Hope With Me

March 29, 2015 at 10:38 pm

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As I walked down the hall towards my mother’s room in the nursing home, I passed a woman who used to live across the street from us in the old neighborhood.   She is also a resident, due to her failing health and cognitive decline, so I always take a moment to chat with her. Today, as I paused, we held hands as a sign of our close friendship. She asked, “Has your mother found her mind, yet?” Taken back by her question, I replied, “I hope so.” Quickly she answered, “I hope so, too.” I began to walk away, then turned and said, “Thank you for hoping with me.”

Surprisingly, that day was the beginning of my mother’s improved clarity. She has maintained her ability to make eye contact, reach for her favorite soft toy and even nod her head in answer. Over the last two weeks, several of the staff and even my sister have commented on her improvement.

I realized that I haven’t expected my mother to improve, only to decline.

Today, someone reminded me of a scripture that made me think of how I’d accepted my mother’s fate and possibly even my own. It took my little friend to put the idea in my head that I was able to hope for more. Not only hope but expect. 2Timothy 1:7 says “For God has not given us a spirit of fear, but of power and of love and of a sound mind” ( NKJV).

Thank you, sweet friend, for pointing me toward hope for a better day and not just accept the death sentence of an Alzheimer’s diagnosis.

My friend with Early Onset Alzheimer’s disease has this tattooed on her arm. “While there’s life, there is hope.” Agreed. Hope in this life and for the next.

A Bridge was built today.

March 8, 2015 at 9:04 pm

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Today I determined to build a bridge. Momma is now in the bed when I visit which makes it difficult to get into her field of vision. Leaning over the rails becomes tiresome and hard on the back. Although I play music for her and give her a drink, we do very little real connecting. We are at the place where Validation Therapist Naomi Fell interacted with Gladys in their viral videoed encounter. Inspired by her teaching, I decided to give it a try.

 

I let the rail down on her left side and got in bed with her. I began to sing to her. Momma’s eyes are generally half-mast, one open more than the other. I stroked her cheeks as Naomi had done, as a mother would do with an infant. Momma closed both her eyes in response and seemed to be enjoying the moment. I continued to sing until I had exhausted everything that came to mind. Then I said the Lord’s Prayer. By now, both her eyes are completely open and it seemed on occasion she is almost moving her mouth to speak. Since the bookcase is within easy reach of the bed, I got my folder with poems, songs, and sayings. I read everything to her – even some speech therapy familiar sayings. Then I recited Mother Goose rhymes to her. I had her complete attention.

 

I got the photo album that is her life story and showed her pictures of her growing up and her sisters. We moved to her later life, her children, etc. I showed her a large framed photo of the antebellum gown she skillfully made for me, pictures of my children and recent ones of her. Her eyes followed my movements.

 

I talked to her about what I was making for dinner. I told her the kind of birthday cake I was making for her as her birthday is in six days. She watched me as I adjusted the bed rail and moved to the other side of the bed to put on my coat and scarf.

 

Before I left, I said, “I love you, Momma,” and leaned in to kiss her check. She turned her head and made a face of refusal like a child would with an older adoring relative. I laughed and said, “What a face.” She turned back and looked at me as if to say, “you know we don’t do that in our family.” Which is so true. I don’t know what I was thinking. It was so her.

 

A bridge was built today.

Opening the door to opportunity.

November 24, 2014 at 8:24 pm

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Sometimes when opportunity knocks, it takes a while to sort out the answer.  I have mulled over such an answer for some time now.  I refused the offer at first, but it was always in the back of my mind.  I tried to find someone else to seize the opportunity, but none prevailed.  I continued to consider the opportunity, making it a regular topic in prayer, and I looked for confirmation for a decision. While on a recent trip to the Smokey Mountains, my husband took this photo of me, relaxing in the warmth of our porch.  When I saw the photo, I found the answer that I sought.

A purple beam from above seemed to shine down upon me.  Purple?  Really?  The color of my watchband, my luggage, my purse, many of my clothes and accessories – the color I have worn for the last several years to represent the millions who are living with Alzheimer’s disease. Not that a beam of light was the main reason to help me decide, it was just more of a sign.  Okay, I thought, I’ll do it.

