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I want you to know about a publication coming out this month written solely for caregivers of Alzheimer’s and dementia patients, which happens to be the only book in the marketplace that addresses the often difficult to recognize non-memory-related medical conditions encountered by caregivers.  Written by an impressive group of experts at University of North Carolina-Chapel Hill and Duke University, Author/Editor Dr. Philip Sloane seems to understand exactly where we caregivers are when he states the following:

When healthy adults begin to feel sick – maybe it begins with nausea or body aches, or feeling unusually worn out – they notice these changes and do things to feel more comfortable.  They might cancel appointments take medicine, drink more fluids, or call a medical provider for advice.

But for someone whose ability to make decisions is impaired by Alzheimer’s disease or a related dementia, even something as simple as indigestion can be a very different story.  The person may not be able to express discomfort in words and become anxious and irritable, restless, or more confused than usual.  They may not want to eat or drink, or refuse their regular medicine.

Family caregivers face situations like this on a day-to-day basis.  Often they need to act like detectives, looking for changes in the person and then trying to figure out what is happening and what to do.  In addition they must manage chronic illnesses like diabetes or lung disease and communicate with health professionals in offices, emergency departments, hospitals, and nursing homes.

And, while caregiver resources abound on coping with stress, decreasing challenging behaviors, managing daily care routines, maintaining safety, and enriching social and emotional well-being, very few resources exist to guide caregivers when new or worsening medical signs or symptoms pop up, or in determining whether a nonspecific symptom like not eating well, or behavioral symptoms such as agitation represents a serious problem or something that can be managed at home.

That’s where the new book, The Alzheimer’s Medical Advisor:  A Caregiver’s Guide to Common Medical and Behavioral Signs and Symptoms in Persons with Dementia comes in.  Written by experts at University of North Carolina at Chapel Hill and Duke University, it includes comprehensive two-page guides on over 50 common medical, nonspecific, and behavioral issues.

With this book in their home, caregivers will feel more prepared to assist when new or worsening symptoms arise, and better able to communicate and partner with health care providers.  Indeed, researchers tested the book in over 50 caregivers over six months and found it increased their confidence in providing multiple aspects of home medical care.

Pages on medical symptoms such as cough, fever, and diarrhea, for example, give important facts about possible causes, signs that suggest urgent care is needed, complications to watch for, and tips for home management in someone who may not be able to explain how they feel or who might not easily go along with a typical treatment plan.

 This book also covers the more vague and troublesome nonspecific topics, such as increased confusion or eating less than usual, as well as behavioral symptoms such as agitation and restlessness.  Additional sections inform caregivers how to take vital signs and identify and manage dehydration and pain – information all caregivers need to know but often learn the hard way through trial and error and agonizing (and sometimes avoidable) trips to the emergency room.

The book also includes practical information on different parts of the health care system, such as ways to make hospitalization more comfortable, what to look for in a nursing home or home health aide, or what to expect from end-of-life care services. 

Additional chapters cover how to help with medication routines, and, importantly, how the caregiver can stay healthy and safe while providing care.  With checklists and forms to keep medical information organized, the book encourages caregivers to become an active, informed partner in health.

One caregiver who tested the book said:  “I used to get so panicked when things with [my husband’s] heart or blood pressure happened.  This book really calmed me down; I feel a lot less stressed…it covers everything I can think of.”

I heartily agree with Dr. Sloane when he says, Any reference that can empower caregivers to feel more confident in their many roles and bring them peace of mind is worth having on the shelf!

The Alzheimer’s Medical Advisor (Sunrise River Press, 2017) is available from major retailers like Barnes & Noble and Amazon, and from the Sunrise River Press website:  http://www.sunriseriverpress.com.

 

Evan Bass Zeisel is a writer, actor, and producer who has spent five years working on a clinical trial studying the effects of theater on Alzheimer’s disease.  Not just devoting his energies to the clinical trial, he has also spent much more time than that with the Alzheimer’s community.  The result of his extensive study and experience is a 22-minute film, “How You Are To Me”, focusing on the relationship between an individual living with Alzheimer’s and the loved one who is caring for him.

