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Saturday, December 31, 2011

100 words for Sunday, January 1, 2012

As I write on the last day of the year, I check on my hopes and dreams for the past half year, plans I made at the Jewish New Year, in September. Limiting myself to my checklist permits me to feel a sense of gratitude for the blessing of good friends and hard work done well. I signed the papers to move my husband to a higher level of care, beginning February first. My book is ready to be published, probably by Monday. My knee has healed; the medical and dental procedures I promised to do have been successfully accomplished.
It will take more than 100 words to detail what I am grateful for these past six months and my hopes and dreams for the next six months. A year feels too long to plan for.I love the reaction of you, my blogging public, to these posts which give me a way to communicate with so many of you in a public way that somehow feels intimate.
My first goal for the new year will be to support my husband as he transitions to the new environment. I will work hard to speak to groups to inform folks about Alzheimer's disease as well as to promote my book, Put That Knife Away.
On a personal level,I will work to strengthen my body, attempting to return to pre-knee strain , but slowly. I will continue to write these blogs, my journal of my husband's illness and chapters for my new book, the one about my grandparents' survival during the time of the Holocaust.

Tuesday, December 27, 2011

Tuesday, December 27, 2011

I am truly grateful that I am able to recognize and enjoy moments of peace when they present themselves, as unfortunately but probably inevitably those times are merely moments--and don't last.
My reality moment arrived Monday morning, at 4:25a.m. with a telephone call from the care facility. Marsha was informing me that she had ordered the paramedics who had just left with my husband, to take him to the emergency room of the nearby hospital. She reported that Bob had been asleep when she checked and then twenty minutes later as she was making her rounds, she found him walking in the hallway with blood on his hand and on his shirt. Assuming he had fallen out of bed and had hit his head on his nightstand, she followed procedure and asked me to phone the hospital for further instructions.
The hospital sedated him so they could perform a CT scan of his head, then the doctor placed ten stitches in Bob's ear and dressed him for a Vincent Van Gogh look-alike contest. He could not tell the admitting personnel his name, but he said, "Hi dear," when he saw me.The doctor reported his mood and demeanor softened upon my arrival, making the anesthetizing injections and the stitch placement easier for everyone, but he still cried, "Get me out of here," several times and climbed off the gurney. My poor dear isn't aware of any moments of peace. The only wish he has I cannot fulfill--to spend every waking and sleeping moment next to me.

Saturday, December 24, 2011

100 words for Sunday, December 25th


It’s the day before Christmas and I have a choice, holiday music or quiet.

Having neither stereo nor i-pod, not trusting my voice, I sigh.

Chanukah week is concurrent this year; the computer provides Jewish musical cheer.

 From u-tube to radio stations far away, the strains of songs from long ago play,

But lo and behold --this, too, is not what I want to hear.

I’m really enjoying the silence today and actually realizing why.

No reason to fill up on manufactured cheer

No cobwebs, no ruminating. My head is clear

Merry Christmas to all and a Happy New Year


Tuesday, December 20, 2011

Tuesday's Science News

There is an interview with an internist from Nova Scotia in The New Old Age postings column in today's NY Times Science section. He speaks of the language we use to speak of end of life, but what struck me most was the use of language that suggests the patient is to blame. For example, "Your mother failed to respond to treatment." He suggests instead, "Our treatment is not working." 
I am so tired of people who blame the child or the demented person when an accident happens or a planned event is spoiled. Hooray for Dr. Stephen Workman who shows us how important it is to speak clearly, honestly and without blame. Dr. Workman also does not like the phrase "We're switching to comfort care." What kind of care was the person receiving before? Hurtful care?
I learned yesterday the language for the levels of care in a residential facility for the infirm--supervisory care, personal care and direct care.In the first level of care, the person is independent; able to attend to his/her own needs for dressing, toileting, feeding and ambulation. In the second level, the person needs some direction or assistance with these skills of  daily living. In the third level, the person needs direct care in these areas. No longer will a staff member tell me "Bob is putting on soiled clothing" or "Bob is getting up from the table during his meals." Only the clothing he is wearing will be available to him and he will be spoken to, and asked what the matter is, that he had to leave the table.
In my years of helping parents develop the skills to raise their children successfully, it was always important, too, to help the parent use language to see the child as wanting to cooperate and to look for the reason Johnny was "always into everything" or "always misbehaving." Some parents believe their two year-old child "has the devil in him" or is purposely misbehaving to annoy the parents.Quite often these parents were very uncomfortable when Johnny interacted quietly and in a goal-directed manner in my office.

Sunday, December 18, 2011

100 words for Sunday


A Sunday without 100 words? I cannot let that be, but I feel so empty, drained, spent, without my usual energy. I thought of these sentences as I awoke today and just now connect them to the procedure I endured on Friday. Once again, against my better judgment I did as bid, putting myself in a degrading, vulnerable, deprived position, alone with insufficient guidance on how to make this inconvenient preparation less onerous. Now I know, of course, and I presented my findings to the staff at the endoscopy and colonoscopy center who merely said, “Thank you for your input.”
I guess the rainy day didn't help my mood this morning, neither did the fact that Skype decided not to work, and I can't use my tv to run Netflix, something about the Internet connection. But I recovered after reading the Sunday paper; I have a gluten-free bread baking in my new bread machine, my grandson will fix the computer problems when he returns from an off-road bicycle ride and Steve and I have just returned from visiting my husband in the assisted living community.

I am reading a sad but well-written book about another wife caring for her husband with dementia. As a poet and a college professor, she is able to share her feelings which are so similar to mine. She also lives in New York several blocks from our old apartment near the Hudson River. The author is Rachel Hadas and the book is titled Strange Relation.
The proof copy of my book will be delivered by Wednesday; I can hardly wait, but I need Skype to be working so I can share the experience with my cousin Nora in Switzerland as well as with Linda who helped design the cover. We will each open a split of champagne and toast our accomplishment!

