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Tuesday, October 30, 2012

Superstorm Musings October 30, 2012


 
Along with millions of others, I have been glued to CNN watching the progress of the storm from the safety of my home in Arizona. My thoughts are with my friends and relatives who were in harm’s way and who now still are without power and fearful of falling debris. I am relieved that so many are safe and warm at home with plenty of provisions to keep themselves fed and comfortable. My heart goes out to those who remain fearful of the near future, caregivers who are confined with their loved ones who are unable to receive the services that are temporarily halted by the aftermath of the storm.

Please, if you know of families near you in the area affected by the storm, who are older or caring for a dependent child, parent or spouse, please check to make sure they have the basic necessities to get through this time when transportation and other services are minimal. The closest recollection I have is to blizzard conditions in New York and in New Jersey when power was out due to wire damage from downed trees. It was heartening then to see people working together to help each other and share flashlight batteries and radio information as we all wanted to know when the power would return so we would know if our refrigerated and frozen food would last.

Does proximity breed empathy? Am I more concerned about the Superstorm because I have personally lived in two of the states affected and have relatives and friends all along the east coast? Am I more concerned about natural disasters which occur in countries I have visited where I feel a personal connection to the people concerned than I was last summer when the tornadoes devastated the Midwest where I have never visited and where I do not have friends or family who live there? Is there a mental health switch imbedded within us that limits that concern so that we can function within our own lives? We could become consumed with depressive thoughts if we constantly dwelled on our concerns for others’ suffering. Once again, there is a balance I strive for in my life. I have checked on those I could reach, I have watched the news, now I must turn off CNN and go on about my day.

Sunday, October 28, 2012

Jealousy-100 Words for Sunday, October 28, 2012


Shakespeare and Verdi, Johan Botha and Renee Fleming, jealousy and intrigue, once more the tangle of deceit, this time evoking love destroyed by jealousy. The innocence and incredulity of Desdemona to believe her love capable of being doubted combines with the insecurity of the powerful Otello to feel loved for himself. Was she unfaithful because my face is black? he wonders. The music thunders and caresses, echoing and raising the emotional tension as each of Iago’s schemes unfold. I love having the opportunity of seeing the live performances from the Met on widescreen including the behind-the-scenes glimpses of the set preparations.
Emotions and feelings are universal and Shakespeare wrote so poignantly about all of them and the tensions that are raised between people. How much more difficult it is to maintain our confidence in ourselves as we witness the disintegration of someone we love.First, when a situation arises in which we feel threatened by someone we love, we feel as Otello does, doubtful about  ourselves; we doubt if we were ever deserving of the love or even the friendship we felt we had. Then we become angry with the other person because we feel insecure, because the balance has been shifted. Who is she or he to make me feel this uncomfortable? we think.
If we act on these feelings, looking as Otello does, for "proof" of our suspicions, we will find them and destroy our relationships too. If we are so trusting, as Desdemona is, not believing anyone could think badly of us, we lose as well since we cannot face the challenge of the situation. This situation forms the tension for a great play which ends tragically. How can we resolve conflicts with people we love and have put our faith in without destroying the relationship?
Of course this is especially true when a loved one is ill and becomes dependent; the balance of the relationship shifts to one provider and one receiver and often feels unbalanced. We echo the feelings we had as adolescents when the balance had to switch from receiving child to adult responsibility for our relationships with our parents. Adapting to change is hard and most of us find it difficult to adjust without feeling angry or jealous. We need to recognize our feelings, talk about them and not act them out in a violent and hurtful fashion.
I struggle with my feelings when something I have planned to please my husband doesn't go well; I feel angry with myself for "expecting" Bob to appreciate my effort. I feel angry with him because he isn't able to. I feel disappointed with each of us. Attending a support group, watching the opera with a friend, having dinner with family, all help diminish these feelings and to turn my mind away for a short while, but caregiving for a loved one with Alzheimer's or other mind damaging dementias is all-consuming.