I’ve accepted the job of Ambassador for the Alzheimer’s Association for our area (AL 01).  That means I’ll be more vocal about the needs of families living with AD.  It means I’ll attend the Alzheimer’s Association Advocacy Forum in Washington, DC again this year and speak up in Montgomery when the time comes.  I want to see change in the many ways we serve and live with people with dementia.  May God bless all our efforts and inspire us to make positive changes.

Remembering what is lost is keenly felt during the holiday season.

November 15, 2014 at 10:18 am

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It never gets any easier to walk away from my mother after a visit at the nursing home. Today was no different, although it is Friday, which means I won’t be back until Monday. I take the weekends off, confident that my sister will fill the void of the two afternoons while I have the luxury of staying home.

We visited the big activity room today, after the scheduled events had waned. Momma’s friend, Bobbie from her old neighborhood, spotted us from across the room and raised her hand in a wave to come to her. She had participated in the Thanksgiving themed plan of receiving cards from schoolchildren and drinking hot apple cider. The cups and napkins still sat on the table in front of her.

I pushed Momma’s wheelchair over to her and she greeted Momma, saying hello and waited for a response. Having been a nurse, she understood that Momma probably wouldn’t say any words but she still gave her the opportunity. I sat down in a chair and pulled Momma in close to Bobbie. Bobbie told me she wanted to go home. She was going to call a taxi and have them take her home.” If there was only someone there who could pay”…she broke off as tears overwhelmed her words. She thoughtfully reviewed all that was left of her family– and she named her children, leaving out her deceased husband’s name. I held her hand as she felt the wave of emotion take her to a sorrowful place. I sat there, feeling the sadness of time gone by, as I considered what I might say next, hoping I would be sensitive to her feelings. I handed her a tissue from Momma’s stash and she dabbed her face dry.

I asked her what she missed about her home. “Everything,” she declared. “Yard work?” I asked. “Yes!” she said. “Cleaning house?” “Especially cleaning house,” she emphasized. I asked her who cooked Thanksgiving dinner. “I did!” We then reviewed what her favorite menu was. “Turkey and dressing”, was her quick response. Ambrosia salad (we discussed what was actually in ambrosia salad and decided it was pretty tasty), potato salad, little green peas (a nearby resident added it had to be the tiny peas) and Bobbie agreed. Would there be gravy for the turkey and dressing? “Absolutely.”  What about dessert? “Oh, well, this year it will depend on what Morrison’s has to offer” (a nearby cafeteria). She knew for a fact that they would have sweet potato pie-her favorite.

I pulled out a satsuma from my purse, as all this talk of food was making me hungry. I offered one to her. The activity person saw me giving her food and announced that maybe she could have it, but she thought she required a soft diet. What did she have on that breakfast outing recently, she mused, loud enough for the entire room to consider with her. “Oh yeah, she ate cereal, it’s okay, I guess she can have it.” Bobbie looked at me and said, “I guess I can have it.”

I gave it to her and she put the fragrant citrus orb to her nose. She commented that she thought that she had a satsuma tree in her yard. I agreed that I thought she did. I took out another one from my purse and peeled it into a napkin. I fed one section to Momma, then a section to me. Bobbie commented that she liked that I fed Momma. We continued eating until it was all gone. Remarkably, Momma used the tissue I had placed in her hand to wipe her own nose. She was making an effort as we were in the company of someone who knew her from a previous place. Bobbie peeled her satsuma and shared it with a resident who came over, wanting a piece.

Then she took a section and reached over and offered it to Momma’s mouth like I had. I pulled Momma closer to Bobbie. Momma took it. After Momma had eaten it, Bobbie offered her the last piece. Momma ate it, too. Bobbie smiled with satisfaction and placed the orange peel into the napkin in my lap.  I saw that Bobbie enjoyed the act of giving and caring as much as I had enjoyed seeing her seize the opportunity.

It was getting close to four o’clock so we decided to go on back to the room. We left Bobbie sitting alone, since all the other residents had been delivered to their rooms, so the janitor could fold up the tables and clean the floor.

I felt her sadness again as she watched us walk away. Much like that same sadness I feel, knowing things will never be the way they used to be, as I leave my mother in her room, alone, uncertain, and vulnerable to the folks I entrust for her care.

 

 

Creative Mysteries – Will We Find the Solutuion?

October 3, 2014 at 11:09 am

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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.

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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.

AL.com blog post: Eastern Shore Walk to End Alzheimer’s

August 27, 2014 at 1:03 pm

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:IMG_6804 IMG_6807 Walk_to_End_Alzheimers

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.

