Tuesday, October 16, 2012

Caregiver Support Group News Tuesday,10/16/2012

A woman reports that her son and his family were coming to visit their dad who is in a residential facility. "Mom," the son said, "I am not going to take the kids in to see Dad." "OK." said Mom.
"Mom, I have something to tell you," he continued, "It is very hard for ME to go see Dad."
"How," the woman asked the group,"does he think it is for me to visit with his dad each day? Does he think I'm immune, or does he simply expect I am supposed to like it, that I don't need support? I don't need his confession and I can't excuse him from visiting his father. Where is his empathy for me?"
It is not easy, but visits can be rewarding. Getting an Alzheimer patient to smile or dance or to eat his whole meal makes me feel good. Creating happy moments, whether my husband enjoys the feel of the sun on his face when we are outside walking, or the taste of a chocolate brownie or an ice cream cone, when he holds my hand, not verbally able to express our relationship, but by squeezing my hand, I know he still knows we are connected--all these feel good to me and make my visits pleasurable. Of course we sing the "aba daba honeymoon" song, which is my name for the word salad that comprises so much of my husband's language these days.
I also experience my spouse's "use" of his dependence on others to get people (me) to do for him what he still can do for himself. For example, he completely refused to eat any of his dinner last night, so I placed a piece of food on his fork and reached to put it on his plate so he could pick it up with his right hand. No, he moved his face toward me, as if I were going to feed him. Althoug Bob sees others being fed, we are not going there. He is still capable of feeding himself even if he cannot tie his shoelaces anymore and I do reach to untangle them for him when he asks.

Sunday, October 14, 2012

100 words for Sunday,October 14, 2012


“Joie-de-vivre” is sorely lacking in my life although I play the game. I giggled and inhaled Donizetti’s opera at the HD movie today as magnificent voices extoled L’Elisir d’Amore while the protagonists manipulated each other for three hours.

Such is the game plan; write my heart out, sell myself in print and online to promote my book, visit Bob and watch him obsess about guns and feel unsafe because the care center “shot” the residents with flu vaccine. I must be positive and friendly, supportive and understanding, while my heart breaks as my husband no longer spontaneously calls my name.
When my mother who had Alzheimer's disease from 1992-2000 forgot who I was, it felt like a sudden loss. She said one day that I was " a nice lady who comes to visit" and that is who I remained. With my husband the process which has begun is much slower. He still knows who I am, but he sometimes refers to me as "she" when I am standing beside him. When asked, he can tell others my name when he sees me or a picture of me, but when I enter, he no longer holds out his arms to hug me in greeting and he no longer calls me by my name. He holds my hand and says "We're a good team" so I sense the connection between us still exists.
Unfortunately for my husband, he remains aware of his cognitive losses; he wants to sit beside me and talk but when he cannot express himself, he says so and wants to stroll. When he picks up a magazine, he is upset that he cannot read more than the headline and he has questions about words he still understands. This week it was "Family" from Family Circle magazine.
"Where is my family?" he wanted to know. I explained that they live far away, in Virginia, in New Jersey and his brother in Florida.When I showed him the pictures he has displayed of his children and grandchildren, he said, "That was so long ago." This afternoon his son from New Jersey will visit. Let's hope the time spent will be enjoyable.
 

 

