Memory and thinking tests
  • ECGs (a look at your heart)
  • PET scan (a way to look for the plaques thought to be associated with AD)
  • MRI scans (a way to take a picture of your brain)
  • Blood and urine tests

Click here to Find a location where this trial is going on .  Other trial match opportunities may be found at alz.org.

Our new Twiddle Classic arrived in the mail today. I couldn’t wait to get to the nursing home so I could introduce it to my mother.  After getting the proper name tags heat pressed onto the purple furry fabric, I went to my mother, who had just been laid down for the afternoon.  She was propped up and awake.  I told her she had a present that had just arrived.  She seemed eager and interested.  I presented the purple pal.  She immediately  took it in her left hand and began exploring it.  Her right hand is rather useless, so she picked it up left-handed and put it to her face, held the beads, held the ball inside the “muff” and entertained herself the rest of the afternoon. We both listened to music via my smartphone and a split jack for two headsets. The easy-listening music put her at ease as she took ownership of the Twiddle.   I was so happy to be able to leave it with her.  I informed the CNA’s about her new friend and encouraged them to be sure she has it with her. This is a similar idea of the activity mat which is also well received by my mother.

Perhaps you have some similar ideas that have worked well for you.  Please share.

For more information about Twiddle products go to www.4twiddle.com or call 844-894-3353.

Finding a worthwhile activity is an endless pursuit when caring for someone with Alzheimer’s disease.   The need to provide stimulation for a chair or bed bound person may be satisfied with an activity mat.  They can be purchased or made with great variety and creativity. I enjoyed sitting by my mother’s bedside today while she held onto the beads and other attachments on the activity mat as we both listened to music with our earbuds on.  We were both content and peaceful as we heard easy listening music on Pandora radio.  At one point, she gave a big sigh, while resting her head on the pillow. A nice way to spend the afternoon.

Annie Williams knows first hand what it is to be a caregiver for someone with Alzheimer’s disease.  She cared for her father and now wants to help you with your loved one.  She is a registered nurse with such a passion for care that she opened a therapeutic day program and residential facility called Blue Haven Adult Center.

Offering an array of activities, the staff is confident that their clients and loved ones will find Blue Haven comfortable in their home like setting. They offer a daily structured program to include group sessions focusing on the client’s daily orientation, exercise, current events, nutritional needs, health issues, medications, arts and  crafts, gardening, and family support.  Three meals are provided daily, transportation is available, respite care is provided, and even on-site laundry service is available to assist clients with their personal clothing.

Contact Annie Williams at their location:

1725 Lott Road, Eight Mile, AL by calling 251-408-3740 or email info@bluehavenadultcenter.com.

Visit their Facebook page and like it.

The documentary, “I’ll Be Me” hit home many times as the tears welled up from the deep places I’ve hidden my grief. I could see or hear others in the almost filled auditorium that were experiencing similar feelings. Watching the story of Glen Campbell’s final tour as his dementia progressed was bittersweet. His life’s musical achievements are such a dominant thread in his life that those creative elements remain strong even as words and memories become distant. His ability to sing, read, and play the guitar gave me hope for continued sharing and connecting with the many I know with AD. Mr. Campbell said, “I’m still here but yet I’m gone.” His daughter, Ashley, says in the documentary, “Daddy, don’t you worry, I’ll do the remembering.” Mr. Campbell is fortunate to have close family relationships that know his story so well and can tap into that creative place to draw out communication as his dementia progresses.

Likewise, the artist, Hilgos, is featured in a collection of stories entitled, “I Remember Better When I Paint,” which tells the remarkable uncovering of her intact ability to paint and communicate through her art even after she was deemed “void and with no mind” by nursing home staff and doctors. This effort, inspired by her daughter who responded to her mother’s remark, “I remember better when I paint” hired an art student to prompt this retired artist to once again pick up a brush.