Tuesday, December 13, 2011

Uploaded

"Congratulations," said the email from createspace.com,"You have satisfied all the submission requirements for your cover and for the interior of your book. Please go to the site and order a proof copy."
With my cousin Nora working overtime in Arosa, Switzerland since there hasn't been enough snow to ski until today, and my daughter Linda consulting and designing the cover with her on Skpe and email, we accomplished what I had planned as a three month goal in less than a month.
I now have a new phase of publishing to learn--marketing and distribution. Within six weeks, you will be able to purchase a copy on amazon, downloadable to Kindle or order a trade paperback. More outlets to come as I figure out how.

There were many serious topics discused in today's NY Times Science section, about sexual abuse, treating older very ill patients, the scarcity of many important drugs, but the one I choose to mention here is a small article from the Postings, the NYTimes blog, entitled The New Old Age. It reminds the female reader who is past age 65, that annual Pap smears may no longer be necessary, if she is in a monogamous relationship( or not sexually active,) and has had a series of negative Pap smears prior to age 65.Although my internist asks each year if I will have a Pap smear done and shakes her head when I indicate that my gyn has excused me from this one test, I have successfully avoided this procedure for the past 5 years. My physician wouldn't let me forego a routine colonoscopy, however, scheduled for Friday, as it has been ten years since the last one. We must all be cognizant of our own needs and our bodies, keep up with the research and get regular checkups, annoying as this one surely is.

Wednesday, December 7, 2011

Company Time

Although I so understand the columnist Maureen Dowd who writes a column in the New York Times today revering silence, as in the new silent film "The Artist," I really DO appreciate the visit this week of my husband's brother, who flew "in that big thing" from Florida to visit. Irving is a very emotional man, who last saw his brother in May, 2010 when Bob had a psychotic break requiring a visit from the local Mesa police officers. As upsetting as that visit was, the change in the past eighteen months overwhelms Irving.
"Last time, Bob was all angry, wanting to sell the house, but he talked, he walked regular, up to the sales office with me. And now, he shuffles, he can't finish a sentence ..he's my last full relative, you know. He's my brother." And his eyes well up, his face turns beet-red, he sobs and his shoulders slump; I fear he might have a stroke. After all, he is 89 years old.
Monday evening, Bob did not recognize his brother, but said when they met, "I have a brother." Steve brought Irving Monday evening, as I had a class. When I brought him on Tuesday morning, Bob did not recognize me either.
"You're my nurse," he said."Go away," he continued, "You're confusing my brain."
However, when we returned later in the day, Bob called me by name and told me how wonderful it is that his brother flew here to see him.This morning again, he was happy to see both of us. He played a version of pool with Irving that Steve invented. The helper places the ball near the pocket directly across from where Bob stands holding the cuestick. The white ball is placed in front of Bob and invariably he can shoot the ball gently enough and correctly into the pocket. He is usually willing to try all the balls until he misses and the game is over.
I hate this disease and the swiftness of its current progression; I am so sad at the toll this illness takes on the family members of the person with the disease. It is so hard to understand and it seems so unfair.

Sunday, December 4, 2011

100 words for Sunday, December 4 , 2011


My friend Adele says I’ve been spending my week catching fleas; the period that floats outside the quotation mark, the comma before the word “and” and several –ed  endings that need to be –s. My cousin Nora has me highlighting all these corrections and she will input them when I’ve finished. Meanwhile she and my daughter Linda have been designing covers, one nicer than the next, to illustrate my book. My attorney has promised she will read the book this weekend on her computer to make sure I have not offended anyone enough to merit a lawsuit. It’s almost done!
There is much to be said about having an overriding passion to get a work accomplished, to see the realization of a dream. There is the excitement and the anticipation -I want to hold the finished book in my hand-and the enormous sadness I have each chapter I re-read. I wish I didn't have this as my first book. I wish I could have been happily writing about my grandparents successful escape from the second world war, anything but losing my dear, sweet husband to Alzheimer's disease.
Update on the home. I've taken the  name of his residence out of the book, just in case I do not like the promised changes, but for now, I have signed an updated (meaning twice as expensive) services package which will provide more hands-on care. He is clean and neat whenever I arrive; he is accepting the help that is offered and he is complying with requests to take his medications. The staff really feels affection for him and he downgraded me yesterday, by saying, "You really are the best of them all."

Tuesday, November 29, 2011

Tuesday science news

Today's discussion begins with an article entitled Willpower: It's in Your Head in a column entitled Grey Matter by Greg Walton and Carol Dweck in Sunday's NY Times. The controversy is between the biologists and nutritionists who believe that the hypothalamus in the brain controls our ability to lose weight, for example, and the psychologists who proclaim that experiments they conducted prove that people who do not believe that willpower is limited do better on difficult tasks.
On the one hand we need glucose to function well and on the other hand, we need to know that we can manage our own behavior even if that includes measured doses of sugar to keep us going.
Of course the both sides are correct.The problem arises when we need to maintain a difficult behavior which needs constant monitoring, such as counting calories, in the face of other events which are stressors. The stressful situation calls for more glucose in order to manage the stress and there goes the diet! We women all recognize the connection between PMS and chocolate.
The trick is to recognize the stressors, learn to de-stress by exercise, meditation, conversation and by problem-solving techniques, to get back on track with the difficult task which needs monitoring without giving up or feeling depleted.
As you can tell, I have been feeling stressed this past two weeks; I have gained three pounds of hard lost weight, have intestinal problems despite strict adherence to the gluten and dairy-free diet.Some of the stress is good stress; the book is almost ready to have the"publish" button pushed.Some of the stress is caregiver stress, which I am planning to solve by scheduling a meeting with the supervisory staff at the assisted living center. I also have a gastroenterology appointment tomorrow to deal with the biology.

