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.

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.

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.

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.

This public seminar is for seniors and persons with disabilities as well as lay persons who provide their care or manage their financial or legal affairs. Along with information, free power of attorneys and advanced directives are provided for people age 60 and older.

The seminar for lay people is on Wednesday, July 30, 2014 at Via Health Fitness and Enrichment Center, located at 1717 Dauphin Street, Mobile, AL 36606.  Times:  9:00a.m. – 12:00p.m. for seminar, 12:30 – 4:30pm for free power of attorneys and advanced directives.

The seminar for professionals is on Tuesday, July 29 from 9:00a.m. to 4:00p.m. at the Via Center and on Thursday at the James Nix Center in Fairhope.  CEU’s are available.

The seminar speaker is Clayton Davis, Attorney at Law, who has over 35 years of experience with nursing home Medicaid and other public benefits and probate matters.

For more information, call the Area Agency on Aging at 251-433-6541.

Cheryl Carmichael has written a comprehensive guide for caregivers, entitled “Dare to Care: Caring for our Elders”. From her experiences while working with the Area Agency on Aging in Phoenix, with the Texas Department of Aging and Disability Services, with the Arizona Department of Health Services, and as caregiver of several family members, she has covered all areas of concern to help keep loved ones living in their own homes as they age.

Written in a conversational manner, her insight for day-to-day activities for memory care loss are relevant, including the essential life story format. She suggests the life story be limited to one page and kept handy so caregivers can be familiar with the person, providing dignity and respect. Her list of meaningful activities for advanced dementia is spot on.

A clever bed bathing guideline is provided along with easy to understand definitions of every caregiving term or actions required for good care. Meal planning ideas, home safety tips, and organizing medical records are covered for individuals who may only require supervisory care to persons who need hands on end of life care.

Finally, she lays out the importance of preparing in advance essential estate planning requirements to carry out long-term care. Funeral planning is also covered in detail.

This guidebook is a practical tool for new or experienced non-professional caregivers. Kept handy for reference while wading through the unfamiliar details of care can provide clarity and instruction for necessary preparations still needed. “Dare to Care” is a good resource for caregiving support or a thoughtful gift for anyone brave enough to dare to care.

This book can be ordered in bulk from Cheryl@DaretoCareElders.com , online at amazon.com , or at your local bookstore. Also available as an e-book on Kindle.

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.

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.

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.

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!” 

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”.

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.

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.

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.

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.

After 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.

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!

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).

We wish you a merry Christmas wherever you are! May God give you the grace to enjoy precious moments by going with the flow presented today.  Smile and be thankful that you are trusted with the gift of loving someone unconditionally in your life.

Thank you for visiting this site.  If you have any questions concerning your journey with someone with Alzheimer’s Disease that is not already addressed in the previous pages, please leave a comment after any post.  I will receive those comments and be able to answer you directly or post some information that you may find helpful or direct you to the answer if I can.

I hope you will communicate with me on a regular basis so we can get a conversation going.  I welcome your experiences, trials, successes and resources.  Don’t be shy, I’m waiting to hear from you.

Do you have a question to ask, suggestion, referral, or recommendations to make? Here is the place to do it.

I welcome any comments that you have.  Either write your comment after any post or e-mail me at beth@caregiversunite.org

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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.