Although this positive response took several months of consistent presence on the part of the student, once the breakthrough came, the communication began. Following 91-year old Hilda’s lead, a memorable relationship developed that changed the course of both their lives. Hilda Gorenstein (Hilgos) returned to creating more works of art to be displayed and appreciated. Although Mrs. Gorenstein is now gone, that young art student, Jenny Graf Sheppard, continues to speak about and research the value of the arts with Alzheimer patients.

Dr. Gene Cohen writes “All of us have certain skills or interests that we have more highly developed than others- usually an area where we have, in some manner, been creatively engaged. The challenge is to help affected individuals find those areas and have an opportunity to tap them. The result is a quality of life that is increased by the satisfaction of being able to use that residual capacity.”1

Indeed, that is the challenge. Not all folks have the obvious talent that Glen Campbell has with his music and Hilgos had with her paintings. It is the mystery to be solved. Often, the duty is left to activity directors or private sitters who have little knowledge of the history of that individual. I am faced with that challenge on a daily basis with my mother and others whom I see whose mysteries remains unsolved.

I hope that Mr. Campbell’s caregivers sing to him those familiar songs that are hidden where memories never die – in that creative place that brings joy and beauty to those who see and hear. I am reminded what is written in Isaiah 61:3-4 “To appoint unto them that mourn in Zion, to give unto them beauty for ashes, the oil of joy for mourning, the garment of praise for the spirit of heaviness; that they might be called trees of righteousness, the planting of the Lord, that he might be glorified. KJV”.

When the creative is tapped, life is brought forth. Instead of the blank, “nothing is there” diagnosis, beauty is uncovered and rises from the ashes. Joy comes from that discovery, however brief, and thanks are given for the moment shared.

May we become more sensitive to the remaining qualities of those living with AD, recognize what they are and be sure to tap into that wellspring of life that remains.

Creating awareness of Alzheimer’s disease and offering emotional support is a goal of the Volunteers of America and of the Mobile Museum of Art “Keepsake” Program. Both recognize the growing need in our community and the coming tsunami of diagnosed cases that we are not prepared for.

To learn more about the Campbell’s effort to create awareness, go to glencampbellmovie.com.

To learn more about Hilda’s Gorenstein’s story, go to www.hilgos.org

1Cohen, Gene D. M.D., Ph.D. (2011). Creativity and Art in Promoting Health and Coping with Alzheimer’s in I Remember Better When I Paint, Berna G. Huebner, Editor.

         GLEN CAMPBELL…I’LL BE ME

Volunteers of America Southeast along with sponsors Mercy Medical and Providence Health System is proud to present a private advance screening of the award-winning documentary, Glen Campbell…I’ll Be Me.

The documentary is a powerful portrait of the life and musical legacy of the great American musical icon known for hits including Rhinestone Cowboy, Wichita Lineman, and Gentle on My Mind. After being diagnosed with Alzheimer’s disease, Campbell and his wife, Kim, went public with the diagnosis and announced his goodbye tour. Glen Campbell…I’ll Be Me documents Glen and his family’s attempt to navigate the wildly unpredictable nature of the progressing disease using love, laughter, and music as their medicine of choice. The film also features those who know and love Glen, including Bruce Springsteen, Bill Clinton, The Edge, Paul McCartney, Jay Leno, Vince Gill,

Jimmy Webb, Blake Shelton, Sheryl Crow, Keith Urban, Brad Paisley, Steve Martin, Chad Smith and Taylor Swift, among many others. Rare vintage footage and extraordinary new performances of Campbell’s most beloved hits immerse this moving cinematic account in the overwhelming talent of this humble family man.

Thursday, October 2, 2014
6:45pm – Glen Campbell…I’ll Be Me

St. Luke’s High School Auditorium

1400 University Boulevard South

Mobile, AL 36609

For FREE tickets visit www.mobilemovie.eventbrite.com

Or call 251-338-1294

Volunteers of America Southeast is working with the producers of the new documentary film Glen Campbell…I’ll Be Me to raise national awareness of the challenges facing Alzheimer’s patients and their caregivers, and those who have the emotionally and physically challenging job of caring for them. In partnership with Mercy Medical and Providence Health System, Volunteers of America Southeast is proud to offer this advance screening to our community.

