This Associated Press (AP) headline on the computer caused me to raise my eyebrows in surprise:

“News of High Alzheimer’s Risk Doesn’t Devastate”

Could this really be true?

The article summed up the results of a study funded by the National Institutes of Health and published in The New England Journal of Medicine on July 16, 2009:

People who learn through genetic testing that they have a higher than average risk for Alzheimer’s disease are able to handle the bad news pretty well, results from the first major study of this suggest . . . . But they challenge assumptions that people will be devastated by a positive test result and misread it as certain proof they’re doomed to Alzheimer’s. . . .

The study measured anxiety, depression and stress levels in 162 healthy adults who were children or siblings of people with Alzheimer’s.  The participants were in the early 50’s, on average. Most wanted to know if they had the gene, and people who already had severe anxiety or depression were not included.

Yes, this was published originally in a scientific journal.  And, it is telling people only that they have a higher than average risk (not 100% certainty) they will get the disease, but I find it hard to believe the participants handled the news that well.

A Response at the Other End of the Spectrum

In Behind the Mask, Helene Moore writes about receiving the news alongside her husband, Howard, that he has “probable Alzheimer’s disease” at age 63.

We are no longer smiling. I feel as though a mule has kicked me in my stomach. Emotions race through me like sand through a sieve. Anguish. Pain. Anger. Terror. Oh my god, Alzheimer’s. Not that! Not Howard!. . .

I swallow my tears as my heart pounds in my chest. I reminded myself to stay clam, strong, and centered. What was my poor lover feeling? Please God, help us.  I feel like Alice in Wonderland, hurtling down a dark spiraling tunnel into a deep void. Could I wake up from this nightmare?

We made our way outside the doctor’s office where we stumbled wordlessly into each other’s arms, both of us trying to shield the other from the force of this cruel blow.

We cried from the depths of our souls.  We cried for a future that was a death sentence for both of us. . . .

I no longer noticed the sunshine nor felt its warmth.  I couldn’t smell the flowers, although I knew they were there.  How could the world be so unchanged while our lives were thrown into intense turbulence?

Moore’s book is the secret journal she kept when she became a caregiver overnight for Howard, and how she handled the unusual caregiving journey they went on together.  It is a fascinating story of love, courage and hope which all caregiver families can learn many lessons from. More information about it is available on Moore’s web site.

My Response to My Mom’s Diagnosis

I was getting ready to play in my first ever doubles tennis tournament one evening, when the phone rang.  It was my Dad giving me the news that their family doctor told him that day that my Mom had Alzheimer’s disease.  (I had observed her memory problems during our cross-country visits, but not knowing anything about dementia or Alzheimer’s, I chalked them up to normal aging.)  What a bombshell for us!  I don’t even remember most of what I said during the rest of the conversation, other than I was as supportive as I could be 3,000 miles away and told him we would get through it together.  I then went out to play in the tennis tournament, but my body just wouldn’t do what my mind was telling it to do in order to play decently.  To this day, I’m sure my doubles partner wonders what the heck was wrong with me that night! Now you know, Diane.

If you or a loved one has received an Alzheimer’s diagnosis where did you fall on this continuum of reactions?

If you’re a child or spouse of an Alzheimer’s patient, would you have genetic testing done to learn how high a risk you are for contracting the disease?

Let’s discuss in the Comments below. . .

“How can I possibly find time to write in a journal?” I said, thinking of my already never-ending “To Do” list.

In this brief and encouraging book, “You Want Me to Do What? Journaling for Caregivers,” author B. Lynn Goodwin shows caregivers how we can make the time — starting with just a few minutes once a day as a “goal, not a mandate.” And why it is worthwhile to keep a journal for our own mental health and stress relief.

How Do We Begin Keeping A Journal?

Goodwin includes ten short writing tips to refer to. I’ve already used them and a few I’ve found very helpful are:

1. Start where you are. Start with the mood you are in. Start with what you see and hear. Start with what needs to spill out.

2. Feelings ebb and flow like the tides. Write what is true for you in the moment. When your truths change, write different things using the same sentence start.

3. Write about specific thoughts, worries, and dreams. Write about the day you will be free from this phase of your life.

