The September 14th Educational Dementia Support Group Meeting will have presenters Clare Carter, Pharm.D., and Elizabeth Steadman, Pharm.D to talk about dementia medications.  The meeting starts at 10:00 AM.  Complementary care is provided during the meeting.  Please call 251-435-6950 for more information.

E.A. Roberts Alzheimer’s Center is located at 169 Mobile Infirmary Blvd, Mobile, AL  36607.

Kyla G. Kelim, Esq. brings her elder law expertise to the next E.A. Roberts Alzheimer’s Center support group, entitling her presentation, “Financial Caregiving – A Caregiver’s Checklist.”  The essential information is crucial to the toolbox of any caregiver. Make plans to attend on July 13, 2017 at 10:00 A.M.  Complimentary care is available during the meeting.  Located at 169 Mobile  Infirmary Blvd, please call 251-435-6950 for more information.

Life in a nursing home can become mundane after many hours of sitting still, day in and day out, while parked in a wheelchair in front of or within earshot of television after the basics of dressing and eating are accomplished, often empty-handed, left to one’s imagination.

As I joined my mother on a daily basis to help pass the long afternoons, we often found ourselves in the dayroom of the wing where her room was located, along with other residents who were also passing the time. Although I was a family member – a visitor – I was such a regular presence, that I felt as if I lived there, too. After all, I was subject to the ebb and flow of activity, while attempting to accommodate where my mother should be in order to receive the care she was scheduled for. If I took her away from her area at the wrong time, she might miss being checked for wet pants or something important like that, so we often stayed around and visited with whoever might be present. Usually, our neighbors from the hall were also in limbo until something might come along to create a diversion – like the ice cream cart or an arrival of a new resident that we were all alerted to over the loudspeaker by the announcement, “Let us all welcome the new admit to, say, the East Wing, let us all welcome the new admit to the East Wing.” This revelation was always met among the residents with head shaking and looking at each other incredulously as we all wondered about the new admit. Once again we were reminded that we were viewed as “admits” without a name. Not people or neighbors, or friends but “admits.” I’m sure there was some privacy policy being followed here but eventually, we would get to know the person’s name. Why not just go ahead and say it.  Just once. But it was never to be.

It didn’t take long to realize that the initial loss of identity would remain. However visible you really were didn’t hinder how routinely you were overlooked. Even though this day room was within sight of the nurse’s station and was adjacent to the hall with staff going to and from, we rarely received eye contact from any of the passerby’s.

So, one day, I decided to test my theory that we existed in what has been referred to as “the land of the living dead”.  I viewed my self-imposed status of nursing home resident with Alzheimer’s disease much like joining a leper colony. We had our own community, removed and distinct from where we once lived. We had suffered the grief of our loss of recognition and position in society, but in this safe harbor, where the promise of care and understanding by the marketer on our original tour of the nursing home was assured, would we have to endure being invisible here as well?

William James’ said, “No more fiendish punishment could be devised, were such a thing physically possible, than that one should be turned loose in society and remain absolutely unnoticed by all of the members thereof.”

We were all in a back hall being given the basics of care but were we seen? Did anyone really care who we were or what we wanted or needed?

I had in my big bag of goodies a package of stick-on mustaches. I often brought in an assortment of potential activities in case the time was right for a game of cards, magazines, watercolors, brushes, a pad of paper and a blue-tooth speaker to connect with my smartphone for endless choices of music that we would use for our own entertainment and for anyone else who might be interested.   So on this particular day, I decided to see if anyone would notice if everyone in the dayroom was wearing a mustache. I was tired of feeling overlooked and rejected and I just wanted to see what would happen. After getting permission from my fellow conspirators, we each picked out the preferred style of mustache and stuck them under our noses – and waited. We giggled and amused ourselves with how we looked and I snapped photos (another breach of privacy but since no one was looking…) Yet, as the staff went to and fro, no one looked in to see us.

After a while, we grew tired of our little joke. The excitement waned as we realized no one was taking the bait. Seeing that one mustache had become something to chew on like a piece of candy, I retrieved them. Our experience supported my theory, confirming that we did exist in our own little world, unnoticed and ignored. As much as we were making the most of our interactions among ourselves, society around us was so busy and focused, that they missed out on our mischief that day and so many more. “Fiendish punishment,” indeed.  The regular feeling of isolation and rejection wears on a person, slowly dimming the light of hope and expectations until the lights finally go out.

I recently heard a speaker tell about “the 90-second rule.” Where staff in a residential care facility were required to spend 90 seconds with every resident they encountered, speaking positively and warmly before they went on with their duties. I needed that kind of encouragement as a family member who was responsible for the welfare of my mother whom I had given over to their care. Not only did I want my mother to feel included, recognized, and valued, but as a caregiver, I needed validation and acceptance as well.

