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The 99th birthday of a dear relative was celebrated a few days ago.  At her party I noticed she was not wearing any jewelry whatsoever.  At the time it distressed me, as I had always been accustomed to seeing her wearing some jewelry that complemented her attire.  The piece I remember she always wore was a small, elegant diamond pendant given to her years ago by her husband.

This relative began residing in a retirement community assisted living about a year ago.  She is very much with it as far as her thinking and caring for herself, and she only uses a rolling walker for added support following hip surgery a few months back.

I then learned from family that when she visited her home briefly, going to the drawer where she had kept her jewelry, it was empty.  Evidently, her close family were concerned that expensive pieces might disappear in the retirement facility, and they had removed all for safe keeping.

All this causes me to remember how much dressing every morning with makeup applied by her aide meant for my mother.  She did not have fine jewelry, but we made sure she had jewelry she could enjoy safely at the nursing home where she resided.  How much her aide’s care must have meant, beginning each day clean and freshly dressed, and how much better she must have felt about herself in those days of being dependent on others.

So for my relative, I believe having some jewelry to wear would mean much for her now, in keeping with how she always dressed.  I am hoping her family will rethink their good intentions and replace some pieces for my aunt to enjoy.

I am also thinking about the members of the Memory Care chorus with whom I enjoy volunteering.  Whenever I meet them for a rehearsal, I find each of them clean and neatly dressed and often for the women, wearing a piece of jewelry.  For our concerts the facility makes to happen that each of the ladies has her hair set by the hairdresser.

So no matter what age or stage in life we are, facing the day clean and neatly dressed with a piece of jewelry here and there can help the spirit!

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I want you to know about a unique opportunity to learn about the latest developments in the fight against Alzheimer’s.  This two-day convocation, Alzheimer’s Solutions Conference, sponsored by InvestAcure, will bring together scientists, physicians, patient families and funders in a collaborative effort to explore and advance innovations in the battle against Alzheimer’s.  The location is University of the Sciences in Philadelphia, PA, June 2-3.

You may have read about the founder of InvestAcure, Max Tokarsky,  in my blog article  published a few months back.  The idea for InvestAcure came as a result of the experience of seeking treatment for his daughter’s cancer.  Hear what Max Tokarsky says about Alzheimer’s:

“We founded InvestAcure because Alzheimer’s must be cured!  Our vision is to see a world where drug companies are owned by millions of spare change investors committed to curing Alzheimer’s.  We believe that by bringing together a vast community of cur-motivated spare change investors, brilliant scientists, and well-managed companies, we can ensure that cutting edg scientific discoveries are turned into a lifesaving cure for Alzheimers!”

To obtain more information about this incredible opportunity, click here to view the conference site and register.  A discount for early registration is open through April 15th.

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Being admitted to the hospital can be a scary and overwhelming situation for both patients and families.  For long-distance caregivers that fear is exacerbated by our inability to physically be on hand to adequately determine whether the care plan truly meets our loved one’s need.

My readers may remember the deep concern I experienced over the past year regarding the standard of care for my aunt, who resided in a nursing home hundreds of miles from me.

Through that experience I learned about a national organization that provides professional health advocates that can oversee care of a loved one and bridge gaps in communication.    That organization is The Alliance of Professional Health Advocates. Information is available at http://www.APHAdvocates.org.

You may be unable to easily connect with a patient advocate.  However, a local member of this organization in Columbus, Ohio offers a three-step approach to hospital safety.  I hope you may find the following suggestions helpful for yourself or a loved one on what you can do to maintain some control and be safe during hospitalization.

Step #1: Be Organized

Just as you would prepare for a presentation, sales call or board meeting, patients and families should prepare for a hospitalization or appointment by getting organized.

This means assembling all of the information you may need to access in one place, such as a folder, notebook, or on a device. The information may include:

  • the patient’s medical records
  • any advanced directives
  • medications and allergies
  • current providers and their contact information
  • the conditions the patient is being treated for

Additionally, take the time to write down the questions you have before meeting with your physician or medical team. This will ensure you won’t forget what you want to ask,  if the conversation gets sidetracked or the appointment is rushed.

Being organized is especially important if your hospitalizations or appointments are taking place in multiple health care systems.

Step #2: Be informed

Make sure you have a clear understanding of your diagnosis and treatment. If you don’t understand something, don’t be afraid to dive deeper to get the answers you are looking for. If possible, ask another medical professional such as a nurse or physician extender (nurse practitioner or physician assistant).

If you decide to research your diagnosis and treatment options on the Internet, visit reputable sites such as the Cleveland Clinic, Mayo Clinic or Web MD. Confirm any information you learn with your doctor to make sure you understand everything correctly.