Sunday, November 27, 2011

Difficult Decisions

 We cannot all be decision makers. The Occupy movement has to have leaders. I fear they keep the names of their leaders secret so that no one person can be targeted by the corporate financial opposition, blamed or even imprisoned or murdered.Even of course, the membership would blame the announced leader for decisions they oppose.
In a family, the parents have to be the leaders; they can elicit suggestions from their children or their parents and from outside sources, but the decisions for the welfare of the family must be made by the parents.
In a residential treatment center for disturbed adolescent girls where I served as a psychologist-consultant, we had a team who discussed the issues that arose, but the decisions were finally made by the director and the assistant director who lived on-site until the out-of-state governing body "went corporate" and reduced the power of our local team to act on issues effecting "our" center.
The assisted living community where my husband has been a resident for the past eight months is owned by a corporation which owns over 500 of these facilities, treating a range of populations with varied degrees of need for service. They have policies and spreadsheets and fees for service which increase as the skills of the resident decrease.The sales agent explained all of this to me before I decided to place my husband when the psychiatric hospital said he needed to be in a safe, secure environment.
But now that my husband needs additional services I understand they will not hire another worker to provide these services. The burden will fall on the existing workers, who are stretched to their maximum already. I have been advised the community "could" transfer my husband to their memory care facility a half hour further away when and if they feel they are not able to meet his needs. On the other hand, they say that moving a person with dementia will shorten his life, as an adjustment is difficult if not impossible for him to assimilate.
There is an assisted living community across the street from where we are now that is owned in part by the on-site director who is a registered nurse. They are constructing a new building next door, which will house a 19 bed memory-care only unit which will provide the hands-on care my husband now needs.I have been eliciting suggestions and opinions from my family and friends. A move will be hard as my husband still wants to be in a place where we two could sleep together; he will fight any alternate solution. Do I wait for the time when he no longer will recognize me or care whether he can "hold you and touch you whenever I want" or do I move him in February when the building opens so that he has the self-care skills help that he needs already?

Wednesday, November 23, 2011

Tuesday Science blended in with Thanksgiving

Robert A Emmons of UC Davis and others are conducting experiments in gratitude, the results of which indicate that the consequence of giving thanks has been linked not only to better sleep, less anxiety and depression, but also to kinder behavior toward others. Feeling grateful makes people less likely to turn aggressive when provoked. As reported in Tuesday’s NY Times Science Times, Dr. Emmons and his team recommend beginning with “gratitude light.” They ask folks to write down, just a sentence, about five things they are grateful for. After writing this mini-journal once each week for two months there were significant effects compared with a control group. People were more optimistic and felt happier, reporting fewer physical problems and working out more. You can read more in Dr. Emmons’s book, Thanks which details his research on gratitude.

Gratitude is not indebtedness. People who were helped in another experiment were more likely to help others; not necessarily paying back the one who helped them .Gratitude promotes good karma. Try it out. We may enjoy this holiday more by doing one small unobtrusive thoughtful or generous thing tomorrow for each of our dinner companions. Let’s express admiration for someone’s skills or talents, say thank you if someone smiles or does a kind thing for us and truly listen to what another person is saying. This information is not from me; it is from research.  Gratitude is the emotion of friendship. “Gratitude is what happens when someone does something that causes you to realize that you matter more to that person than you thought you did.”
This week I am truly grateful for my friend Martha who hemmed my hiking pants for me, for my friend Phyllis who accompanied me to visit Bob yesterday to help me decide if he is receiving the level of care he needs, to my cousin Nora who is formatting my book once again, this time for publication, to the folks at the United Methodist Church of Gilbert Alzheimer Support group for accepting me as their leader and for my daughter Linda who is modifying turkey dinner to accommodate my gluten and dairy-free diet. Happy Thanksgiving.

Sunday, November 20, 2011

100 words for Sunday, November 20, 2011

I’ve begun my self-publishing journey; at first the website was daunting and I thought of hiring a college student to help me. But today I jumped right in, spent the whole day (until 4:26PM) when my eyes were too tired, and my frustration level too high to continue until tomorrow. My goal is to get real books to show the booksellers in New York’s Javits Center in June. I now have an ISBN number; it’s copyrighted, I wrote the blurb for amazon.com, dedication and acknowledgement pages. I have yet to design the cover and write the blurbs for the back.

Friday was the first meeting of the support group I led by myself; Alica has taken a full-time job and will be available once she has her schedule at work set. I invited Steve to join me. We both enjoyed meeting with other family caregivers, hearing their stories and adding our experiences. We spoke of elderly relatives driving "only short distances," or "only where they know the route." I was reminded of my mother's excursions which had her locking herself out of the car with the motor running. Cars are now engineered so that can no longer happen, which is great. Mom also intended to drive to Aunt Lisa's house and never appeared. We were all frantic to know where she was. She returned home several hours later, having gotten lost and eventually finding her way home.I thought of my Aunt Lisa, who backed into a pole when driving from the hairdressers; she was in her late nineties then, but became so frightened she stopped driving voluntarily.
My husband, during the year he travelled with me to New Jersey each week used to take the car and run errands while I saw my patients, until he had a car accident in which he broke his arm. After that, he decided he would no longer drive. He prided himself that he made the decision for himself."No one had to tell me to stop driving," he said often, "I knew when it was time."

