Follow by Email

Saturday, December 29, 2012

Disappointment 100words Sun.December 30,2012


Holiday visits don't go as well as desired; gifts often show less than thoughtfulness or awareness of who we are and what we value. Longing to have everything go smoothly, we often raise our levels of expectation beyond the possible, surpassing the probable or the highly likely. Guests often say what is on their minds, listening in-laws disregarded. Teens and young adults sometimes are not participating as we might wish (if they bother to appear at all.) Remember: these perceived faux-pas are not about you. Forgive, let the snubs and slights roll away and resolve to reduce expectations next year.
Unfortunately, these disappointments take on further weight for caregivers who are generally stressed and unable to be flexible enough to shoulder the difficulties of being a host or a guest.I remember hoping that the family being present would give me some respite from always wondering where my spouse was or what he was doing. When my daughter reported that her in-law complained that my husband was "double-dipping" his potato chip into the onion dip, I was crestfallen. Why don't people understand, I wondered.
My more recent goal is to attempt to turn caregiving into comfort instead of crisis which involves lowering the bar of compliance even further than before. Whatever makes us feel comfortable is okay even if it is wearing slippers instead of shoes, eating with a spoon or even fingers, leaving the table during the meal or emitting unecessary mouth noises. Let's try to find some joy in caregiving for 2013.

Friday, December 28, 2012

Happiness December 28, 2012

Steve and I walk into the memory care facility  to see my husband Bob standing at the kitchen counter where he usually interacts with the staff, but he is facing a worker and the director of residences, who is seated on a chair receiving a neck massage from the worker. "Hey, Phyllis, do you want to be next?" Maria invites.
As I stop to greet them, Steve  walks around the group and is at Bob's side,  who turns toward Steve and says, "I am happy right here."

We all hear him, we all repeat his words, smiling. He has made us all very happy indeed. Maria explains that Bob has just had a massage; he smells from peppermint oil which I discover when he spots me and crooks his finger toward me that I should come to stand where he is.
Bob kisses me hello, holds both of my hands and says clearly, "So what are we going to do now?"

The positive interaction Bob has experienced has organized him so that his speech is clearer, his gaze is steady, his mood is light and his willingness/ability to relate have improved. We go for a short walk outdoors where the weather is too chilly to be without his jacket. As we return to the building, Bob says, "I smell peppermint," but he has forgotten the massage.

He chooses to get his jacket and his cap to walk further outdoors and then asks to go "get something to eat, the three of us," although he has recently been very reluctant to get into the car or to be very far from his home. Steve invites Bob to enter the back seat of the car where he is already seated, holds Bob's hand to reassure him as I walk around the car to the driver's seat, and Bob successfully accompanies us to the restaurant and eats his breakfast-at-dinnerime meal.

Have we reduced our expectations so low that this day truly makes us happy? No, this day shows there can be joy even with Alzheimer's disease, both for the patient and for his family.

Saturday, December 22, 2012

100 words for the holiday weekend 12/23/12


The hustle and bustle of last minute holiday shoppers reminds me of New York, where there are crowds all the time, everywhere. In Arizona, even with the influx of our winter visitors, the feeling persists of wide open spaces with room for everyone. Generally, drivers don’t move on yellow lights and wait patiently for others to enter their lane, but not this weekend. Now, folks crowd the turning lanes, swerve around on the right and speed when they finally break through the traffic. I am not in a hurry, but something inside me wants to compete for that space, make the light.
There is excitement in the air, purposefulness and determination, activity which energizes me. I understand why the polls show that people spend money easily in this environment, more money than they intend or  budget. disregarding the need to pay the bills next month whether or not the payroll tax is extended. There is a kind of competition to purchase something before the store depletes its stock that feels like a score in a sports contest. For a brief moment, the speed of life perks up and we forget the tedium of the rest of the year. This kind of gifting is easy, we can do this for our families and friends. We are tired after a day full of shopping, but it's a good kind of tired.
It is much more difficult to be there for our friends who are ailing, for our elderly parents and spouses who demand our attention when we have the least amount of expendable energy. Caring for others on a day to day basis is tiring also and enervating. It is a depleting kind of tired.
So let's give ourselves  break, take advantage of family and friends who visit and ask for some private time without the person you care for all year long. Get a visitor to remain with your loved one and go with another family member or friend to do something you enjoy, whether it's shopping, pampering, dining out, attending a movie or something else you feel you've missed out on lately. You will feel better, your caregiving will improve and your visitors will feel they have really helped you out.