#3: Be empowered

Don’t let the situation intimidate you or prevent you from understanding your options. It’s your right to be informed, ask questions, and get second opinions. If you don’t feel comfortable doing this yourself, it may be helpful to have someone else at the bedside or appointment with you, such as a spouse, adult child, or family member/friend with a medical background. This is your health and your life, and the providers are there to help you. So speak up if you need clarification or something doesn’t make sense.

And if you don’t have someone in your life that is comfortable taking on that role, a patient advocate can help. Guided Patient Services was formed for this exact situation — to help patients understand, get clarification and choose their best treatment option.

If you are facing a medical appointment or hospital stay and have questions about the role a patient advocate might play, please contact one of these organizations:  Guided Patient Services,  Owner/Advocate Dr. Annette Tioras, MD, email:  annette@gpscolumbus.com, http://www.GPScolumbus.com; or The Alliance of Professional Health Advocates, http://www.APHAdvocates.org.

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You may have thought that participation in a clinical trial for the treatment of Alzheimer’s disease to be available only for those people living in close proximity to a research institution.  However, that no longer holds true.

More than three dozen academic and private clinics across the US are looking to enroll thousands of people with mild to moderate Alzheimer’s Disease (AD) in a clinical trial to study an investigational treatment that may actually protect against, slow down, and potentially improve memory and thinking problems, which increase as AD progresses.

The clinical trial is called T2 Protect AD.  Researchers are currently looking to enroll participants in its Phase 2 Study.

The treatment being studied is called troriluzole, a modified version of a currently FDA-approved treatment for Amyotrophic Lateral Sclerosis (ALS), riluzole.  Researchers know that troriluzole, as compared to riluzole, is better able to reach the brain, potentially improving upon current treatment options.

As my readers know, there hasn’t been a new treatment for Alzheimer’s Disease in 15 years.  Yet the number of people affected continues to be staggering.  Nearly 6 million Americans suffer from Alzheimer’s Disease, and cases are expected to triple by 2050.  And that’s only in the United States.

To learn more about the T2 Protect AD clinical trial, view below:.

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Imagine the time to be 6:00 p.m., a time in the evening that many caregivers often dread as “Sundowners”.  However, that’s not the case for the singers who have come together as we begin our weekly chorus rehearsal, preparing for a public concert coming up in seven weeks.  A number of choir members have taken their places ahead of  time and are thumbing through their songbooks, ready to go, lifting their voices to the familiar songs everyone knows.

We meet for three seasons of the year:  March through end of April, late June through August, and mid October through early December.  We have a song leader who happens to be a volunteer from an area church, and an able accompanist on the piano.  Our theme song as we begin every rehearsal for this fall season is “When the Saints Go Marching In.”  Our song sheets with lyrics only are kept in a looseleaf binder, one for each of us.  We sing in unison.

Sometimes we lose our place, but luckily there are volunteers seated among us who assist with keeping the place and turning the page for each new song.  Great care has been taken to make sure song selections are within a comfortable singing range.  We move along to each new song in keeping with the Christmas theme – “Frosty the Snowman”, then “Up on the Housetop” and so on until we have covered the entire program of 12 songs we will sing for family and friends at our upcoming December concert.  We like catchy tunes!

A few of us just listen sometimes, and others who may not normally be able to speak are sometimes amazingly able to sing the words!    Midway through our hour of rehearsal time we take “five” – that is one of our teen volunteers leads us in five minutes of chair calisthenics (easy and fun).

Once in a while we love singing a round, such as “Row Your Boat”.  The point of our rehearsal time is not really the development of singing skill.  We are more about the pure joy of singing well-loved songs that often evoke happy memories.  All too soon our time draws to a close and we end with our traditional “Happy Trails to You Until We Meet Again”.  We enjoy an easy chat with the volunteer who has sat with us as we move from the rehearsal space down to the snack area for some punch or lemonade.

What has just been described is a chorus rehearsal of people who are dealing with varying stages of dementia, whose caregivers and volunteers are not letting  memory impairment define who we are.  This dementia chorus singing group is made up of residents in Memory Care.  A chorus can also be community based, although organizing may require extra hoops to jump through.

Amazingly, memory loss often seems to bypass areas of the brain where music memory is stored.   So loved ones can actively lift their voices, sharing their joy of singing with caregivers, friends and family.  Through singing oftentimes loved ones realize they have something to share with others! 

Volunteers often see smiles as we engage in a bit of small talk with the singers as they depart from the rehearsal room for a snack.

More info to follow on how to begin a dementia chorus!