Thursday, November 17, 2011

Ninth Inning for Outings November 17, 2011



The time for taking Bob out of the assisted living home for an outing is slowly coming to an end. It is now eight months since he entered Sterling House. In the beginning we were afraid to take him out, as he requested, for fear he would not want to return. But that fear seemed to be unfounded; he enjoyed the outing and was content to return to known surroundings. He would say, “This place is familiar,” or “I know where I am,” or “I know you,” to the staff member who opened the door for us on our return.

He was always hungry and wanted to go to a restaurant. No matter what time it was, no matter when or what he had had to eat, he always ordered heuvos rancheros and ate quickly and heartily. No longer. At first, he couldn’t find the eggs hidden under the cheese and only ate the tortilla with the sauce, so we ordered a more simple breakfast meal for him, which he seemed to enjoy. However, waiting for the meal to be served has become difficult for him and he is used to eating whatever he is served.

My son Steve enjoyed outings with Bob to large stores and I took him to his favorite thrift stores, but today, when we were in Home Depot, Bob said, “I don’t want to be here. Let’s get out of here. A half hour ago I would have liked this store, but no more.” He had just finished admiring the hardware aisle, commenting on how much money this store must be worth as well as trying out the wood drill and making a hole in the lumber provided. It is so sad to see that he realizes what he has lost.

Of course I understand his frustration. What reminded him of past accomplishments now is only a reminder of words he cannot find to name the things he sees. Two days ago, we took Bob to the pet store, thinking he would enjoy seeing the puppies, kittens, birds, guinea pigs, hamsters and fish which were on display. “I don’t want to be here,” Bob said while watching through the glass as a group of dogs were being trained by their owners, “Those dogs are being tortured.” As for the kittens, he said, “I don’t want one.” The birds, he said were “a little all right.” The fish he did not attend to at all.

Bob no longer enjoys feeding the ducks at the park. He complains if there are children on scooters, or if there is a fisherman nearby. He eats the stale bread we have brought; he worries about having to use the bathroom and attempted to urinate outdoors. He also worries about finding the car in the parking lot, but he no longer asks me if we have sufficient gasoline. I see how his life is diminished and I begin to miss even his cantankerous self. At least we knew Bob was still “in there” somewhere.

I hate this illness, but I understand where he is coming from. He now thinks we take him to a store only to purchase something. His acquisitiveness is gone; his collecting instinct is no longer functioning. His world has narrowed; he wants to go out of the house for a walk, for an ice cream, for a short outing that does not remove him from his secure zone for a long period of time. I am so sad, yet I am also grateful that my son Steve is willing to share so  many of these experiences with me.


Tuesday, November 15, 2011

Tuesday November 15,2011 science post

Today's subject is gluten and my information was gathered from an article in The NY Times Sunday Magazine titled HurtAllOver and from a book I just received from Rodale Press called The Gluten Connection by Shari Lieberman. A little background information first.
I ave always been sensitive to milk and then also to milk products. I didn't have a name for it until my mother, when I was already 50 years old, sat next to me in the movie theater and told me I had to "Do something" about my indigestion. There was no longer a doggie to blame anything on! I then tried lactaid milk and pills with no success; I had to stop using any product that contained milk, except sheep's milk, and I was fine.
Twenty years later, I again experienced the same symptoms and worse; I had uncontrollable diarrhea which sometimes occurred as I was walking in the street. Bob was already experiencing memory lapses and becoming very dependent on me, so I self-diagnosed Irritable Bowel Syndrome and to remedy the tension I felt caused my symptoms, I joined a self-help group online for Alzheimer spouses. It didn't help. My doctor recommended fiber supplements which only added to my social inacceptability.
The following year, the gatroenterologist finally suggested I omit gluten from my diet-- no more bread, rolls,cookies, cakes, pasta. I tried that with moderate results. During that year I lost ten pounds which I have kept off. That was a bonus I enjoy, but my problem recurred every so often.
What I am finding out now is that I have to be as careful with products that contain the least amount of gluten--no potato pancakes, unless made with rice flour, no more gefilte fish-it has matzoh meal, no more Chinese food, the soy sauce has wheat as its second ingredient.The book helped me with ingredients to watch forand with restaurants which have gluten-free menus. By the way, even choosing "safe" foods in a restaurant doesn't work as there is "cross-contamination" in a restaurant kitchen unless they have a gluten-free or "alerganfree" policy in which they keep mixing bowls, pots, pans and griddle separate.
So yes, we caregivers are stressed, but don't stop there if you have physical symptoms. Fight for a diagnosis that fixes the problem. It is "not merely" being tired, or older, or psychological.

Saturday, November 12, 2011

Power to the people- Saturday, November 12, 2011

I just spent three days learning about community organizing and the importance of people sharing the stories of their lives with each other and by doing so, developing relationships of trust, through which we all become stronger and which enables us to form alliances with each other, especially those of us who have similar issues within our stories, in order to produce some joint action which will bring about change in some public way that is important to accomplish.
Here you have the reason I started this blog; by sharing my experiences as a caregiver to an Alzheimer diseased spouse, I hope to develop relationships with my readers. It is true that no Alzheimer patient's story is exactly replicated, we are all different people; however, our experiences as caregivers is similar enough that we can develop bonds which have the potential of freeing us from the isolation we all experience.So we provide support for each other, in person or technologic-ly. Perhaps hearing or reading about my story will help you in some way to understand this complicated process, get additonal help as needed from trusted resources, but is there more we can do?
My chapter today is about speaking up to the assisted living center where my husband resides. I needed to learn not to furnish the additional care he needs now by myself, but to sit down with the agency leaders and rework the care plan in order to meet Bob's changing needs.