Tuesday, October 23, 2012

Harvest Festival October 23, 2012


The street plus two parking lots are filled with cars; the wide open field is framed by rented huge blow-up jumping, crawling and climbing apparatus. Ticket booths, face and pumpkin-painting for the little ones, plus a pie-in-the-face for the winner of the super box-top collector complete the suburban Harvest Festival scene with parents watching encouragingly as children  joyfully take shoes off and on, stand patiently in line, jump and play  and eat ice cream which would make my stomach turn, but not theirs, I hope.

The difference here once again is the huge Arizona sky as the sun sets below the distant mountain peaks, leaving streaks of pink to the west, which slowly meld with shades of dark blue as night slowly approaches. Two policemen stand by their open vehicle which the children are welcome to explore. They climb in and out examining the computer, the lights and suddenly realize there is no way to exit from the rear of the car once the doors are shut, which surprises and frightens them a little. One boy asks the officer, “Have you ever arrested anyone?”

“Yes, son, far away from your world I have arrested people.” We must all be thankful for the safety and the security we have in our corner of the world and at the same time we must be mindful of the need for others to achieve the same peace we enjoy.

Sunday, October 21, 2012

How Sharp are We? Sunday, October 19, 2012


Sunday's 100 Words
Change of perspective. I saw “Into the Woods” Saturday with two age-mates and my daughter. Linda reported we each napped during the performance. I thought I was the only one who could no longer focus attention consistently for two hours. Linda directed my driving as if I were a teen on a learner’s permit. After lunch, I fetched the car so we would arrive at the theater on time. All applauded that I found it. In fact, the car found me; the emergency button sounded when I was in its vicinity. A bit of Luck after a moment of panic!
As caregivers for Alzheimer's diseased loved ones, we are both omnipotent and fragile. There is so much more we must accomplish and fewer skills as we age with which to do so. The stress is exhausting, the waiting is strenuous and the expectation of my own not-so-distant disability potential frightens me more each month. I am becoming more involved in marketing my new book Put That Knife Away-Alzheimer's, Marriage and My Transformation from Wife to Caregiver. The publicity in the local paper was fun and sales are increasing, albeit slowly for now.
Everyone who reads my book has something good to say about the experience. "It is easy to read," "It is hard to put down." A woman I know has asked her grown daughters to read it too. "We have never been touched by this problem," she confided, "so we need to be educated, to be prepared to help each other or friends whose loved ones are effected."
My husband's teen aged granddaughters wrote their grandfather a note this week with their school pictures attached. "We miss you soooo much, more than you will ever know." He showed me the pictures and said "family." Right on! Keep those cards and pictures coming. They are so important as they kindle the remaining lights which shine for another moment as his darkness grows within.