Aw shucks--December 22, 2012

Resveratrol--That's the ingredient found in red wine that has been shown to be effective in preventing heart disease. I liked that finding since I love a nice glass of wine with dinner when I go to a restaurant with friends or when I invite company home, which is rare these days.
The good news is that resveratrol has now been found to have preventive properties which help our brains and fight against developing Alzheimer's disease. As I read the NBCNews.com article the other day, I was disappointed to find that not all red wine is effective in its anti-aging properties and that in order to drink enough to get that benefit, the alcohol would defeat any positive effect.
Thus the recommendation is to get resveratrol from the food supplement store, in a pill and not from the red wine directly.

I have no more good excuse for indulging in my glass of wine, but I will continue to do so anyway AND get a resveratrol supplement. I am paying more and more attention to the food I ingest these days. I have avoided products containing aluminum for years, but I did not know that there is aluminum in the flu vaccine. The health food store has an alternative which is base-metal free. I am increasing my chicken, beans,egg and fish protein consumption to four ounces from three at each meal and adding fiber supplements, digestive enzymes and probiotics because, as we age, our bodies are less able to produce the digestive enzymes we need, given our normal American diet. The food that doesn't digest properly sits in our digestive tract, and we become constipated or expel the food products too quickly as diarrhea.

There is much research tying our consumption of sugar to dementia, some calling Alzheimer's disease Diabetes III. Our bodies store sugar as fat when we are not active enough to use all the fuel we produce, and none of us, well, very few of us, are active enough or eat small enough portions to metabolize the sugar we eat because it is so disguised. Sugar is in all corn products,like ketchup and salad dressing for example. So even if we say "no, thank you" to some of the holiday cakes, pies and cookies, the pounds pile on from the processed foods we eat.

Adiponectin is a hormone derived from belly fat. It too, effects the brain more of women than men. As we make our New Year Resolutions this week, let's decide to look at what we are eating from our brain's point of view. There are tasty choices we can make, but we will have to decide to spend more money on the food we purchase and on perhaps buying organic fruits and vegetables and non-genetically modified foods. Look for the label NGM.

Wednesday, December 19, 2012

Radio show Monday, December 24th TUNE IN


 
Phyllis W. Palm, PhD
Author of PUT THAT KNIFE AWAY

Will be a guest on the talk  radio show

Alzheimer’sspeaks.com

On Monday, December 24,th  2012 at 9am mountain time, 10 am central, 11 am EST.
The title of the conversation is
Shifting Caregiving from Crisis to Comfort

Tune in: www.blogtalkradio.com/alzheimersspeaks on your computer
Call in to comment 651-748-4714- share your comments and your feelings

Skype  alzspeaks join us on skype

Twitter 31/AlzSpks or tweet
In whatever way you choose
JOIN THE CONVERSATION   TUNE IN ON YOUR COMPUTER OR SMARTPHONE

Contact Dr. Palm at 646-265-8570, facebook at Phyllis W. Palm, PhD, blog at www.doctorphyl-heartofpalm.blogspot.com, website www.phylliswpalm.com, email at dr.palm@cox.net

Sunday, December 16, 2012

Candles 100 words for Sunday, December 16,2012


Candles, symbols of light and hope in our darkest hours, brighten my home as we celebrate the holiday the day after the horrendous life-taking of 20 children and six adult teachers in a local American school. My heart is grateful for the grandchildren who are here, safe and sound, as I grieve with all other parents and grandparents, uncles and aunts, cousins and friends of those who were so senselessly murdered with yet another assault rifle in the hands of a twenty-year old disturbed young man. Life is a gift; we never know how long we have. Let’s treasure it!
We never know what life is like for others; mostly we concentrate on our own and seldom do we take the time to appreciate what we have. Today is one of those times.