Wednesday, November 9, 2011

Wednesday, November 9, 2011-Outside the Box

The nurse from Sterling House phoned me yesterday. "Phyllis," she began, "It's straightened out now, but I need you to know..." and she detailed a medication error, a change made by the physician that was not transferred to the med tech, that she caught and fixed. Then she asked, " I heard you were writing a book about your husband's experience. If so, I have a suggestion for a title."
Intrigued, I of course told her about my manuscript. She advised me of several prominent people whom she has met who might promote my book and asked to read it. Finally, she told me her title idea and why she had chosen to share this with me."Never have I seen anyone take the path in this disease that your husband has been taking. His is the most atypical  trajectory I have ever witnessed."
She is referring to several facts. Bob seems to have adjusted to the setting; he knows where his room is and to whom to go for help when he needs it. He goes to Betty who saves crackers and peanut butter for him, to Sandy for bananas or apples. He lets Anna scratch his back at bedtime, he is even going for five minute walks outside the front door with Leslie, the activities director, every afternoon.
But he's not nice. When asked by Betty to help her shred papers, he does do so for a minute, then throws the paper at her, exclaiming, "Why should I do your work?" He sometimes spits out or hides his medications, which I find when I clean his room preiodically.He claims to dislike the people who use walkers or wheelchairs.
He also dresses himself in layers and layers of clothing. He is still "collecting" books from all over the house, claiming they are his, but he is no longer writing his name inside.
Yet, when Steve met us at the Village Inn for lunch on Monday, Bob said, "This is seventh heaven. I have both of you here together."

Sunday, November 6, 2011

100 Words for Sunday, November 6, 2011

It is 74 degrees in the house as I dress in jeans and reach for my sweater. It has rained all night after a dust and wind storm that obliterated the mountains from view all day yesterday. Today the sky is a composite of shades of grey, but the world is light; it does not feel oppressive or gloomy as it might in the city. Although the media hyped up the storm and many cars collided, Arizonans love the change, the short respite from the sun and warmth. No need to find a tree to park the car under today.
And by the following afternoon the sun was shining again and the temperature had risen from 55 to 80, with a clear soft breeze.I find it amusing that I respond as an Arizonan, looking for a sweater indoors in weather I would be delighted to see in New York in short sleeves. I also cuddled myself into my comfy chair and caught up on some reading, using the threat of rain as an excuse to remain indoors all evening. I spoke with friends in the city who were out and about before, during and after their snowstorm last weekend. "You know, Phyllis," said Roz, "in the city it's just a bunch of slush. I went to my concert anyhow. I waited for the bus and then walked two blocks."
Everything is a matter of attitude and choice. Whatever decisions we make work for us today, and we don't have to be locked in to the same choices tomorrow, especially for us retirees who don't have to go to work or to school no matter what the conditions are.

Saturday, November 5, 2011

Saturday, November 5, 2011

It's been an interesting and busy week. I participated as a co-leader in my new Alzheimer support group. The leader, Alica has now taken a full time job, so I probably will inherit the group; either way it will be interesting. Steven found a very informative newsletter online and sent it to me--www.agingcare.com. There are practical tips on everyday problems and one which is really neat. A GPS in the shoe of an Alzheimer diseased person who wanders!That's much more civil than an implanted chip and easier to have with the person than a bracelet or a pendant.The site allows folks to post a question and receive responses from other readers.
I spent several hours this week re-reading the manuscript of the book I have written which tells the story of my transition to caregiver for my husband as he began to have difficulties which led to his diagnosis of Alzheimer's disease several years ago. I hadn't looked at the manuscript for a few months as I am a bit discouraged by how hard it is to get a book published these days. But it is a good book and now I will devote more time to self-publishing it!
Meanwhile Bob's skills are diminishing further. He is having problems locating the bathroom when he needs to use it. He doesn't seem to be bathing regularly, at least he smells like he hasn't showered or brushed his teeth. His conversational skills are poor, but we hold hands and swing on the glider peacefully. It's important for me that he smell better.
So I contracted with the care manager for more hands-on supervision of daily living skills, of showers twice a week and removing his soiled clothing from the room each night, so he can't use it again until after it has been laundered. I really don't want to move him to a memory care facility where the residents remain in the dayroom together all day unless I try everything else first to keep him at Sterling House, where he knows where his room is and he is familiar with the routine, even when he refuses to participte in it.

Wednesday, November 2, 2011

Tuesday's science post- a day late

The Science Times article in yesterday's paper featured an article about a scientist, Michael Gazzaniga who studies how the different parts of our brain work. He discovered that the left side of our brains "fills in" information from the facts available to it. "It takes what it has and delivers a coherent tale to conscious awareness." We all have done this-- "overhearing a fragment of gossip for example and filling in the rest with assumptions."
He has found that we all have a storyteller part of our brains that works with the information available to it -- and fills in the rest. He calls that part of our brains "the interpreter."
All of our brains create the illusion of a meaningful script,as well as an illusion of a coherent self! "We furiously reconstruct what happened and why, inserting motives here, intentions there--based on limited, sometimes flawed information." This filling in of information is done subconsciously. In psychotherapy, we help people bring to conscious thought some of the myths they have created which interfere with their life functionning.
But my focus now is on what's happening with our loved ones brains that are limiting available information every day. They still try to construct a coherent narrative. No wonder it sometimes comes out paranoid. If the information is missing, someone must have taken it!!!

Saturday, October 29, 2011

Saturday, October 29, 2011

I always grapple with what’s below the surface, in my thoughts, in the news headlines, in the content of what I happen to be reading. Having just returned from a visit to the Grand Canyon, Zion National Park and the San Francisco Peaks, of course I am more than ever aware of the insignificance of each of us and all of us in this vastness of earth that surrounds us here in Arizona. We also visited Sunset Crater, which is less than one thousand years old and indicates anew that volcanic eruption will continue in the millennia to come.

