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When my mother’s dementia had deepened to the point where her caregivers were concerned that she might be having trouble swallowing, the dietary staff suggested to me that my mom needed to have her food pureed.  How I resisted that idea!  I would visit the dining room and purchase foods I thought would be easier for my mom to chew and swallow.  But things did not improve.

I well remember the day when the order went through – CHRISTINE’S FOOD IS TO BE PUREED – it happened to be strawberry shortcake that was the first to be served pureed.  I felt like crying, thinking my mother would probably stop wanting to eat.  So much of her likes and dislikes foodwise were determined by appearances.  In fact she gradually did lose her desire for solid food.

Fast forward 10 years and I am visiting with the daughter of an elder who resides in Memory Care in Northeast Ohio.  This daughter passed along to me how she has encouraged her mom to continue to eat and enjoy her pureed food — She makes the puree into a filler for sandwiches!

This daughter tries to be with her mom for at least one of her daily meals.  The sandwiches are being enjoyed by her mom; and the daughter is encouraged, knowing that her mother is getting some nourishing food — not just peanut butter and jelly sandwiches.

 

 

A Grandfather’s Legacy

I recently came across a story about two brothers, Alex and Koby Leff, whose grandfather Mel suffers from Alzheimer’s.  This is a bit of the story told by Alex:

On a crisp spring morning in 1945, two teenagers set off on their rickety bicycles for Philadelphia. For George and Mel, Depression kids born to Jewish immigrants in a Brooklyn ghetto, this bike ride was their escape, a claiming of personal freedom. It was an adventure they would remember for the rest of their lives—until Mel lost his memory to Alzheimer’s.

I grew up hearing this story every chance Grandpa Mel got to tell it. How these youngsters navigated through the farmlands of New Jersey, fixed flat tires, and posed for a picture by the Liberty Bell just a couple days later. And now, to him, it was if it never happened.

So, over seventy years after their bike ride, my brother and I set off on the same 100-mile journey to explore the legacy of our grandfather. It’s the subject of my new film: Now and Again. Mel may have lost his memory—but we are determined to find it. We search forgotten places, interview family, and explore decades of family tapes and film reels to piece together the life of a man who can no longer remember it.”

Now and Again is an upcoming feature documentary weaving together a bicycle quest with one family’s multigenerational history and their struggles with Mel’s Alzheimers, becoming a reflection on time, memory, and family relationships. Now in post-production, Now and Again is almost ready for the world.  Check out Now and Again’s trailer by clicking here.

How can you help?

* You may support the funding campaign for this documentary by clicking here.
* Follow the campaign.  Reaching different milestones (250, 500, etc) releases extra benefits and support for sharing the film.
* Spread the word – share, share, share on social media.

Here is a direct link to the crowdfunding campaign: https://www.seedandspark.com/fund/nowandagain#story

Who Are You?

I have a friend who has been a caregiver to his colleague and good friend for several years.  She has dementia with Alzheimer’s symptoms.

Yesterday while having lunch with my friend, I was inquiring about his friend’s family.  She has two elderly sisters who live in another part of the state, but visit their sister whenever they can.

I was told his friend does not recognize her sisters anymore.  Then the thought hit me that his friend might recognize her sisters with a frame of reference, such as a few photos of them perhaps playing together during childhood years.

The significance of photos, I discovered while assisting elders in a Memory Care unit as we were reminiscing with photos.  I found that elders experiencing memory issues much prefer to see themselves as they used to look when young.

This was my suggestion to the friend at lunch:  send me four or five photos with a simple description of each picture, and I will visit http://www.MemoriesfromMyLife.com to build a photo poster using the photos from her childhood that include each of the sisters.

My hope is that through the connection with the poster photo, perhaps the visitng sisters on their next visit may more easily connect with their sister and have some good back-and-forth conversation about their growing up years.

Surely hope my friend takes me up on the idea!

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!

 

 

 

 

 

 

 

 

 

 

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!

 

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.

 

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.