Lessons Learned at a Memory Bridge Retreat at the Tibetan Mongolian Buddhist Cultural Center

June 21, 2014 at 5:34 pm

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The following story begins with carefully selected strangers who ultimately become deeply connected by the Memory Bridge experience. Not only were bridges built toward dementia awareness, a small army of networking, luminous warriors was also formed and commissioned to change the way we listen and respond in our care of people with dementia.

Lessons Learned from a Memory Bridge Retreat at a Tibetan Mongolian Buddhist Center

We began our earliest connections at the airport. My first encounter was with Mary. We recognized each other as Memory Bridge travelers, and began to connect. When the elusive shuttle bus arrived, others trickled out of the airport building and got on board. In all, we had five expectant sojourners making our way to the next check point – The Holiday Inn in Bloomington, Indiana. Some dozed and some looked out the window, while I listened in on a joint phone conversation with 1300 other listeners hosted by USAgainstAlzheimers. I reported what I learned from the call once we piled into the van that would take us to our destination.

Upon arrival, as more people gathered, we were shown our accommodations. Twelve of us were taken upstairs and given our assigned rooms. It was up to us to choose which bed to sleep on. My two roommates and I stood looking at the possibilities. Kathleen took the twin bed in the left corner immediately, leaving Bethany and me standing between a twin and full sized bed. With some hesitation followed by each giving the other the option to choose first, I decided on the other twin. We began our unpacking and exploration of how to share this intimate space.

Soon it was time to join the “circle” downstairs, which would be our place of learning, a place of being heard and hopefully, a place of being seen. Labeled “a place of deepening awareness,” Michael Verde’s Memory Bridge structure unfolded over the next four days. We kept to our schedule, which allowed enough space for all to participate. However, between the travel weariness, anticipation and overwhelming feeling of “how did I manage to get here with all these great people”, we must have looked somewhat haggard, since our sensitive leader took notice and began to work in more breaks in the schedule for rest and assignments.

We were given the opportunity to begin each morning with a walk down to the temple to practice morning meditation. I likened this to Matthew 6:6. The Message version of the Bible says, “Here’s what I want you to do: Find a quiet, secluded place so you won’t be tempted to role-play before God. Just be there as simply and honestly as you can manage. The focus will shift from you to God, and you will begin to sense his grace.” I confess that I am a Christian and although well aware of that teaching, I more often than not, choose to “hit the ground running” on many days, and leave my talk with God to be on the go. However, as to receive all this retreat offered and to follow the schedule provided, and even risk offending God, I made my way to the temple. Led by a Tibetan Monk who spoke broken English, aside from listening to the opening prayer that we followed along in a prayer book, and a few breathing exercises, we sat in the lotus position, eyes closed, in silence for forty-five minutes. Once I got over the realization that he said 45 minutes and not four to five, I accepted the challenge even though I felt the need to move and stretch on occasion in order to endure. I wondered if the monk would correct me or if I was being offensive. I later realized I wasn’t in his mind at all as he had cleared his thoughts – no judgment on the way to Nirvana. Each day got easier and on the last day, I got the revelation that I was willing to do this ritual to please my host but not willing at home to do it to please God. – Lesson number one – take time to meditate in the morning, be still, and know God.

The time spent in our Memory Bridge circle produced many ah ha moments. You could see the light bulbs going off as we related our own struggles and experiences. Michael reminded us to “know less and become aware of more” several times. I kept thinking about that as I went through the day. Interacting with our buddies at Autumn Hills Alzheimer Special Care Center provided opportunity to unpack that challenge and we would return to the circle to investigate our findings. Our charge of “letting go, letting in, and letting be” became apparent in the many stories shared as we built bridges with our buddies and amongst ourselves. Since my return to the Alzheimer wing where my mother lives, I have been interacting with the various residents and staff on a deeper level – listening longer, drawing out meaningful interactions, and being less guarded, yet not apologetic or reluctant by my intentionality.