So why worry? Be happy, as the annoying song goes, “Don’t worry, be happy.” Smiley faces abound, yellow and cheerful. I had a wonderful time, a unique experience, and a new experience to be away from home without Bob. I am so fortunate that Steve is here to visit when I am away, giving me a sense of freedom I would not have, had we remained in New York three years ago and not purchased our home in Arizona.
What is also amazing is that had Bob and I visited Zion National Park by ourselves, my experience of it would have been severely limited. I saw the Tauck Tour buses roll in to the Lodge and disgorge their mostly sedentary tourists who had three hours to eat lunch and to walk the two- mile- paved riverside trail which requires no extra clothing, hiking shoes or other equipment. We might have been among them when we tired of European travel someday. Again, because we moved here, I walk more, I train more frequently at the gym and I am in sufficient physical shape to clamber up the switchback trails on a mountain! Life changes, life changes me and the result is not at all completely negative; it’s just so sad that Bob is ill

Wednesday, October 26, 2011

Tuesday-Wednesday October 25-26

An article in the NY Times this weekend spoke of the Class Act 's failure. This bill was supposed to provide some relief for the millions of middle class families caring for  chronically ill or demented family members, at home, due to lack of insurance coverage or sufficient funds to pay for out of home placement. The bill was first proposed during the Clinton Administration and it seems as if noone has been able to figure out how to pay for this needed insurance. The article reported that less than 3% of people have long-term care insurance. Couldn't a plan for promoting long-term care insurance that is currently available meet that need??
Why don't people buy long-term care insurance? Families provide life insurance for each other, probably for the benefit of minor children, should an early death intervene with savings plans. Couples invest in 401K or 403B savings plans to provide for their retirement, but we don't think long-term care. If one member of a couple becomes disabled and the family is neither super wealthy nor poor enough to qualify for federal aid to the poor(medicaid), the illness could and does deplete the savings of both partners. I guess then the surviving spouse gets his/her nursing home care paid for by the state.
Which is fine, if the surviving spouse survives and develops a handicapping condition. What happens when the surviving spouse is healthy? Then he/she becomes a burden to the children if there are any who are able to provide.

Sunday, October 23, 2011

100 words for Sunday, October 24, 2011

We visited the Desert Botanical Gardens one year ago today, viewing the agaves, aloes, ocotillos and the prickly chollas, the miniature cacti and the magnificent saguaros that live to 300 years. We wandered among the desert wildflowers, attended a lecture on Alzheimer’s Disease, lunched on the patio where Bob fed my pita, but not his hot dog bun to the birds who landed by his feet. “A wonderful day,” exclaimed Bob as we leisurely followed the red path to the “salida” (exit). I remember an Oscar Wilde quote:  “I adore simple pleasures—they are the last refuge of the complex.”

What a difference a year makes.When we go to feed the ducks at the local park this October day, Bob is annoyed that there are children present, riding their skateboards and scooters. He tires easily, perhaps physically, but what I see mostly is an inability to sustain attention. He wants to go for a ride in the car, he enjoys looking at "tools" at Home Depot, or Lowes, but he is always glad to return to the assisted living home where he feels safe.




Sunday, October 16, 2011

100 words for Sunday, October 16, 2011

At the gym, Debbie, an Iron Maiden competitor in her spare time, drives us hard. 50 reps of each move on one side before we switch; singles, holds, pulses and singles again. Standing in the front row, I watch the others in the mirror. Without groans or facial grimaces, they comply. At the water break I go to lighten my weights, and say, “Next time I’m going to use only one riser.”

“Go do it now,” Debbie answers, “Anyone who wants to lighten their weights or drop a riser, go do it now.” I’m amazed at how many switch. Why?

Did my example influence the others? Were they complying with requests above their ability because they thought it was expected of them, did the instructor's permission to lighten their weights carry the weight, not me at all? Or did my example lower their own expectations of themselves? Lighter weights are easier to manage after all.We all have to be aware of the reasons for our behavior. Are we following some leader blindly, regardless of our own best interest in order to please someone either in charge or in power?
The nurses at Walgreen's arrived at the assisted living community yeaterday to give everyone flu shots. I had signed permission for my husband to receive his flu shot from them two weeks ago.Bob however, was not going to follow along. He refused. When I arrived later in the day, he told me,"Real doctors came and tried to poke me with a needle but I said no, 'my wife and I do these things together.'"
Good for him. The little spark of Bob that remains is vital to nourish. I will take him to our regular physician's office one last time, for a flu shot. I also asked him of he would like to visit our dentist for "our" regular checkups, to which he agreed--today at least.

Thursday, October 13, 2011

Stress and that which stresses us Thursday, October 13, 2011

As I sit in a doctor’s waiting room, I see a copy of AARP magazine. I never joined this group, since they started soliciting my dues when I turned fifty. Then I felt that nothing within the magazine had reference to me. My father had died, but my mother was healthy and vibrant. Today however, I appreciated each article and the ads as well. One spoke of Alzheimer’s disease and the many articles about the disease in the media this summer. A poll showed that many folks think there is a test that will tell them if they have the disease. Many more feel that early testing will provide medication that would be helpful for them.

The article reiterated that both feelings are so far, false. There is no definitive test available today that can diagnose early stage Alzheimer’s. There are merely the mini-mental tests, the MRI’s, the questionnaire that have been around for a while, which many neurologists feel are sufficient to diagnose Alzheimer’s disease. In my experience with my husband, they were unwilling to diagnose him with Alzheimer’s disease until he reached the Moderate stage. Earlier the diagnosis was Mild Cognitive Impairment. Before that, the first neurologist told us “It’s probably some sort of dementia.”
The medications that are so far available delay the process of the disease for a few years at best, but no cure is available. There is much work that needs to be done. Only in clinical trials are some people able to be diagnosed early and some will participate in testing new and promising medications.

