Fiona King of RNCentral.com sent me an alert of an article posted to their website: 50 Communication Tips and Techniques for Caregivers authored by Jessica Merritt.
The 50 tips are grouped into (paraphrased) five categories: 4 Tips on Communicating with a Person who Suffers from Memory Loss 5 Tips on Speaking with your Care Recipient 8 Tips on Enabling your Care Recipient to Pay Better Attention 6 Tips on Ensuring you Communicate Effectively Nonverbally 10 Tips on How to Behave with Your Care Recipient 17 Tips on Communicating with Others--e.g., doctors, family members, insurance
Check it out at 50 Communication Tips and Techniques for Caregivers
A quick review of these tips is especially recommended over this 4th of July holiday weekend when families get together, children are playing, firecrackers are popping, and our loved ones are left feeling more confused and even afraid.
In Saturday's Blog Entry (20 June 2008), I offered to share a few hunches, opinions, and facts regarding what we need to do to pay more attention to a potential worldwide crisis --a looming Alzheimer's epidemic.
In 1997, when I began writing about dementia, caregiving, and Alzheimer's, there were a handful of titles available for caregivers. Since then, caregivers have been responsible for writing hundreds of books over the course of a decade. Amazon.com lists nearly 2,600 titles after an advanced keyword search for "Alzheimer + care." Incidentally, a similar search for "caregiver" produces over 40,000 titles while "Alzheimer" nets nearly 37,800. With all these books about caregiving and Alzheimer's, why is so little attention focused on this disease and the families whose lives it turns inside out?
First, many caregivers are first-time authors who want to help others by sharing their experience. They try to get the word out by talking with friends, family, writing blogs online, and also by turning to the Alzheimer's Association. Surprisingly, the Alzheimer's Association has been turning down requests to review, endorse, or help promote others' titles. Years earlier, I was told and now, more recently by authors, that the Alzheimer's Association receives too many requests. One chapter representative told me, instead of risking offending one person, they're turning everyone down. I think this is a mistake because the Alzheimer's Association needs these grassroots partnerships from impassioned families promoting the cause.
Second, with significant budget tightening among the print and broadcast media, competition is growing fierce for airtime or print space. Consider the kinds of topics covered in the media today. It is said: If it Bleeds, it Leads. Or, these days, if it floods (Midwest) or burns (California), there will be coverage. Can you imagine Oprah Winfrey airing a provocative show around the JOYS of Alzheimer's? I think this would make a GREAT SHOW!
Third, those of us who serve families journeying down the road of dementia, caregiving, Alzheimer's, and other brain impairments are fragmented. There are so many websites, organizations, and resources, the already overwhelmed family member becomes confused: Where should I turn? Which resource is a credible resource? I don't have enough time to care for my loved one while trying to live my life! How can I find best organization to help me? Instead, today's caregivers forge ahead, reinventing how to best provide care despite the readily available information that could help them more easily provide better care.
We who serve these families need to integrate our resources (co-promote, review, refer) in order to present a more cohesive front to the family caregiver.
Incidents of Alzheimer's have increased 25% during the last decade. If we don't focus more attention on to this disease and the plight of family caregivers, we will witness an epidemic that will affect us.
The Caregiver's Voice has started by reviewing books and other resources sent to us in order to get the word out and to raise awareness. Additionally, we are partnering with others to increase awareness.
Will YOU join us?
This will have to wait until my next post (on Monday), because a caregiver wrote to share her thoughts on the January 20th blog. Since I neglected to post these when she sent them (on the 23 of June), I will share them now.
Anne Richardson, caregiver, writes: I agree that there are too few books on caregiving! I have had to "learn by doing."
Our family keeps a blog about caring for our mother with Altzheimer's at: The Mother Project--Healthy Aging
Like you, we have learned that (Anne quotes an excerpt from "Where's my shoes?": In the hours I've spent with Mardig, I've learned little things matter most.
I wrote to her: Dear Anne, Thank you for writing. I did access your website and am unclear where your posts are. I searched for your name and no posts matched. Please provide more info and we may include your eMail and link in our blog.
Anne wrote back: Three people post on The Mother Project blog. The two other bloggers on the site are my mother's paid caregivers, Marcie & Margaret. They sign their posts with their name. All other posts are by me. Our family is keeping Mother in her own home as long as possible. My husband and I live with her. So far, because she is physically very healthy and because we have been able been able to find two great CNAs to alternate caring for her during the day, we have been able to make this work.
So we have the best possible scenario: a caregiver ratio of 4:1 (four caregivers to one Alzheimers patient), although of course we are never all here at the same time!