To be fair, I always tried to empathize with the staff, especially the CNA’s.  They were the least educated, the least paid, yet held the most influential position for setting the mood and quality of life for each resident.  No one was more intimately involved with the residents. They did the dressing, bathing, providing all acts of hygiene, feeding, and helping. It was no wonder that they didn’t want to look over at a resident they had already tended to.  Maybe they wanted to avoid the endless requests for something or general confusion about what was happening and “where am I” and “when am I going home” questions. Yet, I was keenly aware of their understanding or lack thereof of how to interact with someone with dementia.  Correcting, disregarding, and speaking about them as if they couldn’t hear was upsetting to watch and I often hoped that by demonstration, things would change.  Perhaps they would see that I could brush my mother’s teeth without any resistance from her and thoroughly clean out her mouth of all lingering food. Didn’t they realize that it took some time and effort to warm up to my mother rather than expect her to perform on command?  Maybe they would see the positive reaction to music instead of promoting the noise from the afternoon programs on television that may have been perceived as reality. I often wrestled at night, trying to come up with a new approach that might build a bridge to improved communications and care for my mother.  Several times I brought in baked goods, provided meals of pizza and fixings for two shifts of care, shared citrus fruit from my tree to show my appreciation and for a time, kept a supply of granola bars and candy in my mother’s side table drawer as a treat for the CNA’s unsung efforts. There were some very nice exceptions that I always hoped would appear at the beginning of the next shift, but the steady stream of staff changes made each day unpredictable.

Despite my efforts, sometimes I was treated as a bother, in the way, or just not visible. Just like the residents, I often hungered for someone to smile at me and treat me like they were happy to see me. So my closest allies became the other residents, those who were lining the halls as I passed to enter and exit the long pathway to my mother’s room. In time, I found ways to connect to residents and staff that would make my life better.  But what about the residents? Would life improve for them, too?

The mustache test validated what I already knew. It is possible to be alone in a crowded place. The greatest punishment is to go unnoticed by society yet with a little intentional effort that can be changed.  You don’t have to have all the solutions to someone’s trials to make a difference.  Sometimes all it takes is a smile, a kind heart, and a listening ear.

My time with our neighbors in skilled care over that 4 year period were some of the richest personal interactions I’ve ever experienced. My hope and purpose in writing this are that in all circumstances, especially for the many who are living with Alzheimer’s disease, we take the time to see one another for who we have been and who we really are now, enjoy one another through those encounters, and embrace the present as the gift it is.

If you haven’t heard Brian LeBlanc’s “Up Close and Personal” story of his experience with Early Onset Alzheimer’s disease, this is your opportunity.  The E. A. Roberts Alzheimer Center holds it’s monthly support group on the second Thursday of each month at 169 Mobile Infirmary Boulevard at 10:00 am. That’s November 10, 2016.  Complimentary care is provided during the meeting.

                                                                        251-435-6950     |      fax  251-435-6940

People living with AD are often reluctant to reveal their challenges, even if they have a

diagnosis, as they and their families are aware of the stigma attached to dementia. Although AD

is the sixth leading cause of death in the US, there is no known cure, or even a way to slow down

the disease. The outlook is often viewed as hopeless, social withdrawal occurs, and loss of

independence is close behind.

The Sigma Kappa Sorority – Lambda Alpha Chapter of Springhill College brought the disease out into the open with

their annual “Sigmalympics” event on campus. The field day may have been all fun and games but the

admission fees collected are given to the Sigma Kappa Foundation, who in turn combine all

Sigma Kappa donations nationally to reach the pledge of one million dollars to the Alzheimer’s

Association-Women’s Research Initiative. This is the third year for the Springhill Chapter to

raise funds and also volunteers to help with the Walk to End Alzheimer’s.

The second annual Mobile Walk to End Alzheimer’s will be held at Langan Park on November 5,

2016. Reigning as Walk Chairperson for the second year, Jackie Woodward Barnett feels the

Walk is an important aspect for educating the public about Alzheimer’s disease. As General

Manager at Homecare Companions in Mobile, Mrs. Barnett sees first hand the fear and

uncertainty in her client’s families and how they are all affected when a loved one shows signs

of dementia. Soon after the 2014 Walk in Fairhope, her stepbrother received an Alzheimer

diagnosis. More determined than ever, Mrs. Barnett wants to do what she can to help end

Alzheimer’s disease.

Mrs. Barnett says, “We’re hoping for a great turnout on Walk day at the Mobile Museum of Art

parking lot where teams of people wearing purple will gather for community support, gain

valuable resources, enjoy the Excelsior Band and unite for a common cause – an end to

Alzheimer’s disease.”

The Alzheimer’s Association is the world’s leading voluntary organization in Alzheimer’s care,

support and research. AL/FL Panhandle Chapter activities and resources may be found at

www.alz.org.

E.A. Roberts Alzheimer Center of Mobile Infirmary presents “Caring for Yourself While Caring for Others” by Pro Health Fitness Team on Thursday, October 13th at 10:00 am.  Learn how to take steps to preserve your own health and well being by attending this support group which meets every second Thursday of the month. Complimentary care is provided during the meeting at 169 Mobile Infirmary Boulevard, Mobile, AL.

                                                                        251-435-6950     |      fax  251-435-6940

Mobile County Sheriff’s Office will present the next Educational Dementia Support Group with information concerning safety.  Topics will include Project Lifesaver, the Yellow Dot Program, and Senior Fraud Protection. The meeting will be held at E. A. Roberts Center at 169 Mobile Infirmary Blvd in Mobile, AL on Thursday, August 11th at 10:00 am.  Complimentary care will be provided during the meeting. Call 251-435-6950 for more information.

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.

Enhance your skills and knowledge of caring for a loved one during this FREE One-day course.

caregiver college May 21-2