Friday, October 19, 2012

Hot Off the Presses Friday, 10/19/12

‘Transformation’: Husband's Alzheimer's battle inspires Mesa woman's book
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Posted: Friday, October 19, 2012 9:41 am
In an increasingly digital world, aspiring authors have more options — and cheaper ones at that — for self publishing. But with self publishing also comes different challenges, said a new Mesa author.Phyllis Palm wrote “Put that Knife Away — Alzheimer’s, Marriage and My Transformation from Wife to Caregiver” after her husband’s Alzheimer’s diagnosis. It began as a diary in 2008, Palm said.“My attorney said I should keep track of all of the expenses on (my husband’s) behalf,” Palm said. “I started writing everything. And it became my sanity.”
Palm and her husband, both originally from the East Coast, had two homes, one in New York and another in Mesa, she said. It was during a summer in New York that she decided to take a writer’s course at a YMCA.
“By the end of the summer, I had eight chapters written,” Palm said.
With a little encouragement, Palm began to flush out her book with more chapters, including some details of other’s experiences with the disease.
“I’m still giving back,” Palm said, who retired from her psychology practice to take care of her husband. “I’m still participating in my field using the skills that I have.”
Palm also now volunteers as an Alzheimer’s support group coordinator. Dementia is like an umbrella, she said, and Alzheimer’s is just one spoke.
What makes her book different from so many other memoirs is her background and her intent, she said. She sees this topic becoming more important as the “Sandwich Generation” begins caring for their elderly parents while they also raise children.
“I can show caregivers are not alone, that those uncomfortable feelings are normal,” she said. “I can express myself about more challenging parts more candidly, especially things like sexual misbehavior. They can read about it and then feel more comfortable talking about it.”
In a chapter, Palm describes the title of her book, the last evening she cooked for her husband in their home.
“My husband was a sweet, kind man and he turned into an aggressive, angry one,” Palm said.
One night Palm was making dinner while her husband napped.
“You know how with kids when the house is too quiet? It was like that, only I thought he was napping, so I thought it was okay,” she said.
While she cut a roasted chicken, she heard Bob come up behind her and say, “Put that knife away. You’re scaring me.”
She put the knife down and turned. He brandished a bread knife in front of her face, she said.
“Because I have one too,” he said.
After wrapping it in a cloth napkin, he took it into his office and hid it among his things, Palm said.
“We played a lot of hide and seek,” Palm said describing how Bob would hide objects throughout the house. “But with a knife, I couldn’t.”
A little time later, she called her husband to dinner, hoping he had forgotten the incident.
“I’m not going to eat anything you cook,” he informed her.
“I knew then that I wasn’t going to be able to keep him at home,” Palm said.
She chose Amazon’s CreateSpace to publish her book, but publishing it was a challenge.
“The thing about self publishing — you get no help from nobody,” Palm said with a laugh.
Instead, the company charges for help from editing to cover design.
“My cousin Nora from Switzerland helped me with a lot with it,” she said.
Palm’s cousin and daughter, a graphic designer, designed the cover and helped upload the manuscript.
The first proof had problems with the pagination, while the second had a white trim around the cover photo and the writing on the spine was upside down, but the third proof was perfect, Palm said.
“With my cousin’s and daughter’s help, I had very few expenses until I had to get the ISBN number, and of course, ordering copies of the book,” Palm said.
The ISBN, or International Standard Book Number, is a 10 or 13 digit number used to identify books.
Marketing has been her biggest challenge, Palm said. She paid CreateSpace to write and distribute a press release, but with little result.
She then began speaking and promoting her book at community centers, adult care homes, churches and synagogues. While she has explored options with small distributors, most of the options involve investing money to get a larger return on her book.
So for now, she’s sticking to selling her book with a smaller budget. After all, she said, she’s not trying to make money, but help other people like herself.
For now, it means taking things slow and learning to adapt to the ever evolving relationship with her husband.
Bob doesn’t remember Phyllis’ name anymore, nor does he greet her with a big hug when he sees her, she said.
Leaving her husband in a residential care facility has been extremely difficult, Palm said.
“Pull — like that of a mother who is nursing a child,” she described. “I feel drawn to taking care of him, but at the same time, I know I can’t do it all.”
Recently, Bob saw a picture of the two of them and said, “That was a long time ago.”
The pictures of a past that he doesn’t remember don’t carry any sentimental value. Instead, he seemed to relax after the frame contained a more recent picture.
“We can still have positive moments,” Palm said, detailing trips to Bob’s new favorite restaurant, Village Inn, where he gets “real food” (also known as eggs, sausage, hash browns, and pancakes) and expeditions to Red Mountain Park. “These memories are my memories. Even though he won’t remember it, it can be a joyful time.”
Palm continues to write on her blog at doctorphyl-heartofpalm.blogspot.com. You can also purchase her book at www.phylliswpalm.com. It is also available as an e-book for Amazon Kindle and Barnes & Noble Nook.

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 d├ęcor 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