Within the circle, the underlying theme amongst our most intimate confessions was the feeling of not belonging. So here we were, in the land of misfit toys, sharing our journeys in spite of that longing. We found kinship and acceptance, followed by smiles, tears, clapping, and hugs. However, I most related to Michael’s “Listening Deeply in a Flat World” – a thought-provoking hypothesis of restructuring our social framework. Several quotes used resonated with my lot. Particularly, William James’ “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.” His pointing out that we live in a vertical (pyramidal) social order of “who we are is where we are” caused us to realize we’d probably sized our status up already within our circle and then we were charged to measure what it would be like without that structure. We considered what it must be like to have AD and the exile that ensues. My self-imposed status of nursing home resident with Alzheimer disease has been like joining a leper colony. We have our own community, removed and distinct from where we once lived. Michael referred to this status as “the living dead.” He put his finger on what I’ve been feeling for so long. I have felt removed, isolated, and lonely while caring of my mother.I found that my personal challenge is to stop grasping to convince myself that I am here and that I matter. I wondered if needing to matter is what motivates most of what I write about. Lesson number two –Empathetic listening helps us realize how much alike we really are. Lesson number three – I don’t have to prove myself to feel good about the care I provide for my mother.

My first night with my roommates was very quiet as I managed to get in there after they were asleep and the lights were out. I was grateful for my phone light and for the headlamp I had brought along. I was able to change in the dark for bed and once in bed, write in my journal, wearing the light strapped to my forehead. Thankfully, I didn’t wake anyone. The next night, I was in the light, interacting with my roomies. It didn’t take long to discover that the woman in the next bed had the knack of listening to me in such a way that all the stories I shared about “living in a nursing home” drew peals of uncontrollable infectious laughter. That just fueled the fire, and I found great healing by having this delightful nymph not only listening, relating, and validating but seeing me in a humorous way. The dry desert of my exile into the “land of living dead” began to flow with living water. Up to this point, my source of living water has been the Holy Spirit, who fills and renews me as I pour out to others. However, Jesus knew what he was talking about when he said, “This is my commandment, that you love one another, that your joy may be full”. I remembered as I grew up with my father, mother, and older sister, I was the one who made everyone laugh. I’d forgotten about that little girl and wondered where she is. We stayed up late at the expense of our sleeping roommate who later assured me that she enjoyed going to sleep to sounds of giggling and waking to the sounds of giggling.

Word got around, and with the mention of chocolate, that double bed became the after hours communal circle. What didn’t get said during the day was given the opportunity to be said that night. More confessions were spoken, surprising even us at our ready transparency. Equated with a college dorm experience, we held on to the magic moments until the wee hours of the night. By the fourth night, although the licorice supply was almost depleted and the chocolate was long gone, we added music and the pictures came out to show off our families, pets, and hairstyles. We knew our time was fleeting and this was too precious to pass up – an opportunity to have girlfriends to confide in. The big bed lent itself to comfort, closeness and coziness. However, I remained upon my solitary bed looking over at this cuddly group. Since there was limited floor space in our room, during the day, I kept my suitcase upon my bed. Maybe it stood as a barrier to invitation.   My sweet, welcoming roommate was having the same effect on our visitors that she had on me. She later remarked that they were “piled up like puppies,” as the women enjoyed the closeness. I noticed as the pictures began to post in Facebook, that Bethany had this effect with others throughout the retreat. In fact, she was the one who brought our awareness that “vulnerability is the birthplace of love.”   I was aware of her inclusive ways and intentional interaction with me and appreciated her awareness to my somewhat guarded singular persona. I remember hearing myself quote Maya Angelou’s truth that “people don’t remember what you said or what you did, but they remember how you made them feel”. I appreciate the people who took me aside and gave me encouraging, validating words. My surprise at their kindness made me feel like I’d found that funny little girl who just wanted to help people feel better. Lesson number four – be more aware of how I make people feel. Lesson number five – vulnerability is the birthplace of love.

These two strong lessons are important for all our relationships. I considered my husband and how I must make him feel. I considered the faces of people I interact with in the nursing home, especially the staff. Do I still come across as someone who doesn’t need help? Oh contraire.   I remembered that my sister has stepped up to help when I become vulnerable, rather than the person in charge. The goal of Memory Bridge is “the ability to attend more fully”. I believe I am moving toward that. I embrace care giving as a spiritual practice. At the retreat, I had made the trip into the darkness of my past and the loneliness of not being seen with my fellow seekers, but I don’t live there much of the time. Not only do my visits to the nursing home bring others pleasure, but I thrive on the friendships and interactions I have. I have learned to “stand in a place that we would rather not” as Jane quoted. Pauline quietly shared profound, meaningful thoughts that enforced my belief that “each person is an expert at any given time on what they need” and “that I was attempting to empower the person who is living their life.” I loved what one of the buddies said, ”The only place for a person to really be is with another person.” My most meaningful revelation is in Matthew 25:40 which says “And the King will answer them, ‘Truly, I say to you, as you did it to one of the least of these my brothers, you did it to me” ESV. In my service to the “land of the living dead” I am serving Christ. For me, it doesn’t get any better than that.