THANK YOU, Anne Richardson, for writing and sharing how you're insuring your mother receives quality care in her own home. If all of our loved ones had a choice, it would be to live at home. What a wonderful tribute to your mom that you are maintaining a blog and able to help other caregivers who are just starting the road of Alzheimer's caregiving.
Book Expo America, the largest tradeshow for those in publishing and the book trade, was held in Los Angeles just last month.
As a publisher and a long-time author, I attended, wanting to find new titles on dementia, Alzheimer's, and caregiving.
I was disheartened to find none. Well, maybe one or two. But when faced with a 25% increase in the number of diagnoses of Alzheimer's in one decade, and nearly 200,000 books published annually, the subjects of caregiving, dementia, and Alzheimer's should play a more prominent part.
As a publisher and a member of the media (primarily because of this website), I review books. Many come from caregivers who write their story with great hopes of helping the masses (I started in this field in 1997 with the same aspirations and two years later with the first edition of "Where's my shoes?" My Father's Walk through Alzheimer's. What often happens, is they can't get wide enough readership. And despite their valiant efforts, they give up leaving either the few hardy small publishers (like us) or the big houses, who after the first few months, stop promoting the titles (if they even did at all), and sell all the returns (books returned from the bookstores due to lack of sales) to the remainder houses for ten cents on the dollar.
Why is there not more interest?
Please stay tuned for the next blog, when I share a few hunches, opinions, and facts and what we need to do about these to reverse this trend and get more attention paid to this looming epidemic.
What a surprise when I came across a state by state resource for family caregivers while reading the June edition of Mather Lifeways' Aging in Action news e-letter.
Access the Family Caregiver Alliance's State by State Directory
You'll find a wealth of general information to contact information for organizations representing specific diseases. You'll locate services for keeping your loved ones at home to services to help you the family caregiver. You'll aslo find contact information for government programs.
Whether you live in North Dakota, California, Alaska, Wisconsin, or even the tip of Maine, you'll find this resource listing a valuable start to aiding in your caregiving.
Professionals: please be sure to share this valuable resource with your families.
Just one month before my father's ninetieth birthday, I jotted down the following notes from a conversation I had with my husband, David, and my father, Martin, at the nursing home where Martin lived.
Martin: “What time is it?"
Brenda: "11:40."
My father doesn’t say a word but looks at me strangely.
David takes off his watch to show my father.
My father tilts his head to focus on David's watch.
David confirms the time: "See, it's 11:40!"
Martin: “Looks good enough to eat ... and then pass through and get rid of."
David tries to have fun with my father, and puts the watch in his mouth. Pulling it out, he asks, "Why would I want to eat my watch?"
Martin inquires, "When?"
Edited excerpt from Finding the JOY in Alzheimer's: Caregivers Share the JOYFUL Times, 2006 Updated Edition, North Star Books, Brenda Avadian, MA.
"Oh, I'm glad you're here!" he said with a bright smile.
His eyes told the truth. He no longer remembered his daughter with whom he shared a birthday. He looked right at me. I could have been the nurse's assistant or an aide. Sometimes I was his son.
"Happy Father’s Day!" I said, with as much enthusiasm as I could muster.
"Father’s Day?" he asked. "Who's the father?"
"You are!" I said, hoping he would remember.
"I am?" he asked, pointing awkwardly to himself. He paused, and then shaking his head, retorted, "You’re the father!"
My mother ironed my father’s pants, shirts (both dress and work), handkerchiefs, and boxer shorts. She would even iron the linen sheets and pillowcases.
I’d stand by her in the living room and watch, sometimes trying to help, but mostly getting in the way. She would place the ironed clothes on the floor, and I’d play with the neatly arranged pants and shirts. I’d fold the legs of my father’s pants into funny contortions. I’d do the same with the arms of his shirts. She’d shoo me away, but I’d return.
Remembering these times, I carefully tried ironing a few of my mother's treasured doilies, handkerchiefs, pillowcases, and tablecloths, all featuring her tsera khordz (Armenian for embroidery).
It’s been nearly forty years since I thought about Ma ironing. Today, I am my mother, and the child I was, is standing by her side wearing a cotton pleated dress, white embroidered anklets with lace trim, and black patent leather shoes. Like her, I carefully lay out the material then glide the steaming iron on top, being careful not to accidentally press a crease into the material or get the tip of the iron caught in the embroidery.
Wow, such labor-intensive work! Still, I need to iron these things. I feel I am honoring my mother. It is the one time I feel able to connect with the extent of her responsibility and desire to make sure we all looked presentable.