 

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Memories of the earlier days of my mother’s illness flood my mind as I gradually approach the age when her initial memory problems began.  I think about how confidently she had conducted her life for so many years after our dad became ill and how she was able through careful management to build and furnish a family home which we all took pride in.   She had completed her bachelors degree, a few courses at a time, and was regarded an excellent elementary school fifth grade teacher for over 25 years, her favorite subjects being math and science.

With her keen intellect she was able to mask her memory difficulties for quite a while.  But eventually as bills piled up and the checkbook became more confusing, she confided in my brother that she needed his help.   And so it went, gradually over time — the loss of that independent spirit and drive to accomplish that had been an integral part of who she was.   At some point her self confidence became compromised as she suffered a broken hip and became unable to care for herself as she had in the past.

Nursing facility caregivers did not see her as a former fifth grade teacher, the wife of a former Methodist minister.  They saw her as a patient.

I had just created the first Memories from My Life photo poster for her,  which included enlarged photos with captions of her early life and the people and places that marked significant life occasions.  When I placed that poster in her room at the care facility, it was amazing how her feelings about herself changed seemingly overnight.

When her caregivers entered her room, there was meaningful conversation with our mother.  She was only too happy to identify the persons in the photos and describe the events behind them.  Those caregivers seemed to regard our mom in a much different light — she was not just the elderly patient in Room 113; she was Christine Wagner who loved life and had a family who loved her!

Over time as her dementia deepened and she lost the ability to speak, that poster remained a reminder to her of who she used to be and the people who loved her — a real comfort at any time of day or night.

Click here to visit MemoriesfromMyLife.com to create a poster for your loved one, reminding them of how they used to look and the people who continue to love them.

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Marlena Books is a Canadian-based company that creates dementia-friendly books to empower persons living with Alzheimer’s and dementia to continue reading. At Marlena Books, they believe individuals with dementia should have access to age-appropriate, dignifying, adaptive recreation and to continue reading beyond dementia.

Marlena Books was inspired by founder Rachel Thompson’s grandmother, who lived with dementia and enjoyed reading throughout her life.  As her dementia progressed, Rachel noticed that her grandmother read less and less, until she no longer continued with one of her favorite hobbies. Her grandmother could read large text, such as newspaper headlines, but struggled with reading books and articles that were available to her.

This was when Rachel realized that it wasn’t that her grandmother could no longer read, but what was given to her did not meet her new needs.  So Rachel went online to purchase some dementia-friendly books for her grandmother and realized there were no available options.

After realizing such a large gap existed, Rachel decided to create dignifying, mature, short-stories for persons living with dementia to read.  Marlena Books incorporate dementia-friendly features, such as page turning prompts, Canadian National Institute for the Blind’s approved font, and a research-based layout.

While Marlena Books have been well-received, many customers have inquired about more accessibility features, such as offering books in different languages and audiobooks.  In the fall of 2018 the Marlena Books App was released, a platform that offers access to all of the Marlena Books, with numerous accessibility features that keep persons living with Alzheimer’s and dementia reading longer.  The Marlena Books App has been designed with and for persons living with dementia and their care networks.

The app offers accessibility features such as automatic page turning, personalization features, and audio reading.  To learn more about Marlena Books and to check out their products and resources, please visit www.marlenabooks.com (and yes! They do ship to the U.S.)

To download the Marlena Books app on the App Store, please visit https://itunes.apple.com/us/app/marlena-books/id1423314247?mt=8&ign-mpt=uo%3D2

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Dear Readers,

A few weeks ago my friend Gail and I, classmates and friends from the Class of ’59, drove together down to Florida with the express purpose of visiting another of our classmates, who happens to be residing in Memory Care.  We had been considering this visit for months.

This friend was not any ordinary friend.  Over many years she had generously entertained us and others from our class at family villas in Paris and in different locations throughout the US.  I remember what a wonderful host she was, going all out to ensure we were comfortable wherever we were and that we enjoyed excursions to the most interesting of places.  With these memories of happy times she had made to happen for us, we wanted to give back in a small way.

We had not been able to speak or communicate with our good friend for over a year since she entered Memory Care.  Each of us had our own fears about what to expect:  Would our friend recognize us; would she be able to talk with us; would she even want to see us– and on and on.  Communication with our friend’s family had been very sparse.  For months we did not even know where she was.

But what propelled us to jump in the car for the drive to Florida was a successful talk with our friend’s daughter, who gave us the name of the Memory Care facility where she was and giving her permission for our visit.  However, we were warned by the daughter that we were only to stay an hour, and that we were not under any circumstances to take her out of the facility.

So on a lovely, bright Sunday morning in early January we pulled up in front of a beautiful facility.  We had thought about what our friend might enjoy.  I remember how my friend Gail had kept beautiful scrapbooks from our school days.  And that’s what Gail packed – four large scrapbooks from schooldays in the ’50s.