When the retreat was over, we took the reverse order of travel, making our way home as different people. We chatted continuously with our friends on the bus, took photos and promised to remain connected. One by one, we parted until there were four of us “girls” going through security. We became playful after the security officer offered to call my friend over the loud speaker while I waited for her to get through. That brought more shrieks of laughter and photo opportunities, as we were all awarded junior officer status with sticker badges. We raced in the hallways of the airport against the moving sidewalk and had a final meal together. Our time was almost up and we lingered as long as we could. My final farewell was to my roommate, Kathleen, as the doors to the concourse closed behind me and I watched her move out of sight. Now we are left with our memories and introspection. What we do with an increased awareness of empathy in listening is wide open. I remembered that our last activity together to close our circle was led by our therapeutic clown. She had us shake our bodies all over and move in close, reach across until we could touch fingers, then lift our hands and throw our energy up into the air with a loud shout. All that we had learned was released and made available into the universe. We are like the lightening bugs that sparkled after dusk when we came out of from our evening meditation – lighthouses that give direction and safety to those with dementia.

I don’t want to ever lose what I felt with the delightful company created at Memory Bridge. I am grateful for Michael’s passion for the pursuit of empathetic listening and bridge building. His ability to put into words what I’ve been trying to express is a relief to me. Hearing his voice and seeing what he inspires, I am hopeful for the many affected with Alzheimer’s disease. Especially knowing the people at the retreat who are on the same page. I say, go Michael, go Memory Bridge, and go people of purpose who attended the retreat. And go to the many who will be inspired as a result.

How have these lessons changed me? On my way out of the Wal-Mart parking lot today, I approached an intersection where a man was sitting in the grass, holding a handwritten sign. I noticed his ruddy face and tobacco stained moustache. I thought, in my usual way, that he might do better by working than sitting in the sun all day looking for a handout. Then I noticed the Vietnam hat he wore. I immediately thought of my buddy back in Bloomington who proudly wore his WWII hat whenever he left his room. I realized that this man held his identity in that hat and hoped to be seen as somebody who once belonged and mattered. I fished out a five-dollar bill and rolled down the window. I confess this is the first time I have responded in this manner to someone on the side of the road holding a sign. He thanked me for whatever I was about to give him. Then he said, “Do you have a family member in the service?” I said, “Yes, my father served in WWII.” “Is he still living?” he asked. “No” I replied. He reported the latest statistic that every 90 seconds a WWII vet dies in this country. He looked at the bill in his hand and said that it would help a lot. I held his gaze and saw him. And for a moment, he saw me.

Alzheimer’s is a costly, dangerous disease / AL.com

May 14, 2014 at 4:08 pm
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By Letters from our readers   AL.com
on April 23, 2014 at 3:17 PM, updated April 23, 2014 at 3:23 PM

Purple is the color for Alzheimer’s disease. On April 9, 2014, I joined more than 800 purple-clad advocates to speak on behalf of the over 5 million people who have AD in the United States. Our mission was to appeal to our members of Congress for action on Alzheimer’s disease.

I am among the 15.5 million unpaid caregivers whose life is radically altered by providing care for my mother and aunt. I oversee their lives daily, handle their finances and problem-solve their every challenge.

Thank you to Bradley Byrne for meeting with our delegation to discuss the Alzheimer’s crisis. It is the most expensive disease in America; nearly one in every $5 spent by Medicare is on people with Alzheimer’s or another dementia, yet there is no cure in sight.

In addition to the human toll, Alzheimer’s costs $214 billion a year. Because of our growing senior population, unless science finds a way to slow progression or delay onset, Alzheimer’s will cost an estimated $1.2 trillion by 2050. More information can be found on alz.org by accessing the 2014 Facts and Figures State Statistics Sheets.

At the recent 26th annual Alzheimer’s Association Advocacy Forum in Washington, D.C., I heard Alzheimer’s advocate Dr. Francis Collins, director of the National Institute of Health, say that we are not, at the moment, limited by ideas, scientific opportunities or by talent. He stated, “We are, unfortunately, limited by resources to be able to move this enterprise forward at the pace that it could take.”