So when I worry about my own forgetfulness, when my friends recall their memory mishaps, we are still left with self- diagnoses of stress and we tell each other to slow down, take it easy, reduce the stress and enjoy life. It works—until the next time we misplace or forget something meaningful.

Wednesday, October 12, 2011

Tuesday-Wednesday, October 11-12- Supplements

 When my husband first noticed he was becoming forgetful, I discussed the topic with my friends, one of whom suggested I read a book about memory. I read Dr. Weill’s book and had Bob take the tests at the end of each chapter. The results of the tests indicated which supplements Bob needed, so we ordered the supplements and for a whole year, Bob took seventeen pills each day to help him remember to empty the pan under the boiler, to put Rid-x into the toilets each month and other routine homecare tasks which he had been doing for almost 40 years.
I decided to take some of the supplements, too. CoQ-10, vitamin e, a multi-vitamin with minerals for those 50 plus were on my list, along with the calcium and fiber. Neither one of us noticed any difference, none of our physical exams showed any changes as we didn’t have vitamin deficiencies because we eat a healthy diet full of fruits and vegetables, even though Bob never liked whole grains and preferred white bread and white rice.
So now two studies out this week begin to indicate that vitamins and supplements which are not needed to correct a deficiency, do nothing to support good health and in excess, some might even be harmful. We all need to check with our physicians and see what we can eliminate from our daily doses of supplements as we increase our intake of fruits and veggies.

Sunday, October 9, 2011

100 Words for Sunday, October 9, 2011

After spending many hours at the synagogue, I feel cleansed, surrounded by new acquaintances who seem willing to become friends. During a break, from one o’clock until four, I visited Bob. When he saw me he said, “I feel rewarded when you are here.” As it was a temperate day, we walked, holding hands, to the strip mall near his home. At the thrift store, he found a pair of shorts in his size for $5.99 and some plastic hangers for sixty-nine cents. At the register it was fifty per cent off day, so the items totalled $3.69. Successful day.
And another 100 words for this auspicious day:
I enter the meeting room and look to find a seat next to someone I recognize near the front. Seeing Marion, I join her and explain my reasoning. She says, “I always like to sit up front; I feel more connected here.” So do I. The feeling I have is one of belonging, of being a part of an experience, not merely an observer or an audience member. I am replacing my beloved, demented husband with strangers, other single women my age; all have had losses and live with their memories of past years- daring to hope for the future.

Looking toward the future, finding some space to have fun, reducing that feeling I carry with me that I have to be busy doing important work so I don't feel guilty that I am not spending my time with Bob is my goal for this year.
I am at the home with Bob for two to three hours twice or three times each week, yet every time I sit to read, or just "do nothing," I feel I "should" drive over there. "It's only 10 minutes away" my brain says, or "He'd really like some of this fresh fruit." In order to get myself out of that frame of mind I have had to get up and DO something productive, which is stressing me. My digestive system is warning me; change or suffer the consequences. Other members of my support group have similar feelings; one woman removed her husband from his assisted living placement and has him back home on his "promise" to be more civil.
Of course the meaning of all this is once again finding the balance between self- regard and regard for others, work and relaxation, being productive in helping others in our communities, within our families and within ourselves.

Wednesday, October 5, 2011

Tuesday-Wednesday October 4-5 Altruism

Here’s a topic that’s been lately in the psychological press. My information  comes from Tuesday’s Science section of the NY Times. The article, entitled The Pathological Altruist Gives Till Someone Hurts, speaks about helpfulness going too far. It speaks about selflessness going too far as well. The example of helpfulness going too far here is related to performing surgeries and other invasive procedures on patients who are near death or otherwise incompetent.
Of course my association is to Alzheimer’s disease patients or those suffering from other dementias. What is the right thing to do if a loved one incurs a stroke or heart attack and the physician recommends a spinal tap or open heart surgery? Do we caregivers always follow what the surgeon recommends because “there’s always hope?” It is so important for families to discuss these matters when everyone is well. Then a medical proxy can be drawn up that details in advance what the person desires for his/her end of life .
If there is no such document or if there hasn’t been such a discussion, the other half of this article on helpfulness going to far comes into the discussion. The example in the article talks about people who hoard animals, women who continue to live with abusive husbands or men who tolerate alcoholic wives. In my experience with people I have met and interviewed in caregiver groups, it also can apply to those who continue to care for their demented spouses at home, by themselves, until they become ill or even die. A lifetime builds up behaviors that are so difficult to change, even when the circumstances lead to the severe problems for the caregiver. That’s why it is so important to belong to a caregiver group, to hear how the other members handle similar situations, to learn to follow the Alcoholics Anonymous motto which asks for our Higher Power’s assistance in changing what we can change, accepting what we cannot change and in knowing the difference.    

Sunday, October 2, 2011

Sunday October 2,2011 100 words

Paper can be lovely, from delicate to sturdy, in colors and textures, but when stressed, i.e. by water, it disintegrates to pulp; facial tissue and paper towels however, have been treated to become stronger when wet. Which do I want to be?
When I am stressed by life, I carry on, the “quicker picker-upper.” But often, the price I pay is a strain on the relationship when a person stresses me; I erupt with a hurtful comment, which then brings a rejoinder comment. The immediate pressure is reduced, the request is withdrawn, but I feel guilty later and give in.