What is a Sentence Start?

The book includes many interesting beginnings for sentences to complete to get started writing. For example, in the chapter entitled “Thoughts About Me,” some sentence starts are:

• Sometimes I wonder . . .

• I don’t like to brag, but . . .

• If I let myself cry . . .

The chapter called “Thoughts About Caregiving” include these:

• When I came into your room this morning . . .

• If I could change one thing in our routine . . .

• When do I get to . . .

And here are a few of my favorites from the other chapters:

• I love you, and . . .

• I wish I understood . . .

• It will be fun to . . .

• Parents and children should . . .

• I want other caregivers to know . . .

Why Is the Time Spent Journaling Worthwhile?

In Goodwin’s words:

This journal is your personal record of your emotional truth. It is a place to heal and grow. Don’t judge away your negative thoughts. They are only thoughts — not actions . . . . Get your story, your nuances, your frustrations, your hopes and your love on the page. Your story is buried treasure.

Caregivers need to make time for self-care, and keeping a journal is one excellent way to accomplish this. I find writing about my caregiving experience helps me clarify the questions rattling around in my head, as well as get my deepest fears and worries out onto paper. And sometimes answers or a new perspective about these questions come to me, often long after the writing session is over.

I don’t plan on sharing my off line journal with anyone, so it is a safe place for me to vent about both the good and the crappy parts of caregiving. In doing so I am creating a record of my unique caregiving journey. And by looking back at things I’ve written days or weeks ago, it has already provided me with a sense of how issues and my feelings about them ebb and flow.

The time I’ve written in my caregiving journal so far has been brief, but it has been very therapeutic. I know I’ll continue to chronicle this stage of my life.

Why don’t you give it a try? Let me know how it goes for you.

Do you keep a journal now? Is it about caregiving or something else? What do you get from the journaling experience?

Please share your comments below.

More information about B. Lynn Goodwin’s book and journaling for caregivers can be found on her website WriterAdvice.com.

I was afraid to read this book. Afraid it would hit too close to home.

And I was right . . . it did.

But I loved it so much, I read it cover-to-cover twice over!

What Is a Designated Daughter?

Here is the definition in the author’s words:

“When my mother became a widow, I became a Designated Daughter — the sibling who would try to take up the empty space that had always been filled by Dad. What I found in walking beside her was my own strong space. . . .

Designated Daughters are all over the country, all over the world. We are a secret society of women, instantly recognizable to one another. We sit in doctors’ waiting rooms holding our mothers’ hands. We hold the coats, we hold the purses, we hold our mothers’ arms like suitors. We become so close, so bonded, we form a two-person silhouette.”

This book recounts D. G. Fulford’s eight years as Designated Daughter for her mother, Phyllis Greene. Fulford writes honestly about the joy and sadness that result from living this role. Her words filled me with laughter, and yes, a few tears, as she recounts their time and travels together.

Phyllis Greene adds her unique perspective on their experiences at the end of each chapter. And this brings another important voice to the story, and the book is richer as a result.

A Part that Made Me Laugh

After a doctor referred to her mother’s breasts as “boobies,” Fulford writes:

“Boobies? Boobies? My mother did not have boobies, my mother had a bosom. A bosom is what ladies such as she have. (I have tits.) I called her on it in the car and she ‘fessed up. The booby bit had bothered her. We don’t even have to talk to communicate anymore.”

A Part that Is Just So Real

This one passage really hit me in the gut. I couldn’t have described being a Designated Daughter any better than this:

“It seems as if it happens in an instant, but it takes a lifetime. Our mothers go from aging to old. We Designated Daughters become familiar with crisis mode, as our mothers’ well-being differs from day to day. They put their trust in us though we do not always trust ourselves. The road ahead is not going to be easy, each step a different test.”

Greene writes humorously, yet with great insight, about her difficulty in accepting the aging process:

“Who ever would have thought a wheelchair would be a joyride?