Saturday, December 15, 2012

Advice from a Tree December 15, 2012


 Advice from a Tree

This poem is quoted from the Alzheimer Association Newsletter for Alzheimer’s Support Group Facilitators., Desert Southwest Chapter, Central Arizona Region .   
Stand tall and proud, sink your roots into the earth,
 Be content with your natural beauty.
 Go out on a limb, drink plenty of water
 Remember your roots,
Enjoy the view.

 At this holiday time although we decorate our homes and prepare lavish entertainments for our out-of-town relatives and friends, we also need to stand tall and proud even if we are caring for a loved one whose skills have declined since the last visit. If we pretend to hide, if we try to “protect” ourselves from the “intrusion” and advice of our loved ones, we do so at a very high cost to ourselves and perhaps to our loved ones.

Adult children and grandchildren of all ages will respond to the behavior they witness and they will perhaps withdraw if they sense the parent is less engaged than before. If visits decline, the caregiver’s life is further narrowed as well as our loved one’s life. Parents often feel that children have no need to know “personal” information. When we become caregivers that role shifts and those difficult conversations need to occur. If your roots are established, your wishes will be too.

Go out on a limb, test the waters, see if your parents or other older relatives will listen to suggestions to obtain assistance with skills of daily living, ask if they have wills and powers of attorney and medical proxies in place in accordance with the state in which they live, if it is different from your own where this paperwork may well have been written in the past.

Remember your roots, tell old stories, keep family traditions alive and enjoy the visits.

                       

                       

Sunday, December 9, 2012

Passion 100 words for Sunday, December 9, 2012


  Verdi’s opera Un Ballo in Maschera vividly portrays  differences between men and women in a  love triangle. King Gustavo feels love in his heart for his best friend’s wife, so he acts on his feelings and declares himself to her, regardless of the risk or potential cost involved. Amelia asks instead for a witch’s potion to cure her of her feelings for the king, desiring to remain a loyal and protected wife. Many people long for new passions and become bored with their ordinary lives. Is this a morality play meant to show the tragic outcomes of following one’s dream?
When we are caregivers for our beloved spouses, no  path leads to anything but tragic outcomes. If we feel moved to declare our affection we are often misunderstood or even ignored; we strive to remain loyal, loving and kind, remembering for both of us the fondness and love in the past. At holiday time, we decorate the house, prepare traditional food and attempt to feel as if everything is normal, but of course it can’t be. One partner is a shell of what he or she used to be. We go through the motions, we put on a good show, but there is a hollowness inside where true love once resided.
How do we fulfill ourselves when we are providing good feelings and activities for our loved one if these activities are no longer rewarding for us? What do we do with our feelings of disappointment which are often present at holiday time, even without Alzheimer’s disease getting in the way? Depression often accompanies the holidays as we see revelers and carolers on television celebrating and gifting each other when we feel alone. How do we keep these feelings from turning into anger directed at our families and friends whose attempts at helping us are so well-meaning?
It is definitely true at holiday time that we need to reach out to someone who understands what we are experiencing, true friends, family members who "get" what we are feeling and especially to an Alzheimer support group, preferably in person, but also available online and in chat rooms where we can get immediate feedback from a peer. Relating our stories with other caregivers helps them to cope as we are supported in knowing we are not alone. We have all been there; we know how difficult our lives are right now. Sharing our feelings lightens us, we feel less guilty and most of all we feel supported, cared for, taken care of, by others who are caregivers themselves.
And what about our dreams and passions that have been put on hold since our partners developed Alzheimer's or other life-limiting, personality-stealing illness? Figure out a plan that will permit you to pursue your old dream or forge a new one. Find a companion to stay with your loved one, budget your funds if necessary to get yourself some free time to learn to study to DO something for yourself!
 