I brought her a few gifts, such as a bracelet that was easily opened, and a cotton sweater in the style that I remember she might have enjoyed.

We walked in but decided to omit our arrival time on the sign-in book in case anyone might be keeping tabs.   Uneventfully, we were escorted directly to our friend’s room where a beautiful green Christmas wreath was still hanging on the door.  (Our friend by profession was an interior designer.)

After several knocks, the door opened and we were met with first a bit of puzzlement and then a wide grin and utter joy as we hugged our friend in utter delight.  She always loved cats and had her two cats in her room as company.  So we were careful not to let the kitties get out.

With our friend it was just like old times, each of us talking as if we had not ever been apart.  Gifts were opened with delight, and the bracelet was put on immediately.  The package was opened and enjoyed.

And then next, out came the first scrapbook.  It was as though time had stopped as our friend recognized every person in every photo, remembering details that Gail and I had forgotten.  He recall was amazing.  And that went for each book we browsed through.

Our visit did not last one hour; it lasted over four hours!  As we left to return to our hotel, our thoughts were that maybe our friend was misdiagnosed.  Maybe she had just been depressed.  We decided the test might be whether she remembers our visit when we return tomorrow.

And that’s what we did.  Sadly, as she opened her door to greet us on the second morning, it was as though it were her first time to see us.  She did have on the bracelet I had given her.  But she wore the same clothes as the day before, and her hair could have used a wash.

We took up where we left off the previous day, but this time entered uncharted territory of the most recent stay we had enjoyed in one of her homes two years ago.  Sadly, that memory was absent.

So this begs the question:  Should one visit a relative or friend who may not remember your visit after you leave.  In our minds (my friend Gail and myself) the answer is a resounding YES.  We knew that deep down our friend remembered us and her feelings of recognition and friendship shared had never left.  We were so happy to share the memories still intact and to appreciate the good moments together.

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Dear Readers,

You are invited to hear four world-renowned physicians, researchers, and advocates working on this critical healthcare issue.

Information follows:

WHAT:            Webinar discussing the latest research and advances being made in the fight against Alzheimer’s and Dementia with a special emphasis on prevention.

WHEN:            January 7, 2019, from 10:00 – 10:50 AM (EASTERN)

WHO:              Four world-renowned physicians, researchers, and advocates working on this critical healthcare issue. The webinar is being hosted by Chuck Stetson, the head of the Stetson Family Foundation. The panelists include:

  • Paola Barbarino, CEO of Alzheimer’s Disease International.
  • Professor Miia Kivipelto, lead researcher in the FINGER study, from the Karolinska Institute, University of Eastern Finland, and Imperial College London.
  • Dr. Howard Fillit, Chief Science Officer of the Alzheimer’s Drug Discovery Foundation.
  • Dr. Ken Cooper dementias, Founder of the Cooper Clinic.

HOW: To register for the webinar, please go to www(dot)globalbetterhealth(dot)com

 

DISCUSSION TOPICS:

  • The latest research being conducted by the World Health Organization (WHO).
  • Projected findings from the continuation of the FINGER study – now being conducted in the U.S., Europe, China and Singapore.
  • The Cognitive Vitality Program, Diagnostic Accelerator, and The Cooper Institute’s 8-Point Plan.
  • The lack of discussion in the public domain about Alzheimer’s and Dementia.
  • Recommended actions to start today to significantly reduce the risk of Alzheimer’s.
  • Next steps in the battle.

MEDIA CONTACT:      Joe Duraes, 917-687-6419 (mobile); joeduraes@optonline.net

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Air Force veteran Juan Reyes was diagnosed in the fall of 2015 with ALS, an incurable, progressive, neurodegenerative disease that can cause patients to lose their ability to walk, dress, write, speak, swallow and eat.

An estimated 5,000 to 6,000 Americans are diagnosed each year with ALS.  Veterans are twice as likely to develop ALS as people who haven’t served in the military.  It is estimated that approximately 4,220 veterans in the United States have amyotrophic lateral sclerosis with initial symptoms like muscle weakness, loss of balance, and slurred speech, which can be subtle at first; and it can take up to 12 to 14 months to be accurately diagnosed.  The majority of people with ALS die within two to five years of receiving a diagnosis, but progression of the disease can vary significantly.

For those people dealing with ALS, having a caregiver eventually becomes a necessary part of life.  Juan Reyes is married with four children in San Antonio, Texas, and he spends a great amount of time with his sister Angie, who has become his primary, in-home caregiver since his symptoms began progressing.

Juan and his sister Angie Ramirez graciously agreed to do an interview with me in November.  Although my voice is barely audible, I have uploaded the interview.  At least you will be able to hear Juan speak about his experience.

To view the interview, click here.

 

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