Years ago, when we were on our way to Florida, I had caught a glimpse of a couple we knew crossing a concourse ahead of us. The wife was pushing her husband in a wheelchair, and I said to Bob, in my stupidity, ‘The day I need a wheelchair at the airport is the day I stop traveling.’ How cocksure I was, and how fast I changed. By 2002 air travel was a disaster, and I wasn’t so great myself in the walking category . . . . Never say never. I ordered a wheelchair as I made my reservations. It’s the only way to go!”

Who Is This Book For?

Even though the title says Designated Daughters, this book is for Designated Sons, too. While it is a fact more daughters than sons are family caregivers, sons will see themselves in many of the same situations Fulford faced with her mom and should also read this book.

In fact, all baby boomers should read this book! Because even if your Golden Oldies are healthy now and aging gracefully, as stated in Fulford’s quote above, it could take only an instant and you may find yourself as a Designated Son or Daughter before you know it.

Plus, it will deepen your appreciation for all the great (and even not-so-great) times you’re currently having with your aging parents. Even before you reach the Bonus Years.

What I Wish For

Reading this book made me feel like I had met these women. Even though the book was just published in 2008, I already want an update on how Phyllis Greene is doing health-wise and otherwise, and how D.G. Fulford is coping (and what color her hair is now). I hope there is a sequel planned by this special mother-daughter team.

Buy It Now

Click on this link to purchase the book (I will earn a few cents commission from Amazon.com):

Designated Daughter: The Bonus Years with Mom

I was planning to write a post about family caregivers, our aging parents and/or relatives, and the many issues we might face during the hectic holiday season. In organizing my own thoughts and researching this topic, I found there are many excellent resources already available on the internet about this very subject. Instead of reinventing the wheel, I’ll point you to the ones I believe are most helpful.

So grab a cup of hot chocolate (or a hot toddy), sit back and browse through this gathering of sites:

• At MindingOurEldersBlogs.com, Carol Bradley Bursack writes about adult children visiting their aging parents and the “miracle transformation” that could occur in “Home for the Holidays: Be Prepared.”

• At AgingCare.com, Carol Bradley Bursack tackles family caregivers’ guilt about not fulfilling all family members’ expectations for the holidays. In “How Caregivers Can Stay Positive During the Holidays: Drop the Fantasy, Lose the Guilt” she stresses the point that caregivers need to accept where we are in life, and that it is absolutely OK to simplify things as a result.

• Paula Spencer of Caring.com gives advice about interacting with Golden Oldies who have dementia or Alzheimer’s disease (she covers all stages), and the apprehension many of us feel about the upcoming holiday reunions in “Holi-Daze Made Happier: How to Hang Out With Someone Who Has Dementia.“

• Valarie D’Acquisto’s Pleasant Days for Elders blog has an article entitled “Wishing You and Your Elder a Pleasant Christmas Season” that reminds us our Golden Oldies run colder than most people and gives practical advice on how to insure they are warm and toasty during these winter months. She also includes a list of possible gift ideas for seniors at the holidays that can be referred to all year long.

• Caregiving.com founder, Denise Brown, offers an entire Holiday Survival Guide, which includes eight individual holiday articles on a wide-range of topics as well as an audio recording.

If you prefer to listen rather than read, you can load these five podcasts onto your iPod or mp3 player and listen while you’re on the go — recordings from the weekly “Ask Mr. Eldercare Show” at BlogTalkRadio.com. Martin Sabel, aka Mr. Eldercare, is the host who covers these holiday topics with his guests:

Home For The Holidays: Getting Ready To Visit Mom and Dad

What To Look For When Visiting Your Aging Parents Over The Holidays

Ask Mr. Eldercare About Aging Parents and The Holidays

Manage Holiday Caregiving Stress Before It Manages You

Before You Return Home for the Holidays, Do This

It is my hope that after reading or listening to these words of wisdom, you, your families and your aging loved ones will have a much less stressful and a far happier holiday season!

I like learning from you, too. What have you learned from your caregiving experience during the holidays?

Or please share other articles or resources about this topic in the comment section below. Thanks!

Before watching this documentary I thought it was going to be an investigative report focused on elder abuse, and I was surprised to find out it is much more comprehensive than that!

In fact, I wish a major TV network or PBS would air this eye-opening documentary during prime time because it is filled with important information about eldercare in America.

What Does It Cover?