Tuesday, December 4, 2012

Alzheimersspeaks.com--a new resource 12/4/2012

I spoke with a charming woman on the telephone today. Her name is Lori La Bey and she is the voice on the website and on an online radio program on which she has invited me to be a guest, discussing my book Put That Knife Away.
She asked me for several talking points and the following are what I sent her:
Talking points
1. Reasons for writing Put That Knife Away
a. writing my feelings on paper helped me sort them out and taught me a new skill
b. sorting out difficulties with the medical diagnoses and medications helped me to see how complicated it is to have an illness that no one wants to label and for which no one has a cure.
c.I felt so alone with my husband's personality challenges, I thought I could help other caregivers not to feel as alone as I felt.
d. I thought I could help other adult children look more carefully at their parents and assist more if they see one is clearly covering for and protecting the other from scrutiny.
e. I also thought that the general public could become more sympathetic to the cause of Alzheimer's research and donate money as well as pressure the government to do more to find a cure.
2. I am on a bandwagon every chance I get to suggest that folks get their financial and legal paperwork in order, before they are faced with this issue of one partner or parent becoming incompetent. Especially since our retirees often live in different states from the one in which they may have originally signed wills, powers of attorney, medical proxies,etc. It is awful that widows whose names had not been on their primary home mortgages now face foreclosure because their names were not on the documents.Different states have differing laws regarding elder care issues. Please check the laws out in your state and have these difficult conversations with your spouses and children.
3. Put That Knife Away tells my story and the story of others I met in support groups in New York and in Arizona. It shows that support groups are important for caregivers to show you are not alone with this huge problem. My book has been called " a support group within two covers."
4. Many caregivers die before the person for whom they are caring. We deny ourselves the care we need for physical as well as mental problems. Who would then care for our loved ones? In my book, I add a chapter on shopping for purses in Chinatown to show that my friend and I really needed a morning off. Caregivers need to care for themselves and family members need to recognize this issue. The old adage that the spouse is there and is managing is not enough. Adult children need to be emotionally supportive even if the spouse is part of a second marriage.
5. Even with a loved one having Alzheimer's disease, there are still many years of pleasure and purpose that spouses, parents and adult children can provide and enjoy together. See how Bob thrived when we moved into a larger apartment and he had his sewing machine back and he replaced the quarter-round molding on the floors and refinished the doors and the brass fittings.
If you think of other subjects or ideas for this broadcast which will take place on December 24th in the morning, please let me know.

Sunday, December 2, 2012

100 Words for 12/2/12 Balance


 
When I am emotionally off-kilter, at first I do not know what is wrong. After gaining five pounds, I begin to realize there’s an issue here. I’ve been stressing about developing Alzheimer’s disease myself and that’s a big deal. Bob is much less able to communicate with me, which hurts a lot. I know that. I’ve been working on the Holocaust memoir of my grandparents, grappling with the torment of their seven years of walking-- hiding and hungry. I need to cope better and relieve more of this stress than Zumba provides. Do I need the structure of Weight Watchers?

I do need to finish writing this part of the book and turn to more pleasant pursuits of the grandparents’ successful transition to life in America with their children and grandchildren all safe, but I know the next book which will be about my husband’s  and my experience with the senior care industry will also be stressful to write well. No one can remove the stressors in life; my retired friends seem to manufacture them. Some stress over their golf score, others micro-manage their stock portfolios making changes with each political shift of the wind. Some stress about their families, worried about potential outcomes they can neither predict nor change.
I believe it is all about balance which of course is not original; the Book of Ecclesiastes said it first:

There is a time for everything, and a season for every activity under the heavens:
a time to be born and a time to die, a time to plant and a time to uproot, a time to kill and a time to heal, a time to tear down and a time to build, a time to weep and a time to laugh, a time to mourn and a time to dance, a time to scatter stones and a time to gather them, a time to embrace and a time to refrain from embracing,
 a time to search and a time to give up, a time to keep and a time to throw away, a time to tear and a time to mend, a time to be silent and a time to speak, a time to love and a time to hate, a time for war and a time for peace.

Let’s try in this hectic holiday month to seek balance for ourselves and peace in our minds and hearts.

 

Wednesday, November 28, 2012

Detecting Alzheimer's disease November 28, 2012


This blog is quoted from part of The NYTimes on November 16, 2012  article "For Alzheimer’s, Detection Advances Outpace Treatment Options" which indicates that the new scan which bacame available in June for testing your brain for amyloids and plaques presents patients and their families with more questions than answers and a positive test result may prevent patients from obtaining long term care insurance.