Wednesday, October 10, 2012

Article posted in www.nycitywoman.com 10/10/2012

Self-Publishing: A Personal Journey

Phyllis Palm coped with her husband’s illness by writing a book; marketing is an uphill battle.
Phyllis Palm at BookExpo America, where she found her distributor.
Phyllis Palm could no longer ignore the changes in her husband Bob’s behavior. “Forgetfulness, mood swings, a growing dependency on me—for three years I pooh-poohed them all,” says the 74-year-old psychologist, who denied that anything was amiss in their 20-year marriage that had brought her such joy. But something was terribly wrong. “Bob has dementia, possibly Alzheimer’s,” said a neurologist six years ago. “I was floored,” says Phyllis, because at times Bob’s behavior seemed normal. But there were times when Bob screamed at her: “You whore! You nasty bitch!” Or accuse her of stealing his money. On a lawyer’s advice, Phyllis created an account of everything she was spending. She also began to record her emotional journey.
“It sounds funny, but instead of judging myself harshly like Bob was judging me, by writing things down I was able to understand: This was coming from his illness, his paranoia, and he was projecting his negative feelings onto me,” says Phyllis. “The journal became a saving grace for me.” It also became the basis for her book, Put That Knife Away: Alzheimer’s, Marriage and Transformation from Wife to Caregiver, self-published early this year.
The book happened gradually. Seeking a diversion from the chaos at home, Phyllis signed up for a class in memoir and nonfiction writing at The Writer’s Voice program at the Westside YMCA. “The instructor, writer Mindy Lewis, assigned us to write five pages a week, and so that’s what I continued to do, all summer long,” Phyllis says. “When class resumed in the fall of 2010, I handed Mindy eight chapters. Encouraged by her support and positive comments, I began to think that my story and coping strategies could help other caregivers. As I got more and more into the writing, Bob got worse and worse. At one point, he had a psychotic episode and smashed my computer. I had to call the police. Bob entered an assisted living facility in March 2011. I had tried to keep him healthy and independent for as long as I could.”
Phyllis next signed up for a seminar on writing a book proposal, researched literary agents, and sent the proposal and sample chapters to twenty agents whose names she found in literary magazines. “Nobody was interested,” she says. “A few packages were returned unopened, one came back with a very nice rejection letter, and that was it. So I put the manuscript in a drawer and forgot about it for three months.” In November of 2011, Phyllis decided, “I’m going to do this myself,” and she began to investigate options.
Marketing the Book
According to R.R. Bowker, which tracks the publishing industry, 211,269 titles were self-published in 2011. Some writers choose this as a way to capture a legacy—to produce a memoir or family history in a limited edition. Others view a book as a professional credential. Some authors cross their fingers and hope their book will make it to the best seller lists. And there are those, like Phyllis, who believe they have something to say that will help themselves and also others. All quickly discover a growing community of consultants and companies, each one claiming they’ll get the job done cheaper, sooner, better. It’s easy for a novice to feel overwhelmed.
“Decide what your goals are and then do your research,” advises Kevin Weiss, president and chief executive officer of Author Solutions, whose self-publishing companies include AuthorHouse, iUniverse, Xlibris and Booktango. “The beauty of Google is that you can search just about everything and everybody that’s out there, and then ask your friends. Self-publishing can be completely free or you can spend a lot of money, depending on how much you do yourself and the services you contract for. You should ultimately talk to the companies about what you need and what they offer.”
Phyllis chose Amazon’s CreateSpace and carefully followed the instructions on its website. “When things got too technical for me, I turned for help to my cousin Nora in Switzerland,” she says. “Then Nora and my daughter Linda, who’s a graphic designer, created the cover. Everything went quickly. Nora and I uploaded the manuscript. On December 11 we uploaded the cover and printed a first proof. I was jumping up and down with excitement. A third proof, on January 12, 2012, was perfect. I had a book! So far, the cost to me had been zero.” Had there not been a cousin Nora, Phyllis could have paid for a designer from Create Space, which offers services for every step of the publishing process. “Also important is the fact that I can order as many or as few books as I want at a time,” she says.
CreateSpace is only one of several companies that offers Print on Demand (POD) and lists the book on its online site. Per-copy cost to Phyllis has been $5.95 plus shipping. She’s priced the print book at $15.95, the Kindle version at $9.95. If she sells a book on Amazon, she nets $5.08.
Marketing the book turns out to be much more of a hit-or-miss affair. How do you get people to know about your book? “I was told I needed a Facebook page and a website,” Phyllis says, “so I now have both. I also created a blog: www.doctorphyl-heartofpalm.blogspot.com.”
Then she paid CreateSpace for a press release that went to 1,852 sites. But none of these efforts have helped. She then made cold calls to community centers, active adult communities, churches and synagogues, resulting in fourteen speaking engagements. “I was selling 6, 10, 12 books at a time.” By September, she’d sold only 325 copies, and knew that there had to be a better way. To get some wider coverage, she spent $1,800 for a booth at BookExpo America, the largest publishing event in North America, held at New York’s Javits Center, hoping to interest a media person in the book or find a distributor who would promote the book, store it, take orders and ship it. And I did.”
She signed on with BookMasters, a medium-size printing company that offers a variety of services to authors who pay a $495 application fee plus $40 monthly to maintain an account. She is considering a program in which BookMasters reprints the book (at $3.86 per copy if she orders 1,000 copies). Atlas Books, a division of the company, promotes and sells it.
“The title will appear in its catalog and salespeople will pitch the book to bookstores and libraries. Atlas also presented me with a multifaceted marketing plan to help me get on TV and radio shows. They want to do print advertising with three other books that they represent. They have a whole range of things that they’re willing to do, each at a different cost. It comes out to about $3,000, not including printing.”
If she sells 1,000 copies, she’ll probably break even for the ongoing costs of storing, shipping and printing, but not advertising or marketing. “I will get 10% of the cover price for every book that Atlas sells through a bookstore,” she says.“Do I go along with the plan or do I increase my own efforts—try to get more speaking engagements, put more effort into my blog? I think I’ll try that first. My goal for the book has never been to make a profit but to reach other caregivers. Still, I can’t spend all my retirement money to make that happen. For a first-time, unknown, self-published author, it’s an uphill battle.”
Claire Berman has written nine books on such topics as caregiving, divorce, step parenting, and adoption. She was a contributing editor at New York and has written for The New York Times Magazine, Parade, Reader’s Digest, and other national magazines.