By the year 2010, there will be 40.2 million Americans over the age of 65. And by the year 2030, there will be 71.4 million Americans over 65. Nearly double the amount of senior citizens will be added to the U.S. population in only 20 years!

This documentary explains how financial abuse is committed against our senior citizens: by predatory caregivers, crooked conservators, telemarketing hoaxes and a variety of other scams by ex-cons and con artists. Our Golden Oldies can be robbed of their entire life savings, homes and even their lives if they become the victims of such schemes.

The producers provide many excellent tips on how to prevent financial elder abuse, and include topics such as alternative long-term living arrangements for our Golden Oldies, the role and importance of geriatric care managers, and a touching story about former President Ronald Reagan and his son, Michael.

What Makes It Different?

The many personal stories woven throughout the documentary are what really stayed with me for days after I first watched it.

One of the most interesting segments for me was about Lloyd Drum, age 76, a recovering hoarder. His favorite collectibles were TV sets and bicycles. At one time Lloyd had 5,000 bicycles and bike parts inside his house and he slept in a reclining chair on the front porch! His hoarding habit created a life safety issue, and potentially legal consequences. Hoarding is defined as “the acquisition and failure to discard items that most people would consider useless or of limited value” and is a self-created abuse. His story was a real eye-opener!

Another story told is about Bertra Frank Latham, who suffered severe neglect at a nursing home when his wife (and primary caregiver) needed surgery and could no longer care for him herself. His family shares the hard lessons they learned through this bad experience and provides insight into how to select a nursing home for our Golden Oldies.

It’s not all “gloom and doom” however. There is a very uplifting segment in which Art Linkletter urges seniors, “Don’t retire from life. Stay busy. Stay interested.” Having a positive attitude as our Golden Oldies age and keeping families involved with their Golden Oldies are two keys to a higher quality of life.

Who Should Watch This DVD?

Everyone!

This speaks to our Golden Oldies about keeping a positive attitude, remaining active, and learning about potential scams so as not to fall prey to them.

This DVD speaks to us, their adult children, who are already caring for them or starting to plan for that experience, and who need to learn as much as we can about many aspects of eldercare.

And it speaks to the grandchildren who can learn how to help both their parents and grandparents go through the aging process.

Please go to Saving Our Parents right now and order this DVD as gifts for the people you love. Yes, yourself included. (Or you can click on the E-store link at the top of this page to order it there. I will make a few cents from the sale if you do.)

And after viewing it, pass it along to another family who will benefit from it.

If you belong to a club or organization, ask them to show it at their next meeting. And if you are a professional working with seniors, share the DVD with your co-workers and management team.

Saving our Parents is a wake up call that will help many people.

Six weeks ago I asked the TLeC community to participate in a survey by Ryan Malone, founder of Inside Assisted Living. The survey was initiated to better understand in which way and to what degree families are prepared for their loved ones’ transition to assisted living.

The results have been tallied and the free Assisted Living Family Preparedness Report has been released.

It is very comprehensive, and here are some of the key findings:

1. An overwhelming majority of survey respondents believe a friend or family member will require assisted living within the next ten years.

2. Respondents’ ability to pay for assisted living is the most frequently cited concern. They also have a self-described poor understanding of the financial aspects of assisted living (such as insurance, costs associated with room and board as well as private caregivers).

3. Families expect to play a major support role in their loved ones’ transition, including selecting a facility close to their homes and their loved ones’ existing medical care.

4. Families’ anxiety with regard to this transition include:

• Feeling guilty if they don’t visit their loved ones enough
• Hearing stereotypes about assisted living and not knowing if they’re true
• Fears their Golden Oldies will resent them, and
• Concerns about how the caregiving burden will impact them and their families

The complete report has more detailed information, graphs and analysis. Go to Inside Assisted Living now and read the free Assisted Living Family Preparedness Report. Learn where you and your family rank on the preparedness continuum.

Inside Assisted Living is a web site with practical information and resources to help you evaluate and prepare for the upcoming transition by your Golden Oldies to assisted living. And even if that occurrence seems way off in the future, it’s never too early to start getting educated about this phase of life. It will make it easier on all family members in the long run.