There are already more than 300 hospitals and imaging centers, located in most major metropolitan areas, that are ready to perform the scans, which are not yet covered by Medicare and cost thousands of dollars.

The scans show plaques in the brain — barnaclelike clumps of protein, beta amyloid — that, together with dementia, are the defining feature of Alzheimer’s disease. Those who have dementia but do not have excessive plaques do not have Alzheimer’s. It is no longer necessary to wait until the person dies and has an autopsy to learn if the brain was studded with plaques.

So it is tempting to get the scan if you feel your loved one is forgetting more than is typical; there is anticipation of relief if the scan is negative, but what if it is positive? There is no treatment available, clinical trials may have significant side effects and the vague fears are then reality. There is nothing more to do, than to get one's affairs in order and prepare to watch our loved one deteriorate slowly.

Scientifically, this is good news if we are sure that the hypothesis is correct. How many scans have been done on non-demented people to show how much plaque is normal? How much of our retirement income or savings should we spend to find out something we can do nothing about? Is it better to wait until the treatment science catches up with the detection science before jumping on the scan bandwagon?

Fear of Alzheimer's disease is the number one fear of illness now in America, overshadowing heart disease and cancer. Let's not let this fear tempt us into rash expensive decisions which could make our lives and those of our loved ones worse, not better.

Sunday, November 25, 2012

Holiday Stress- Sunday November 25,2012


I struggled mightily this year about bringing my husband from the care facility to our home for the holiday afternoon as we had such a pleasant visit the day before when we sat with him for an hour in the afternoon and ate at the Village Inn. He did not appear agitated and was so glad to see both me and my son Steve. The decision was reached on the basis of stress, both his and mine. What would Bob do when the guys were watching football? What would he do while I was cooking and serving? How would he relate to guests, to being in the house? Would he want to return home during dinner?

Bob’s comfort level these days depends a lot on constant individual attention to his needs. Could I provide that attention at a dinner party? I would have changed his routine and added stress to Bob’s day and to mine, so he ate turkey dinner with his staff and we visited the day after. He didn’t know but I heard the care facility went out of its way to provide an ample and delicious festive meal.

Hosting Thanksgiving dinner felt satisfying from the menu design to the bright red flowering amaryllis I placed as the centerpiece on the table. Permitting three friends plus my family to bring side dishes help serve and clean made for a stress-free meal. I served coffee in my mother’s fragile china cups, used my husband’s annotated recipes and made his Famous Thanksgiving Jell-O mold which keeps him in our hearts. I am grateful for and thoroughly enjoy the family and friends I am privileged to have with me without feeling devastated by the sadness of the losses each new separation brings.

Thursday, November 22, 2012

Risk Factors We CAN Change 11/22/2012

Happy Thanksgiving to you all. As we gorge ourselves on delicious traditional and experimental foods this year, let's decide to make a few lifestyle changes to help ourselves avoid Alzheimer's disease if possible. Here is the remainer of the article, quoted from The Huffington Post Healthy Living.

"When I am asked in my clinical practice about Alzheimer's prevention, I recommend attending to reversible risk factors for other conditions that impact negatively on the brain, particularly stroke and heart disease," adds Dr. Relkin. "After addressing things such as high blood pressure, cholesterol and diabetes, the most actionable advice I can give is to make lifestyle changes, such as regular physical exercise, weight control and eating a heart-healthy diet."
Reduce your risk of stroke: The first and most important thing you can do is reduce your risk of stroke. Stroke and Alzheimer's share many risk factors and the likelihood of dementia is doubled after a stroke. While it's not clear exactly why, considerable evidence (some of it gathered by the unique Nun Study) shows that two brains with an identical burden of AD pathology (plaques and tangles) can function quite differently. The non-stroke affected brain is more likely to function well, and the stroke-affected brain is more likely to develop dementia, including those affected by so-called "silent strokes."
In lifestyle terms, this means being a fanatic about controlling your blood pressure and atherosclerosis (hardening of the arteries), as well as high cholesterol and diabetes. Quit smoking. Read more from me about stroke prevention here.
Avoid concussion and head trauma: From research on professional football players to World War II vets and boxers, the evidence is mounting that traumatic brain injury has lifelong consequences, one of which is a marked increase in Alzheimer's, as well as Parkinson's disease, depression and suicide risk. The worse the injury, the higher the risk. Professional football players' risk of death from Alzheimer's or ALS appears to be increased almost four times.
Treat depression: Suffering from depression in midlife, and especially later in life is associated with increased Alzheimer's risk. Highly effective treatment is available for depression and should be pursued. (See my advice in depression here.)
Increase your activity and exercise: You don't have to do a triathlon, but the more you move, the better your vascular health, which is directly related to many types of dementia. A recent study even suggested that jogging five times a week normalized the otherwise much elevated risk of people with two copies of the gene variant ApoE-4.