In honor of Mother's Month and in my mother’s memory, I will iron all of the pieces of her tsera khordz and then wrap them carefully in tissue paper and place them inside white gift boxes. I will pull them out from time to time and display them. In this way, I acknowledge my mother's work and enjoy reliving these memories.
This is an abridged and edited excerpt from: "Where's my shoes?" My Father's Walk Through Alzheimer's in commemoration of Mother's MONTH.
Please refer to the May 2008 article at "Forget About Mother's DAY, Let's Celebrate Mother's MONTH"
When I returned to my childhood home to spend time with my father who was showing signs of dementia, I looked around the garden and realized how much a mother's touch is needed and missed. My mother passed away fifteen years ago.
The garden had long been unattended. It was now an overgrown array of wild weeds and flowers, with the exception of four trees—-my father's famous apple tree, my mother's pear tree, and the two evergreen seedlings my mother planted shortly before her death. The evergreens were about a foot tall when she planted them; now they stood over eight feet high. I could only guess what flora and fauna inhabited the overgrown urban ecosystem.
My thoughts went back many years to when my mother watered her vegetable garden. I enjoyed sitting on the back steps smelling the freshly watered plants. Sometimes, when the wind blew just right, a light cool mist would tickle me.
Happy Mother's Day!
Just kidding! It sure seems like every article we read is telling us what NOT to do. Where's the fun in not being able to do stuff? Seriously, much of the research in Alzheimer's (most common cause of dementia), points to healthy eating and living in order to delay the occurrence of Alzheimer's.
Moderation is the key. And moderation isn't all that bad. It leaves room to enjoy a breadth of experiences, tastes, smells, sounds, feelings. Variety is the spice of life, after all.
So, when you want to order that large order of fries, consider downsizing and enjoying something else. And make sure to enjoy the aroma, texture, taste, and even feel of each fry instead of grabbing a bunch 'n stuffing 'em in your mouth!
And after you've savored those fries, be sure to visit a park for a 15-minute walk and enjoy the sights, smells, and sounds of nature in springtime. I guess, I'm overdue for a walk! See ya' later!
Read today’s BBC article on Bad Habits and Alzheimer’s Disease .
What a gift! Joe Fostino had a saint for a daughter-in-law! How else can one describe the heroic deeds simply told? The highs, the lows; the joys, the tears; the frustrations, even the anger; and the commitment--yes, the unwavering commitment of a loving mother of five who devotedly cared for her father-in-law in a manner unparalled during the past decade.
Alzheimer's: A Caretaker's Journal begins with a brief history of war hero Joe Fostino and features letters from Joe's son (the author's husband) and two of her five children. Fostino then opens her private journal for the benefit of caregivers, family members, and all who want to learn more about caring for a loved one with Alzheimer’s disease.
If you're a caregiver or plan to be one, do yourself a favor, buy this book! If you know of a caregiver who could use a helping hand, give this book as a gift. If you are a professional, share copies of this book with your clients.
You will be warmly touched and heavenly inspired by the story of St. Marie Fostino, who juggled long work hours while lovingly tending to her father-in-law's day-to-day needs for two years until his final breath.
Considering Stroke is one of the top three causes of death among older Americans, and that the brain is the focus of Alzheimer’s (people with Alzheimer’s die of stroke), access this link to watch an eye-opening presentation by brain scientist Dr. Taylor in Monterey, CA at the TED Conference, earlier this year.
Amazingly, she was able to detail the entire experience--seeing her body from the outside, trying to make sense of numbers and talk. As a brain scientist, her initial reaction (while suffering a stroke): “COOOOOL!”
Dr. Taylor’s experience and eight-year recovery period leads her to advocate for more right-brained functioning—see why. Her presentation can redirect the course of your LIFE.
Check out the 18-minute video at When a Brain Scientist Suffers a Stroke
In the midst of helping your loved one eat, the telephone rings. "Not again! That D4#@! phone, again!"
As you sit down for a quiet and rare moment to rest, there’s a knock at the door. Before you duck and take cover, your neighbor walks in (you left it open) with good intentions--a freshly baked casserole. Seeing you on the floor (in your futile attempt to hide), she hurriedly places the casserole in the kitchen and returns to assist you. You weigh the benefits of the already prepared meal with the obligation to talk with your neighbor.
Sometimes, the small stuff makes us overreact! This is when we know we're in trouble and when we need to rest or get away. If we don't, even a lone ant can raise our heartrate, our blood pressure, and stress level.