Intertwined are lessons in good communication techniques honed through his work with the study and how we must adjust the way we interact to match with what individuals with Alzheimer’s can process.

The goal of this talented producer is to help caregivers realize that they are not alone, to be honest with the disease,  and to recognize that beautiful moments still exist,  regardless of the stage an individual is with the disease.

I had the privilege of previewing this powerful film, and I want you to know how it came across for me.

First off, viewing the film took me back to those times when something would abruptly set my mother off and I had to grapple with an alternative focus and quickly divert her attention.   I for sure do not remember being able to ‘keep it together’ as well as the women actors did in the film.  As I watched, I actually felt my body tensing as it used to at my mom’s unexpected behavior.  (Actually, I was transported mentally back to the nights before our long drives to Virginia when my mom would be fully dressed, standing in the hallway outside the bedroom, waiting and ready to climb in the car at 2:00 a.m.)

I learned much from watching how the women in the film were able to interact to match with what their mates could process.  I marveled at how the younger wife gently listened with full attention as her husband  told her the same story for the umpteenth time of how they met.

The film utilized Memory Books and Memory Boxes similar to the Memories from My Life posters.  Evan stated to me, “The impact of having a visual link to the things from an individual’s past, especially ones that have great emotional meaning, is an amazing tool.”

How effective was the juxtaposition of actors playing the couple in their youth and elders playing the couple as they aged. There were many moments of loving tenderness still very much a part of the younger and older couples’ lives together.

So much that we care givers can identify with is included in this short film.  To view the trailer of “How You Are To Me” go to:   YouTube https://youtu.be/XSX1nTqsRkw.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

individuals with Alzh

 

 

 

 

At the nursing home where I volunteer, most patients have pictures of family in their rooms, but very few can view their photos easily.  Usually, the pictures are on a table across the room and very few photo images are large enough to be enjoyed.

I discovered how much family pictures meant for my mom when her memory began to fade.  For her, being able to see herself as she used to look and being able to view photos of loved ones was a real lifeline at a time when so many life changes were occurring.

With limited family visits because of travel distance, she was rather cut off from the people who cared for her.  That’s when the idea for a poster with enlarged images and photo captions hit home.

For the month of May I am offering my readers a discount of 25% on every poster order received by May 31st, 2017.  At checkout, simply enter the following coupon code:  MAY25 to receive 25% off on any poster order.

You may access the Memories from My Life poster site with either of the following:  http://www.MemoriesfromMyLife.com or http://www.PostersAsTherapy..com.  Then follow the easy prompts step by step.

If you prefer to have printed instructions, click on the menu item HELP on the MemoriesfromMyLife.com poster site to print off easy-to-follow instructions.

I welcome hearing from you on your experience of building the poster and feedback from your loved one.

Four poster sizes:

 

Pure maple syrup for most of us is enjoyed as a rare treat on special occasions.  Nothing satisfies my ‘sweet tooth’ more than warm maple syrup over pancakes and even ice cream as a dessert!  (And usually I am admonishing myself to its enjoyment in moderation.)

However,  we may be changing our attitude toward this tasty treat as we learn more about its healing properties.

At a first ever global symposium on “Chemistry and Biological Effects of Maple-Derived Food Products,” presented at the 253rd annual conference of the American Chemical Society, scientists from around the world shared results of their research on maple’s potential impact on several areas of the body affected by chronic inflammation.

Chronic inflammation has shown a potential link to brain conditions such as Alzheimer’s disease.

As caregivers seeking to learn all we can about brain health, such research news demands attention.  A portion of the news release follows:

Can Pure Maple Syrup Help Reduce Chronic Inflammation?

This global symposium convening on April 2, 2017 was organized by Dr. Navindra Seeram, who currently serves as chairman of the Division of Agricultural and Food Chemistry of the American Chemical Society. Dr. Seeram has extensive experience examining the impact of phytonutrients in foods such as berries and pomegranates. In collaboration with the Federation of Quebec Maple Syrup Producers, Dr. Seeram has been studying the unique properties of maple in his laboratory at the University of Rhode Island since 2009. The results of his research stimulated the interest of the global scientific community, which has uncovered additional health benefits of pure maple products.