Control your diabetes: High glucose levels, including after meals, can double your lifetime risk for developing Alzheimer's.
Keep your mind alive: It's too much to say that doing crosswords and playing cards alone can stave off Alzheimer's, but there is a correlation between active brain engagement and reduced risk. A recent study suggested that lots of mental activity delays the onset of cognitive decline (although decline was also faster once it began). But if you only have time or energy for physical or cognitive exercise, it has recently been shown that, although both are good, physical exercise is better at keeping the brain healthiest.
Sleep better: Sleep apnea has long been recognized as a cause of decreased daytime alertness, but recent studies suggest it may also increase the risk of dementia. For the obese, weight loss alone can sometimes help to eliminate sleep apnea, but in many cases other medical interventions are required.
Lots of things in life are beyond our control, but we should all take heart from what we can do. I urge you to take a walk and eat a healthy snack to celebrate... before it's too late.

Tuesday, November 20, 2012

Alzheimer's Risk Factors November 20, 2012

Richard Blesdine, MD, a geriatic physician has written a clear article on the risk factors for developing Alzheimer's disease. He has divided them by type-those we can change will appear in this column on Thursday


AD risk factors that you cannot change
There are two kinds of risk factors: those you can't control and those you can. Here are some risks factors that you should be aware of, even if you can't change them.
Family History: Having one parent with AD doubles your risk; two parents with AD puts you at five times greater risk.
Age: About 5 percent of Alzheimer's patients have early onset disease, but the vast majority of cases are late-onset. Seventy-four is the most common age for detection. Dementia is never an inevitable part of aging, but getting older is a risk factor. The number of Alzheimer's cases doubles every five years after age 65 and AD risk hits about 50 percent after age 85.
Genetics: People with two copies of the apolipoprotein (ApoE4) gene appear to be at about 10 to 15 times greater risk, and one copy triples the risk. That said, having one or even two copies of the gene does not mean you will definitely develop Alzheimer's. For this reason, most physicians do not recommend taking the blood test for ApoE4, except in research settings. (A different variant of the same gene, ApoE2, provides some protection against the disease.) New genes that increase risk continue to be identified, holding out promise for greater understanding of basic mechanisms, and, therefore, hope for prevention.
Multiple mutations of a number of genes are the most common cause of early-onset AD (before age 60). Members of these unfortunate families with such mutations definitely will develop AD.
On the bright side, earlier this year researchers reported an exciting discovery: a rare gene mutation that appears to offer strong protection against Alzheimer's, even for people at high genetic risk.
Being a woman: More women than men develop Alzheimer's Disease. Although women outlive men, and age is a powerful risk factor, the weight of evidence suggests that women are still at slightly higher risk than men. And there is no doubt that women bear the major burden of caregiving for persons of both sexes with AD.
Down's Syndrome: About half of all people with Down's Syndrome will develop symptoms of Alzheimer's by their 50s, but almost all at autopsy show the typical pathologic features of AD.
Risk factors that you can change
The lifestyle changes listed below are not revolutionary, except in this respect: You may never have realized they can cut your risk of dementia. And authorities say that every little bit helps.
"Alzheimer's disease whittles away cognitive reserve, which is the brain's ability to tolerate damage without loss of thinking abilities. Anything that can be done to avoid brain damage and/or increase cognitive reserve can potentially delay dementia symptoms," says Norman Relkin, M.D., Ph.D., founding director of the Weill Cornell Memory Disorders Program and a member of the Board of Directors of the American Federation for Aging Research.
I will quote the rest of this article on Thursday.