If you feel stressed, take time for a respite, NOW! Take your loved one to an adult day care center* or ask a family member or your well-intentioned neighbor to look after him/her for a few hours while you get away.
Returning from a respite will make a big difference in how you feel about yourself and the quality of care you provide. This is no joke.
* Studies shortly before the millennium show that use of Adult Day care services at least 2 days a week for at least 3 months have a stress-reducing capacity among caregivers.
Today, someone develops Alz. Every 71 seconds.
10,000,000 Baby Boomers will develop Alzheimer's in their lifetime. Hey, that's me!
Over a decade ago, there were 4 million people with Alzheimer's in the US; today, there are over 5 million--a 25% increase!
Worldwide, the numbers are staggering at an estimated 26,000,000.
And remember, Alzheimer's is terminal--it will kill you...unless there's a cure.
For the complete report, click on: 2008 Alzheimer's Disease Facts and Figures
According to recent reports, our federal government spends $2.6 billion a year for the research and treatment of HIV/AIDS, which affects 1 million people in the U.S. That's $2,600,000,000 or $2,600 per person afflicted.
Compare this to only $645 million ($645,000,000) last year (down $7 million from the year before) for Alzheimer's disease, which affects 5,000,000 Americans, that's only $129 per person with Alzheimer's.
And that number is expected to reach 13.2 million by 2050.
Let's hope our goverment gets their priorities in order soon, before they get Alzheimer's!
Tell us what you think. Write to us at Alzheimer's Vs. HIV/AIDS Funding
Pratchett says on the Alzheimer's Research Trust website: "I am, along with many others, scrabbling to stay ahead long enough to be there when the Cure comes along. Say it will be soon."
Yet, he like others worldwide is arguing for a greater proportion of funding for Alzheimer's, which historically lags other diseases and illnesses worldwide, like AIDS, Cancer, and Heart Disease. Pratchett continues: "There's nearly as many of us [with Alzheimer's] as there are cancer sufferers, and it looks as if the number of people with dementia will double within a generation. In most cases, alongside the sufferer you will find a spouse suffering as much. It is a shock to find out that funding for Alzheimer's research is just 3% of that to find cancer cures."
What do you think? Please write to us at Alzheimer's Vs. Cancer Funding
Actress Jane Seymour, known best for her TV role as Dr. Quinn, Medicine Woman is also the author of several books, one, which I recommend for caregivers feeling challenged. Is there any caregiver who is not feeling challenged?
Seymour's Remarkable Changes: Turning Life's Challenges into Opportunities is worth a second read. If you've not read it before, then get a copy (see link at end) and read about how this celebrity with a supposedly perfect life has had her fair share of struggles and continues to work to overcome them.
Using her own life stories, those from celebrities, and ordinary people whose lives have intertwined with hers, she weaves a seven-part tapestry in how we can help ourselves through life's struggles.
A spiritually grounded person, Jane gives us a refreshing read as she works to overcome life's adversities without resorting to drugs, alcohol, and other self-inflicting abuses as today's celebrities often do.
Personal Note: My husband and I met Jane and her lovely mother Mieke (we simply fell in love with Mieke!), while signing copies of our books at the LA Convention Center in 2003.(Sadly, Mieke recently passed away.)
Find Jane's book here Jane Seymour's Remarkable Changes.
Early Onset Alzheimer's--powerful 10-minute online video from the New York Times on early onset Alzheimer's—people diagnosed younger than age 65. NY Times Video: Early Onset Alzheimer’s
Also, get informed. Read one of the more informative and comprehensive articles published recently on and progress with Alzheimer's research. NY Times Health Article: Finding Alzheimer's Before a Mind Fails.
Please note, availability to these links may only be temporary.
Our population is getting older. We’re getting older. If we have the choice, we’d like to grow old in our communities. How can we make this happen; especially, when not all communities can provide such services?
Participate and learn how. For more information or to register free of charge, visit Aging in Place.
Briefly, the Phase II study to test the tolerability and safety of the drug, showed significant cognitive improvements after only two weeks for a 150 mg daily dose.
PRX-03140 stimulates acetylcholine production; whereas, Aricept (Eisai and Pfizer) inhibits the loss of this neurotransmitter that allows the brain to function. Inexplicably, when both were tested together, they did not produce statistically significant results beyond PRX-03140, alone.
More testing will be underway in a Phase IIb trial early 2008.
For more information visit the Epix website at: Epix Pharmaceutical's Alzheimer's Drug
Nearly five million people in the U.S. and 26 million worldwide suffer from Alzheimer's disease.