A new University of Rhode Island study, highlighted at the symposium, revealed the presence of inulin, a type of carbohydrate recently discovered for the first time in maple syrup. Inulin is a complex carbohydrate (natural dietary fiber) that acts as a prebiotic and works to encourage the growth of “good” or beneficial bacteria in the gut. Inulin joins the other beneficial polyphenols, vitamins and minerals already identified in pure maple syrup. This latest discovery could allow maple to be classified as a functional food.

In addition, a new study conducted on animals, also revealed at the symposium, focused on the beneficial effect of a symbiotic (prebiotic and probiotic) maple sap drink in recovering gut flora balance, which can be lost for several reasons, including treatment with antibiotics.

“A healthy gut, with a balance of beneficial bacteria, helps to stimulate and support a healthy immune system. A healthy immune system, then, can help protect the body against chronic inflammation,” said Dr. Seeram. “Chronic inflammation has been shown to have a potential link to brain conditions such as Alzheimer’s disease. As such, this research provides additional information linking pure maple syrup, a unique natural sweetener, to brain health. However, additional animal studies, along with eventual human studies, would be required to confirm these initial findings.”

This year, two newly discovered additional compounds with antioxidant properties and potential health benefits have been identified in the lignan family, bringing the total count of known phytonutrients in maple products to 65. This may help support discoveries made over the past few years on the inherent properties of maple syrup from Canada that comes directly from the sap of the maple tree, making it an all-natural product with unique health benefits. Discovered in 2011, a unique, polyphenolic molecule in maple syrup, Quebecol1, and one of its analogues (isoquebecol, recently synthesized), have demonstrated that it significantly decreases the production of inflammation mediators.

“The 7,500 Quebec-based maple producers are committed to pursuing funding of new research to help further identify the positive health impacts of pure maple,” said Serge Beaulieu, President of the Federation of Quebec Maple Syrup Producers. “This is why we have chosen to work with Dr. Seeram along with other researchers. Dr. Seeram’s tremendous experience studying the impact of phytonutrients in plants and fruits has propelled maple research since he began studying the natural sweetener in 2009. There is still much to discover about maple’s health benefits, and the scientific community has only uncovered the tip of the iceberg. We will continue to allocate resources to research on maple products to discover its impacts on the human body.”

Inflammation is a normal part of a healthy immune response, and is a biological process that helps heal injury and fight infection. When inflammation becomes uncontrolled or chronic, it plays a role in exacerbating a variety of health-related issues. There are several ways to help prevent and combat chronic inflammation. A diet rich in foods that contain polyphenols, such as green tea, red wine, fruits and vegetables – and potentially pure maple syrup from Canada – may be beneficial for supporting a healthy immune system.

The Federation of Quebec Maple Syrup Producers does not promote an increase of sugar consumption. When choosing a sweetener for moderate use, it appears that 100% pure maple syrup from Canada has more healthful compounds compared to some other sources of sugar.

About the Federation of Quebec Maple Syrup Producers and Maple Products from Quebec

The Federation of Quebec Maple Syrup Producers (FPAQ) was founded in 1966. Its mission is to defend and promote the economic, social and moral interests of some 7,500 Quebec maple businesses, as well as to develop initiatives that collectively market the products that flow from Quebec’s 44 million taps. The quality work of these maple producers has made Quebec the source, on average, of 72 percent of the world’s maple syrup production and 90 percent of Canada’s maple syrup output. Together, Ontario, New Brunswick and Nova Scotia contribute the other 10 percent of Canadian production.

FPAQ proudly promotes the reference brand Maple Products from Quebec in addition to coordinating the international promotion and value creation of Canadian maple products on behalf of Canada’s maple industry. In this capacity, the FPAQ leads and directs the research efforts of the Réseau international d’innovation des produits d’érable du Canada.

1 Li, L., & Seeram, N. P. (2011). Quebecol, a novel phenolic compound isolated from Canadian maple syrup. Journal of Functional Foods, 3(2), 125-128.

SOURCE Federation of Quebec Maple Syrup Producers

Thanks to Blake Mirzayan for such timely information.