Sunday, November 18, 2012

Violence 100 Words for Sunday, 11/18/12


I saw the movie Lincoln last  evening; two venues, four showings today, 2400 people, in the Mesa theater alone. Our local loyal viewers clapped at the ending, proud that we abolished slavery. I hope my neighbors also saw how difficult it was to secure the majority needed to amend the Constitution, how fairness and equality are the mainstays of our democracy and how compromise, even coercion, among people of differing views can accomplish small pieces of a large goal; it took another hundred years for blacks to obtain their civil rights in our country. Now we struggle for LGBT equality!
It is all too human to resist change; even more human to collect in groups with like-minded others to the exclusion of others which we often feel protects "us" even while it demeans "them." We try to substitute sports team allegiance for clan behavior, hopefully stopping short of the violence that has been known to erupt in soccer match playoffs. We identify with the sports team, rooting for them when they win and often demeaning them when they lose. But often sport team alliance is not sufficient; we resort to the tension between groups that flares into violence and threatens to involve more and more groups who identify and align with one side or the other.
We pick sides, deciding who we feel is the aggressor and who the underdog, but much like sibling squables in which the parent does not recognize that it is often the sweet girl or the younger sibling who instiogates the quarrel, many parents blame the older or the stronger or the one whom the parent perceives  as smarter, ignoring the facts of the quarrel. Most times, home based arguments end with both children being quarantined for a time in separate spaces until the tension subsides and either the children work out a solution or the parents exert their authority to resolve the dispute.
Bullying is to be fought against, self-defense is to be encouraged, resorting to violence is the worst of all methods but if fighting is needed to stop aggression, at least let the participants work out a cease-fire and talk out their issues without senseless escalation which can happen when parents choose sides between their children, when schools and ever larger forces of authority involve themselves in the quarrel which grows to a battle and to a war.

Tuesday, November 13, 2012

Generations November 13, 2012

11/12/12 celebrated a private event for my family as well as the national event of Veteran's Day. We attended a local parade where we watched my nine year-old Webelo scout march with his troop. We saw the banner which read "Never will one group of veterans forget another" as we did with the Vietnam War. The number of World War II veterans is becoming very small with each being driven in a car along the route.
In the afternoon we took our own Korean War veteran out to dinner. Grant helped Grandpa Bob into the car and fastened his seat belt. He sat across from Grandpa and made conversation, was kind and considerate and later he said solemnly, "I'm a scout. That's what scouts do."
The family event was the one hundred year anniversary of my mother's birth. As we shared anecdotes remembered from our relationships with her, I realized again how important it is to build family memories. My children were lucky to grow up living nearby to their grandparents; they have many warm memories to share with the next generation who knew her less as my older grandson was just a baby when his "Grandma Cookie" died. I am now fortunate to live near my two grandsons. What will they remember of me?

Sunday, November 11, 2012

Veteran's Day November 11, 2012


 
I saw a new interpretation of Shakespeare's play, in opera form, at the movie theater yesterday.The Tempest  portrays the hero Prospero as a rational magician, who conjures up a storm to get revenge against the plotters who removed him from the powerful Dukedom of Milan. This Prospero comes to understand that love supersedes the power of his magic. While Prospero currently battles with the loss of his daughter to maturity and marriage, he also forgives and redeems those who fought against him years ago. There is a parallel to my life, because I struggle to forgive my husband, to whom, by forgetting, I become less important.

It is up to me to learn how to let go, to reduce my expectations of my husband who has Alzheimer’s disease, even lower. Friday, Arbor Rose held a lovely tribute to the 44 veterans who attend their day club and residences , with a program that listed each person’s name and presented a flag, a handshake and a picture taken with the fully uniformed senior care director who is a Major in the Air Force. We sang patriotic songs and ate cake that was baked red, white and blue. Bob did not enjoy sitting in the hot sun among so many people, but he sat between my son Steve and me, holding his program, placing his flag in his shirt pocket and saying again and again that he did not recognize me.