See  AL.com press release and then read the original below.  Thanks, AL.com for getting the word out.

Check it out.

However, here is the complete article:

EASTERN SHORE WALK TO END ALZHEIMER’S

It wasn’t supposed to be this way. At the age of 84, retired nurse Peggy Sagan of Fairhope, Alabama, never imagined that she would be observing the care of her own daughter, Pat. Especially since her daughter had excelled in nursing, pursuing degree after degree to become an instructor and mentor to so many. Peggy didn’t want to believe that Pat had become the victim of early onset Alzheimer’s disease at age 50. However, with no cure in sight, Peggy does what she can. Accompanied by a faithful friend, she makes the weekly trip to Biloxi, Mississippi, to visit Pat, who lives with her husband and two sons. Pat was diagnosed with Alzheimer’s 8 years ago and now receives care from not only her husband and family members but also from hospice.

Because of the distance between Fairhope and Biloxi, Peggy can’t help her daughter as often as she’d like. Instead, she volunteers at the Adult Day Respite called Shepherd’s Place, located at the Fairhope Methodist Church. The Director of Caring Ministries of the church, Dr. Ann Pearson, established Shepherd’s Place out of her own experience of caring for her mother, who for seven years lived with Alzheimer’s disease. What started out as a two day a week respite to support caregivers in 2009 has doubled to four days a week, with 35-40 volunteers to help run the program.

The team at Shepherd’s Place is preparing for the upcoming “Eastern Shore Walk to End Alzheimer’s,” which will raise awareness of the growing population of people living with dementia. After all, 93,000 Alabamians are estimated to have Alzheimer’s. Of Americans age 65 and older, 1 in 9 has Alzheimer’s; for those age 85 and older, 1 in 3 has the disease. Another American develops Alzheimer’s disease every 67 seconds. Due to the large number of Americans suffering from this disease, purple is becoming easily recognized as the color to support Alzheimer’s disease.

The Walk is designed to raise funds to further the care, support, and research efforts of the Alzheimer’s Association. Although there is no registration fee, all walkers must register and are encouraged to make a donation to join the fight against Alzheimer’s. The event will begin at the Fairhope Pier on September 20, 2014. Registration opens at 7:30 a.m., the ceremony begins at 8:45 a.m., and is followed by a two-mile walk through Fairhope.

Shepherd’s Place will have a booth set up to display colorful art projects participants have made. Other informative booths representing resources available in our area to families living with Alzheimer’s disease will be featured. Fairhope’s own Andy Luedecke of Synergy Home Care is the force behind the Walk along with many volunteers who are dedicated to make life better for those living with Alzheimer’s disease.

Registered walkers will receive a “promise garden” flower in the color that best represents their connection to the disease. Peggy will be given a yellow flower as she currently supports her daughter, Pat. Ann will have a purple flower as she has lost her mother to the disease. There will be blue flowers for people living with the disease, and Andy will have an orange flower as he supports the cause and a vision of a world without Alzheimer’s.

The Alzheimer’s Association “Eastern Shore Walk To End Alzheimer’s” is promising to be an anticipated annual affair for the entire family. To be a part of this inaugural event, put on your purple attire and join in. Everyone has a reason to end Alzheimer’s.

For more information or to register online, go to act.alz.org.

Written by Alzheimer’s Association advocate, Beth Reinert, of caregiversunite.org.

The Mobile Museum of Art is offering a free workshop for loved ones and caregivers dealing with early stage Alzheimer’s disease.  Art has the power to touch some of the deepest parts of memory.  Through specifically designed gallery tours, art activity training, and the vital experience of Alzheimer’s professionals, participants are provided with the tools to make meaningful connections through art-making and appreciation.  After the training workshop, participants may volunteer in the Keepsake Tour Program at the Mobile Museum of Art.

Training workshops will be held September 8, 10, 15, 17, 22, and 24. (Mondays and Wednesdays)

6 -8 pm

Free to the Public

Preregister for Keepsake by September 1, 2014.