Please understand that this disease is epidemic and could affect almost everyone. One in three seniors dies from Alzheimer’s disease. The number of people in Alabama living with the disease is projected to increase from 14 percent to 24 percent by 2050. Approximately 500,000 people die each year because they have Alzheimer’s disease.

I hope you will join us by putting on your purple and support increased funding for Alzheimer’s research by $200 million in fiscal year 2015.

It is only through adequate funding and a strong implementation of the National Plan to Address Alzheimer’s Disease that we will meet its goal of preventing and effectively treating Alzheimer’s by 2025.

Beth Reinert

South Alabama Advocate for the Alzheimer’s Association

A person to watch – Gina Germany

April 28, 2014 at 5:50 pm

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I recently sat down to lunch with a lady who is making a difference in our dementia community.  She arrived in town 8 years ago with the determination to provide a service agency for the elderly.  She has done that and so much more. To try to understand it all, I had her draw a schematic outline of all the things she has created and directs. All tolled, 380 jobs have been created, providing services in Mobile, Baldwin, Escambia, Washington, and Monroeville counties.

You may be familiar with her Touching Hearts Senior Care, which encompasses in-home assistance, a safe discharge program, case management, and a pop-in service. She also helps veterans acquire assistance from the VA’s Aid and Attendance Benefits and offers a monthly support group.

Ms. Germany is the president of the Gulf Coast Senior Alliance, whose members provide quality and trustworthy care to the senior population on the Gulf Coast.

If that’s not enough, she has developed the non-profit Gulf Coast Dementia Services, Inc.  whose mission is to target the many needs of our dementia community, respite services being high on the list. Since dementia is our country’s fastest growing health concern with no cure in sight, I personally want to commend Ms. Germany on her foresight and determination to enable the many families living with dementia.  This group was responsible for the successful dementia conference featuring Teepa Snow held just this month.

You get a purple angel*, Gina Germany, for all you’re doing for dementia care.

*This Purple Angel symbol can be used by anyone raising awareness regarding dementia. It symbolizes a guardian over those living with dementia, their families and friends, as well as all those working to raise awareness about dementia world wide.

 

Having my say in Washington, DC.

April 14, 2014 at 10:01 pm

Sitting in the Library of Congress, I paused to soak in the celebration of so many authors who made lasting marks with their written words.  My favorite quote of the day inscribed on the wall high above a window read, “Words are also actions and actions are a kind of words.”  Today, my words have led to action.  In August of 2012, I visited Washington, DC.  I toured the Botanical Gardens and struck up a conversation with a Washington policeman who told me of his lengthy career on the force.

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As he handed me an US Capital Police patch, he offered me a special treat:  a tour of the Capital building and to arrange a flag to be flown over the Capital in my name.  I declined, saying, “I’d rather have a flag flown over the Capital to honor those with Alzheimer’s Disease, because of what we’ve encountered by caring for my mother, my mission is to raise awareness for the sake of other families facing this long, sad journey.”   Little did I know that twenty months later, I would storm the Capital with 850 other passionate AD advocates to rally support for families with AD.  By writing my blog, along with various articles and keeping up with local resources for networking, my words got me to Washington as an advocate. My prayer for this trip was for God to protect my travels, put me where He could use me, and to show me favor.  He came through on all requests.

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Surprisingly, as I stepped off the shuttle bus in front of Capital Hill, this policeman happened to pass by.  I called to him, got a big hug, and told him I’d come back, wearing my purple banner with so many other “flag” bearers to speak for those who cannot speak for themselves.  I doubt if he remembered me but I certainly knew him. Prophecy fulfilled!

This wasn’t the first “coincidence” I experienced on this trip. Starting with the plane ride from Houston to D.C., I found a fellow Forum traveler across the aisle from me.

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Once I arrived at the Renaissance Hotel, I went into the Grand Ballroom, amidst a sea of 850 plus people wearing purple.  I looked for a table to sit at for the day.  I randomly chose one, briefly said my introductions and sat down.  Next person to sit down was an outspoken fellow, familiar with the group I’d chosen and declared,” I guess you’ll have to sit with an Alabamian!” IMG_5602

Not only was he an advocate from Alabama but writes for the newspaper as well – Mark McCarter.  These are the people I would later visit two Senators with!  Again, proximity!  Next day, I attempted to meet a Memory People Facebook friend.  I stood before the huge crowd in the doorway, with the phone to my ear, talking to my never before seen “friend”, trying to tell her my location. Turned out, I happened to be standing right by her table!  She said she’d been trying to hook up with another Memory People friend who, lo and behold,  I discovered was in my group, so I led her to connect with our new “friend”.