__________________________________________________

The Family Caregivers Communication Class series will continue in a few weeks. We still have lots to talk about.

Photo Credit: scart’s photostream

On Tuesday my blog received the honor of being selected as “New Blog of the Week” by Barbara Swafford of Blogging Without A Blog (BWAB)! On a weekly basis, Barbara selects one blog that is less than four months old and highlights it on her blog. You can read the lovely compliments she paid me here.

I want to send an enormous THANK YOU to Barbara for her support, encouragement and the many lessons about blogging I have learned by participating in her excellent BWAB community! If any of you are contemplating starting a blog, be sure to start reading (and commenting ) on her blog. Thank you, Barbara, for recognizing TenderLovingEldercare.com as a blog that matters!

You All Matter, Too!

Many BWAB members, both new and old, took time out of their busy day to send congratulations to me, make a comment on Barbara’s blog, or share personal stories about their own Golden Oldies. “Thank you” doesn’t begin to express how much those comments and emails mean to me!

If you haven’t visited these blogs before now, please do so (just click on their names below)! I am listing them because every one of them writes about things that matter!

Bamboo Forest

Davina

Scott McIntyre

Sunil Pathak

Lance

Al at 7P

John Hoff

Writer Dad

Jay

Ellen Wilson

Ann at One Bag Nation

SpaceAgeSage

chris

Annie

Vered

Ajith Edassery

Rita

Dr. Cason

T Edwards

Urban Panther

Linda

Natural

J.D. Meier

Shilpan

Evelyn Lim

Rajaie AlKorani

Ricardo Bueno

“Our lives begin to end the day we become silent about things that matter.”

~ Martin Luther King, Jr.

You have all motivated me to continue learning, growing and sharing even more!

With deep gratitude,

Linda

My Stroke of Insight: A Brain Scientist’s Personal Journey

by Jill Bolte Taylor, Ph.D.

This is not normally the type of book I read for pleasure; I’m much more of a fiction lover. But I heard a podcast interview with the author, Dr. Jill Bolte Taylor, and her compelling story had me buying her book the very same day.

What Is the Book About?

In 1996, Jill Bolte Taylor was a 37 year old brain scientist who experienced a massive stroke when a blood vessel burst in the left side of her brain. The amazing part is that she didn’t lose consciousness! Since she was a trained neuroanatomist, she observed her mind and body functions deteriorating over the course of four hours with a calm, scientific perspective, until help arrived and she was taken to the hospital. Her complete recovery took eight years, with the help of her amazing mother who was her nurse (not by profession), caregiver, teacher and cheerleader.

The knowledge and insights she gained from this experience make up the majority of the book. First, she briefly describes her pre-stroke life including her reasons why she became a brain scientist, her academic road and her advocacy interests.

There are several fascinating chapters describing the actual morning of the stroke:

“As a neuroanatomist, I must say that I learned as much about my brain and how it functions during that stroke, as I had in all my years of academia. By the end of that morning, my consciousness shifted into a perception that I was at one with the universe.”

The recovery chapters are an invaluable resource if you know someone who has had a stroke or other type of brain trauma. She has one Appendix titled “Forty Things I Needed the Most” which should be read by all medical professionals whose patients have sustained a brain injury.

She includes two chapters of “simple science” explaining how the left and right sides of our brain work, both independently and in tandem to create our perceptions of the world. Personally, I really don’t like science and had to force myself to read through this section. And I am so glad I did, because this scientific and medical journey transitions into Bolte Taylor’s spiritual exploration of her right-hemisphere’s consicousness, where she found a deep inner peace exists at all times. I wouldn’t have appreciated her “awakening” if I skipped over the brain lessons she provides.

“Based on my experience with losing my left mind, I whole-heartedly believe that the feeling of deep inner peace is neurological circuitry located in our right brain. This circuitry is constantly running and always available for us to hook into . . . Step one to experiencing inner peace is the willingness to be present in the right here, right now.”

So to my surprise, a book that started out as scientific turned into a beautiful lesson on spirituality, gratitude, love and compassion — and that we can find our deep inner peace if we just train ourselves to look for it. Who would have expected this could be written by a brain scientist?

