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After so many years – 14 to be exact – of being a caregiver and now an advocate for friends living in custodial care, I gained a tip from a nurse recently that I want to share with you —

When visiting with a loved one who may be dealing with memory issues, sit on their right side to better relate to them.  This tip has been much appreciated as we volunteers sit with our singing partners in the Silver Songbirds Chorus each Monday evening.  To witness the easier flow of conversation has been amazing!

If you haven’t been with your loved one for a while, you may be a bit uneasy about what to talk about.  Actually, your loved one may just love having you step back in time a bit with them as you imagine summer days and what they might have enjoyed.

You might ask if they ever went swimming in the summers and where did they like to swim.  As for me, I grew up in a very small hamlet in the South where the nearest spot to cool off was a creek.  And once each summer my family met for a picnic at a state park that had a lake swimming area.  Perhaps your loved one may have grown up in the city near a YMCA with a pool.

If your loved one is unable to speak, find a photo in their room or bring one from your home showing him or her as a child.  And just imagine where they were and what they were doing as you enjoy the photo together.  As you verbally describe the photo, your loved one may respond with a nod, a shake of the head or a big smile!

Your loved one may better identify with photos of themselves from childhood.  Suggestion:  pull together some photos from your loved one’s childhood to bring with you on that next visit.  Those pictures can also be of your loved one’s parents and/or family members.  You might even get entertained with an interesting story you had never heard before!

 

 

 

 

 

 

 

 

 

 

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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:T2Protect.

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With A Song In Our Hearts

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 possess a gift to share with others! 

The mood is positive and there are smiles and a bit of small talk  as everyone departs from the rehearsal place to the snack area.

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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