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As the day of training wore in, I went to the lady’s room to freshen up.  As I stood in front of the sink, washing my hands, I noticed by her name tag that the lady next to me was from Las Vegas.  I remarked that my son’s girlfriends’ father lived in Las Vegas and told her his name.  “Oh, I know him, he is a wonderful person,” she declared. Can anybody say, “It’s a small world?”

To give even too much information, as I prepared myself for the special National dinner by arranging my hair, I asked God to help me make my unwieldy mane look good.  Once ready, I walked the three blocks to the hotel in the early evening air, knowing my efforts would be blown away before my entrance to the reception.  The first person I encountered was a woman from my group who commented, “Your hair looks nice.”  The only hair comment I got all trip.  I had to thank my Lord for watching out for me in the crowd of people, letting me know He was with and  for me. IMG_5657

The “Hill Day” gave us opportunity to navigate Washington like never before.  We had to wait in a line to pass through security to get into the Russell Senate Office Building to visit our senators. We had a great interview with Jeff Sessions’ staff, who took notes as we told our tale of woe, giving her the lowdown of the high costs of care, the high rate of incidence coupled with the low amount of money given for research.  Our meeting was followed by our Alabama Alzheimer Association Director, Kevin Burke, who had an impromptu meeting with Sessions in the hall and speaking to him directly.  Kevin later told us, “that is how it’s done in Washington.” Senator Sessions response was positive toward our cause.

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Next visit was with Senator Richard Shelby, who we met in the hall and had a photo op with after our meeting with his staff.  He told us of a dear friend of his wife, a very smart man who had succumbed to the ravages of AD. He gave us his appreciation of our efforts and his support of the upcoming bills we were promoting.

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As I strolled toward the Rayburn House to find Rep. Bradley Byrne’s office, David, head of the Ambassador Program for the Alz Assoc. stood beside me as we waited to walk across the street.  Seeing the long line, he said to me, “Come on, I’ll show you another, little known entrance.”  So we strolled right in with no waiting through the “horseshoe entrance” which was lined with blooming cherry trees.

IMG_5723IMG_5720 IMG_5721After seeing Rep. Byrne leave his office and not return by our appointment time, I knew we wouldn’t be talking directly to  him after all.  We met with a staffer and accomplished our purpose.  As we walked to the elevator, Rep. Byrne stepped out in front of us.  I immediately hung up on the person I was speaking with on the phone, slide the phone in my pocket and extended my hand, saying, “I’m Beth Reinert from Mobile.  Congratulations on your recent election…” He listened to our story. He gave us his support.  Another mission accomplished with photos to boot.

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Next, I went with Peter Cowley, Assoc. Director of our AL/FL Panhandle Alz. Assoc and Dr. Rodney Guttman, Alz Researcher at the University of West FL, to speak with Rep. Jeff Miller from Florida.  I got to listen to the good doctor argue for the cause of AD.  To think how difficult it’s been to find a doctor who was familiar with AD, and this trip allowed us several meals together, giving me plenty of time to talk to him and have my questions answered.

Satisfied that all had gone well, I sat in the Reagan National Airport, ready to board my flight home, when I saw a familiar face in the crowd.  After so much practice today, without hesitation I walked over to him and extended my hand saying, “You look like the mayor of my city.”  Indeed, he was our own newly elected Sandy Stimpson who I would learn had also met with the same men I had but for other matters. I told him about the upcoming 2014 Walk to End Alzheimer’s in Daphne and in Mobile in 2015.  It was a comfort to have Mayor Stimpson nearby for the ride home and yes, I got a selfie to add to my other photo memories of such a great trip!

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The trip was as I had hoped and better than I expected.  I am thankful to be in this position to speak for the voiceless and to raise awareness of the destruction of Alzheimer’s disease.  Please join me in the fight for better care and support, more research funding and promotion of brain health.  We can all benefit from that.

“If God is for us, who can be against us.” (Romans 8:31 NAS).