Short Sighted

As you may know, every two or three months I visit my dad’s sister, Aunt Eunice, who lives in a nursing home in rural Virginia.  I took my mother’s place as her guardian and power of attorney.

Aunt Eunice will soon be celebrating her 90th birthday.  Due to a developmental problem with walking and osteoporosis she is confined to a wheelchair.  And now with increasing macular degeneration she is very visually challenged.

She is in my opinion very blessed to have a roommate much younger than herself who has lots of energy and loves to keep their room sparkling clean.  It is nothing for her roommate Juanita to spend time cleaning even the bedsprings!

However, as I discovered this weekend, I have fallen far short in keeping tabs on the snacks that are sent to my aunt via mail from other nieces and from my physical visits four times or so a year.  I have depended on my aunt and her roommate to tell me what she likes in the way of snacks and toiletries she needs.

After our excursion yesterday, riding in the car to the shopping center and my gathering the usual snacks and toiletries that have become a habit to purchase, we returned to the nursing home and her room.  I decided this time to assist with putting away the stuff we had purchased.   In the process, having run out of space, I discovered in her closet boxes filled to the brim with unopened crackers, cookies, cereal, numerous toothbrushes and 5 unopened tubes of toothpaste!  I loaded my car with an equivalent amount compared with what I had purchased that day at the store.  I guess I won’t be buying chips, cereal, toothpaste or toothbrushes for a while!

My aunt claimed that her roommate hid her stuff in the closet.  For Aunt Eunice that’s the way it was for her.  In reality her roommate, in trying to maintain some measure of order and neatness in their room, had placed things in the closet.  Then both forgot what was there.

Aides and nurses would not be permitted or have time to sort or discard personal property belonging to a resident.  Due to my aunt’s vision challenges her toothbrush holder was indescribable and truly unsafe for use.  I threw that out immediately along with foodstuffs that were out of date and probably unsafe to consume.  A small refrigerator posed no problems.

Lesson learned.  In the future I will make time to check what’s there before we go out to shop.  With living on a retirement income, I can surely benefit from making more careful choices when we go to the store.

People like my aunt who have vision challenges need an extra set of eyes to keep up with food and even clothes that need replaced or repaired.  This goes also for loved ones dealing with a fading memory.

As caregivers of loved ones dealing with dementia, we as a brother/sisterhood have our own dementia-related health concerns.

I regard myself as reasonably healthy for my age, although I do take an acid suppressing drug for acid reflux, which I developed several years ago.

Co-incidentally, I have very recently discovered an online resource, a self-help navigation resource, for people with little or no resources available to find personalized recommendations for medical conditions.  XpertDox.com was founded by a team of doctors, IT specialists, and business professionals based in Birmingham, Alabama, Scottsdale, Arizona, and San Jose, California for patients with serious medical concerns to empower them with information specific  to their condition, guiding them to seek the best possible care for their condition, and finally providing support by helping them connect with peers suffering from a similar condition.  Use of this service is free of charge.

Although at the time I did not regard myself as having a serious medical condition, I decided to check out the site, http://www.XpertDox.com, to gain advice about my acid reflux condition.  After visiting their homepage, my first stop on the XpertDox website was to check out their blogs.  Scrolling down, this heading stopped me dead in my tracks:  “Drugs for Acid Reflux and Heartburn Can Cause Dementia– Dr. Garima Agarwol, M.D.

The essence of this article for me was that the use of acid suppressant drugs (proton pump inhibitors known as PPIs) inhibit the body’s absorption of Vitamin B-12.  Vitamin B-12 actually aids in keeping at bay the buildup of beta-amyloid plaques that are known to be present in the brains of persons with dementia.

Increasing my concern is the knowledge that I have pernicious anemia, which my mother had.  Pernicious anemia is caused by my body not absorbing Vitamin B-12 naturally.  I found that indeed I do have a potentially serious problem.

With all this in mind, I set about using the XpertDox site for my own medical need.  The first step was establishing a login with my email and a secure password.

I then keyed in my condition, Acid Reflux.  The next screen gave me a choice of an Xpert Doctor, Xpert Hospital, or Support.  I clicked Xpert Doctor.