-Is Slight Better than None? October 10,2012

Solanezumab is the name of a new medication from Eli Lilly which has been chosen for a long term multi-country trial to see where and how it has an effect on reducing memory decline. A drug from Roche was also chosen. Neither one of these is "the home run we were expecting" but there was a two point decline in a ninety point test of people with mild symptoms of Alzheimer's disease in a study of 1000 subjects.
Although Lilly reported a higher success rate by combining two studies and there is no immediate prospect of FDA approval at this time, the stock value soared.
The hope is that the effect of this medication will be long-lasting and that it will halt, not merely delay, the progress of the disease. Research is showing that any medication to treat Alzheimer's desease will need to target the very early stages of the disease. It is also growing apparent that Alzheimer's disease is complicated and that many different cellular structures are involved.
For us who are caregivers or children of Alzheimer diseased parents reaching middle age, it is important that we contribute to baseline knowledge by getting ourselves tested and watching for unusual symptoms in ourselves and our agemate siblings. We want to participate in whatever way we can to reduce the occurrence of Alzheimer's disease in the next generation. I know there is a fine line between self-awareness of symptoms and hypochondria as well as a huge attempt to both worry and to deny. Let's work to find that balance.
 

Sunday, October 7, 2012

100 words for Sunday, October 7, 2012


September 29, 2012. Steve and I anxiously watch my husband eat every morsel at The Village Inn after consuming several saltines and coffee while waiting. We decide to get both guys haircuts at Sports Cuts, complete with football insignia décor and the game blaring on several television monitors. They love the attention. For ten minutes on the way home we are treated to Big Sky Arizona. To our west, the golden orb of the setting sun blazes , as to the east the pale yellow beachball harvest moon rises slowly and seems poised between two peaks of the Superstition Mountains.
During the week that has passed,Bob has maintained an awareness that is enjoyable for him and for me. We have been to the dentist which luckily was uneventful. Bob has told me he cannot read the Popular Science magazines, so we went to the library and purchased used copies of Arizona Highway, Ranger Rick and Family Circle for him to look through and see the pictures.
Today is our twenty second wedding anniversary; I have brought cupcakes for the residents and a cake for the staff and guests to share at lunchtime. We will design the day as it unfolds. I am attending several films this weekend at the Scottsdale Film Festival that Bob would have loved. Both films I saw yesterday were so very different, one about an elderly Muslim couple in India preparing to make a lifelong-desired trip to Mecca and the other about a family of children walking through war-torn Germany in the immediate aftermath of WWII, who have to reevaluate their lives and everything they have been taught or expected to experience.We cannot live our lives by expecting certain outcomes. We will definitely be disappointed.
But if we live in "now o'clock," appreciating the opportunities for learning, for the possibility of close family and community support and for our environment, we will be flexible enough to enjoy and contribute to this path we travel once, "in joy and in sorrow, in sickness and in health...."

Wednesday, October 3, 2012

Hillel quote-Relevant for Today? October 3, 2012

As we listen and watch tonight's presidential debate number one, instead of checking for minute gaffes and slips of the tongue, perhaps it might be better to concentrate on the meaning of what each candidate reveals about himself. To whom is each beholden? What keeps each from being true to himself and his ideals, his hopes for the future?
Hillel's quote:
"If I am not for myself, who is for me? And if I am only for myself, what am I? If not now, when?"

Who else does each man represent? Which others is he "for?" Does that include you? Or me? Or others in your group whether they are unemployed, underemployed, retired, disabled or wealthy?

Hillel was a rabbi who lived 2100 years ago. Yet his words live on today. We are responsible for ourselves, of course, to the extent possible. We must promote ourselves, ask questions, make decisions and improve our lives, but not without considering the needs of our families, our neighbors, our communities. Each of us thrives when we all succeed; we are all lessened when a neighbor or even a stranger is refused medical attention because  the working member of the family lost a job and the family's health insurance.

On the subways of New York it seems to be the less well off among the riders who give money to someone begging; they know we cannot wait for the wealthy to decide to donate money to charity. Institutions must be in place to assist us when we need help as they have been for many years including medicare and medicaid. We need a method for keeping these programs solvent, not for dismantling them. Listen for answers tonight please.www.facebook.com/phylliswpalmphd

Saturday, September 29, 2012

Remember to Vote, early or on time. Sept. 30, 21012


 
The first presidential debate will occur on Wednesday. As we listen, let us ask the following questions:

1. Which candidate will support Alzheimer’s research for a cure with a commitment for another 100 million dollars?

2. Who will spend money to support the 14 million caregivers of Alzheimer’s disease and other dementia victims?

3. Who will commit to providing financial relief to the often impoverished spouses of demented loved ones who need the safety and protection of residential care?

4.  Who will keep the funding for the police to find missing demented loved ones when they have wandered away from home?

5. Who will provide respite care for the millions of family members who keep their loved ones at home?

6. Who will support end of life discussions with medical and mental health providers so that families know what is reasonable to expect and what drastic measures if any should be taken at end of life?

Get educated. Listen carefully and Vote— vote in your best interest for the candidate who will support you and your family member or friend who has or may soon be afflicted with this devastating disease. It could even be you or me.