However, as I stood next to the photographer who took his picture, he said, “That’s my wife,” and when we finally returned to his quiet room, he said, “You’ve come back to yourself.” We are all trying so hard to maintain that connection but slowly, he is slipping away. And many of these other 43 heroes who fought to preserve our freedoms in the Second World War, the Korean Conflict, Vietnam, the Gulf Wars and the War on Terror are struggling to maintain their own identity. We honor them, we tell their war stories for them,  we celebrate whenever we can with love and respect for them, their families and for the smiling  and sensitive people who care for them now.

Thursday, November 8, 2012

Normal Cognitive functioning November 8,2012

There are already test results filtering from the study in the US of the extensive Colombian family who have the Alzheimer's gene. The most recent study indicates the teams are finding Alzheimer's in people in their 20's, who have normal cognitive skills and no idea they are ill. Their brains show less grey matter than others' and their spinal fluid contains more beta amyloid plaques.
What does this mean? First, medications which prevent the increased production of beta amyloid plaques need to be found and second, these potential medications need to be administered before the brain damage takes place.
The telephone message when I phoned the Alzheimer Institute this week says thay they are looking to find a cure for Alzheimer's disease "without losing a generation." Ouch, that generation includes me and my children.
When we are diagnosed today, we have already lost 20% of our brain function. The medications now available delay the symptoms; the new medications being tested only work on very early diagnosed patients and still only delay the progress of the disease. There is nothing yet to halt the disease or to prevent it.
So what do all adults need to do? Plan financially for the future, plan legally for the future. It will not be sufficient to protect our families from Type A personality heart attack early death (although this advice could hasten that outcome!) Pay attention to your savings and to your investments making decisions that include the possibility of diminished cognitive skill in the future. I know of several families who are in dire financial straits because  one member of the family made disastrous investment choices when his decision-making skills and judgment were diminished by disease.
One family lost $300,000. when a non-diagnosed early stage Alzheimer spouse was embezzeled by a computer scam. Another spouse started gambling and lost the family's life savings before he was diagnosed with Alzheimer's disease.

Alzheimer's is not only a memory-loss disease. Financial decisions need to be made by more than one family member, preferably in consultation with a reputable financial advisor.
"If you see something, say something," a sign in the NY subway, warns us to guard against terrorism; it is also applicable here. Have yourself or your family member tested if you notice signs of disruptive memory loss, increased dependence or irritation, sleep disturbance or non-intentional significant weight loss. We need to change the culture to one of prevention and protection; we need to erase the stigma of reduced cognitive ability.

Sunday, November 4, 2012

Tension November 4, 2012


The drama, tension and conflict are interspersed with humorous one-liners that invite the audience to let out its collective breath by giggling at something absurd, but only momentarily. I sit silently attentive for more than two hours as the story I already know plays itself out. Is it the music, the fast pace of the action, the simultaneous superimposition of two scenes on two continents or is it our collective desire to be held in the suspense, to escape from the problems of our lives and dive into the more exciting, life-risking adventure of patriotic countrymen caught in harm’s way?
This is really a description of how I felt as I watched ARGO, but it also describes how I felt glued to CNN before, during and in the aftermath of Superstorm Sandy. Instead of feeling glad I am safe in Arizona, I wanted to be in New York, experiencing the storm, which sounds to rational me to be an absurd desire. But if I were there, I would know how my friends are faring, I could offer assistance if needed. Here I am safe, but I feel separate from the action. Gladly everyone with whom I've spoken is managing, with or without power, sleeping in the lobby of a building instead of walking up 14 floors, having a small generator blow up because too much use was attempted, enjoying the free bus rides and generally feeling upbeat about the city. Even folks in New Jersey feel that the repairs will provide jobs for many people they know, although we are all saddened by the loss of so many memories at the Jersey shore.
I wish you all the best as you recover from this huge trauma, my thoughts and prayers are with you.

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
Print
Font Size:
Default font size
Larger font size
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

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.