I then learned that XpertDox through a unique system of algorithms or steps in processing has pulled together over 7,000-plus diseases/conditions and evaluated over a million doctors and 4,500 hospitals to provide unbiased, objective, well-rounded and personalized recommendations for patients without the influence of industry or hospital/physician groups.  Results are personalized for each disease or condition.

The XpertDox search in no way depends on patient reviews.  In fact I learned that patients who see doctors with high satisfaction ratings may have a higher chance of dying!

My search for Xpert Doctors produced a list of doctors for my condition, beginning with 100% for an expert match and a list of successive profiles in decreasing order.  My search came up with a doctor in New York City as a 100% match for my condition acid reflux.

I then noticed I could further refine my search by checking a box for my particular state/zip code.  For my state of Ohio I found two doctors with a 75% match in my home city of Columbus.  I could have come up with a higher percentage match with doctors in Dayton and Cleveland.

A bonus to each doctor profile is a listing of their research papers related to a specific disease or condition.  By clicking on the paper title, a summary or abstract of the paper pops up.  (Of course, the content is specific for medical professionals and a bit difficult for a lay person like me to comprehend.  But at the same time, the research paper summary is readily accessible.)

Another offering of this site is the provision for family support peer to peer with tips and advice.

With the information obtained from XpertDox.com, I feel empowered with contact information for experts in my city Columbus, Ohio to obtain their recommendations about my acid reflux condition in view of my family history of dementia.

You may have your own questions or concerns related to dementia.  To access a section of the XpertDox.com site devoted specifically to dementia, click here.

Again, use of this site is free of charge.  Go to:  http://www.XpertDox.com.

Our trip to select a Christmas tree had become a tradition, as we made our way to the same lot year after year.  My husband John would start reminding me about the tree soon after Thanksgiving!

Now I had standards about the tree to be picked – it must be tall enough not to need placement on a table top and it must be fresh.  I remember the Christmas before my brother was born in January 1947 and my disappointment in our family’s little table-top tree.  Little did I realize my parents were doing well to have a tree at all that year.  Of course, in my four-year-old mind’s eye I wanted the tallest one possible.

My mother would let me assist with the icicles.  They were not to be thrown on but carefully placed one by one so most of the icicle fell straight and free.

My mom rarely missed a year putting up a live tree, even into her ’80s.  Fast forward to this day in 2016, I knew the tree selection was going to be different, as I would be doing it alone.  And this year I would also be selecting a wreath for my husband’s grave site.

I made it to the checkout without breaking down.  But when the cashier willingly assisted me with carrying my purchase to the car, I took her up on it.  Driving around to the back for pickup, I had my live tree placed in the car trunk.

Remembering the joy and contentment of years past as my husband and I would leave the lot together, I silently sobbed on the drive home.  So much was different.  Since March the year has been filled with many firsts.

I remember the first time I voted after his passing, my meltdown right there in the middle of everything, and the kind worker who left her post to give me a hug.

Fortunately for me today I had a place to be in the afternoon, my part time job at a local business.  Upon getting into my car to drive home that evening, I didn’t feel like facing an empty house, so I made a detour to a local cafe.

Given a choice of seating I requested a booth in the back, ordering coffee and my favorite dish – fresh fruit with chicken salad on the side along with a warm blueberry muffin.  As I sat down I noticed a couple sitting to my left, who appeared to be a bit younger than my husband and me.  I guess I must have mused about their happiness.

The time arrived for me to request a check.  But as she came over, my waiter was muttering something that sounded a bit strange, like “Your bill has been taken care of…”

The waiter then explained that the couple who had been sitting to my left had paid my bill.  What an amazing thing – my meal had been paid for by strangers.  And I had done nothing to deserve it!

This kind and caring act as I processed it in my head, told me that I had been the recipient of what a real Christmas is about.  As I drove home I felt a peacefulness hard to describe, realizing what that couple had done.

I then began remembering a few of the many kindnesses that I have received from caring friends and neighbors over past months.  And I began to realize perhaps there are opportunities waiting for me to make a difference, just as it had been done for me.  Rather than my earlier focus on what I have lost, I know I now have a choice.