Who Should Read It?

Obviously this book is for anyone who has experienced a stroke, is “at risk” for a stroke, or is caring for someone who is recovering from a stroke. Stroke is the third leading cause of death in the United States and the Number One cause of adult disability per the National Stroke Association.

But not all of our aging parents will fall into this category. So why do I think baby boomers should be reading this book?

Because Bolte Taylor’s lessons also apply to our aging parents who may have TIA’s (Transient Ischemic Attack, a “warning stroke” or mini-stroke) or be in the early stages of dementia or Alzheimer’s Disease. All of these brain diseases are more common in older populations, and baby boomers will be facing these types of medical issues ourselves as we age. It is important to be aware before a stroke happens.

I never expected a “medical story” to be so full of feelings. Bolte Taylor’s spirit and heart is an inspiration to all family members, whether they are the patient or the caregiver.

If you wish to learn more, below is the link to the book on Amazon.com:

My Stroke of Insight by Jill Bolte Taylor, Ph.D.

Have you read this book? Please share your opinions below.

Some friends bought their mother, another Golden Oldie whom I know and adore,  a cell phone – mainly to keep with her when she was out and about in case of emergency.  They purchased the phone and service, charged the phone, and went over the instructions for use in detail with their mom. 

P.S.  To their great frustration, their mom never used the cell phone and they wound up returning it! 

Sound familiar?  

If your Golden Oldies need a phone that is easy-to-use as well as easy-to-read, check out the Jitterbug cell phone by Great Call.  No extra frills like cameras, browsing the internet or text messaging; it was created and designed to meet the needs of our aging parents whose hearing, sight, and/or eye-hand coordination may be slowly diminishing. 

Watch this quick commercial by Jitterbug below to see it in action:

Jitterbug cell phones come in two models and they both feature:

• Bright screens with large text and numbers for easy viewing
• Powerful speakers for clear sound
• Soft-ear cushions that shield outside noise and make it hearing-aide compatible
• Large (fingertip size), backlit and bright buttons make dialing easier
• On/Off switch with a familiar dial tone so you know it’s on
• Yes/No buttons for easy navigation
• Operator button to reach a live Jitterbug operator 24/7 who can make calls, provide directory assistance and add names to phone lists

The One Touch model simplifies the design even more by having only three large buttons.  One connects to the Operator, the other to 9-1-1 and the third to a preprogrammed number of your choice.

Battery life is good, approximately 3+ hours of continuous talk time.  The only negative physical feature is that the plug-in connection to the phone charger appears small.

Even Jitterbug’s web site is clear, easy-to-read, has detailed phone demonstrations, an extensive Frequently Asked Questions section, customer support contacts, and a store locator to find out where to purchase one.

Each model costs $147, with no long-term service contract needed.  Service, also provided through Jitterbug, starts as low as $10/month, although usage charges apply.  There is a $35 one-time set up fee. If not satisfied with the phone, they have a “friendly 30 day return policy.”

A girlfriend who bought her Mom a Jitterbug phone told me,

“Customer service was great.  You have the option of calling them to set up all your speed dial numbers or doing it over the internet.  You can add and delete numbers at any time . . . I think they are used to working with older people and had tons of patience.”

Our aging parents’ needs and abilities vary tremendously.  If your parent is still active and wants to stay in touch with family and friends, it could be a great asset.  However, if your parent is starting to show signs of memory loss, it may be too difficult for them to use even the One Touch Jitterbug model.  I think it should be fairly easy for you and your parents to decide whether the Jitterbug cell phone is something to consider trying.  

And, it would make a wonderful birthday, Mother’s Day, Father’s Day or anniversary gift to Golden Oldies, while insuring our peace of mind that they can be reached, or reach you, whenever desired.

An important tip for cell phone users of all ages:  Use the light from your phone screen as a flashlight if you’re caught short without enough light.  I must give credit to my husband, who first used his cell phone screen light in a dimly-lit restaurant when we couldn’t read the fine print on the menu! 

Have you or anyone you know bought a Jitterbug?  What has been your experience? I welcome your comments below.

Here’s to more Tender Loving Eldercare in our world!