The stresses of a spouse whose loved one resides in a facility are similar to the stresses of any family members who deal with someone they love who is challenged in some way. The show on TV called Parenthood  showed how stressed the mother of a boy with Asberger's Syndrome was, as she waited for the teacher in his new mainstreamed class to return her email. We want what is best for the one we love, but how much control do we need to surrender? How do we let the "little things" go and maintain positive connections with the immediate caregivers?
Bob was thrilled to see me, both on Wednesday and on Friday this week. He was actually standing by the door when I arrived. "Phyllis," he asked, "we're married, right?"
"We sure are," I replied, giving him a hug and a kiss.
"So why can't you live here, where I can see you whenever I want to, and hold you whenever I want to?"
He was dressed appropriately, he sported a new haircut and was cleanly shaved.But when I saw his room, he had no toilet paper and his closet smelled foul. When I chatted with the medical technician, she informed me that Bob was still ordered to take several medications that the nurse practioner and I had agreed we could eliminate or reduce.
Knowing myself, I struggled with my tone of voice as I spoke with the care manager, but try as I thought I did, she still sounded defensive.
Friday afternoon, Steve and I took Bob to Wal-Mart, which he loved. Bob chose a ceramic replica of Casper the friendly ghost which we gave as a peace offering to the care manager.

Wednesday, September 28, 2011

Back to reality Tuesday-Wednesday September 27-28

The flight was smooth, but I was anxious to see my husband. I asked my son Steve to drive directly to the assisted living community. He attempted to persuade me to unpack first and visit later, but to no avail. We arrived at the facility at one o’clock, supposedly just as Sunday dinner was ending, so I was not surprised when the door greeter informed me that Bob was in the dining room.
I entered and observed him from the rear. Major Bed Head was seated at his table. Bob had a fruit cup in front of him, so I assumed this was his dessert. I walked around and said, “Hi, Bob.” He answered, “You’re here,” without any expression on his face and continued to pick up his grape with a fork. A worker arrived with a chair for me, as another arrived with Bob’s dinner.
Bob picked at the corn, and at his teeth where the corn was getting stuck; he spit out the skin on his roasted potatoes and moved the brisket around on his plate.  “Bob,” I asked, “Would you like to go out for lunch with me?”
“Sure,” came his immediate response.
Bob walked, holding my hand, to his room. I removed all of his extra shirts, reminded him to put his belt through the loops and handed him his comb. He was able to accomplish most of the dressing tasks, once I presented each item. The skill decline in the past few weeks astonished me.
At the restaurant, Steve asked for us to be seated so that Bob could see the restroom door. After lunch, we drove to my daughter Linda’s house to see her new cat. Bob watched a bit of football with my son-in-law Dave, asked for and drank a small glass of beer, but wanted nothing to do with the new kitten. “And you shouldn’t either,” he said, “Cats are dirty.”
Bob’s family always had cats for pets.

Sunday, September 25, 2011

More about Change

As you read this, I will be up in the air recovering, returning, rejoicing and remembering. I am recovering from my first dinner party without Bob that I hosted for ten of our dearest friends, recovering from hearing his voice reminding me how to hold the cutting knife properly, to be careful on the stepstool in the kitchen, to mince the garlic and to chop the vegetables in uniform slices. I also heard him chastise me for cooking a recipe for guests that we had not prepared in advance, just for us, to taste and to adjust.
Our friends verbally remembered Bob, telling stories of parties we hosted “on the roof” in our previous apartment and of the cordials he invariably placed on the table with tiny glasses, at the end of the meal. I did the same, opening a bottle of Bob’s Old Apricot Cordial from Austria. We all toasted Bob. Everyone requested I relay their thoughts and good wishes to Bob; a few did not previously know that he is in an assisted living community. They also told stories of others they have known, whose personality became hostile with the advance of Alzheimer’s disease and who needed to live in a secure, safe environment. Quietly, out of earshot, one woman inquired, “Will he know who we are and that we wish him well?”
 I am returning home, from what was our community for ten years, to be once more with my family and with Bob. I am rejoicing in the warmth and love that still surrounds us both, and although I am grieving, I will still be able to see my husband and to hug him when I return.

100 Words for Sunday, September 25, 2011

It’s Saturday night at 9:43 and I’ve nothing written –for my 100 words, that is. I wrote a chapter for the new book today, the possible sequel to Put That Knife Away, about out-of-home placement for demented spouses. My manuscript is finished; my cousin Nora copy edited it in Switzerland, one chapter at a time, via email. Mindy read it the first week in May, as promised. She made some good suggestions. As I re-read it, I can see how it leads up to Bob having to live in a secure, protected environment--so different from my mother’s Alzheimer’s disease.

Thursday, September 22, 2011

Thursday-Friday, September 22-23

   While it is true that, like most people, I dislike and even fear change, the change of seasons, especially from summer to fall has always been an inspirational time for me. I feel hopeful as a new school year gets underway; I am enthused to begin new projects, one of which you all are witnessing this week. As the weather cools, I feel energized to write as well as to walk and to exercise. I will even participate in my first ever organized hike. In October, I will join a hiking club on an expedition to Zion National Park. Looking forward helps me to deal with the more difficult aspects of my current life.
This Fall marks the sixth anniversary of selling our Chester, NJ home and the fifth year since Bob’s diagnosis of “some kind of dementia.” We returned in the fall three years ago from our last European trip. We went to Zurich, Switzerland and took two trains into the Alps to celebrate my cousin’s birthday. How Bob loved walking down the mountainside with Nora on his arm.We even ventured by ourselves for four days to Prague, an excursion which Bob remembered joyfully for quite some time. I miss our life together; everywhere I go, whatever I do, I am reminded of the good times we shared over the past 22 years.

Tuesday, September 20, 2011

Tuesday-Wednesday September 20-21

Thank you so much for your warm welcome. Most of you liked the 100 words on balance.
 Today I want to share with you two articles from the New York Times, one from the Sunday magazine(nytimes/lives.com) and the other from today's science page(nytimes/science.com). Both tell stories of  women who lost all of their memory, one by a freak accident in which a ceiling fan fell on her head and the other due to an attack of viral encephalitis. What surprised me was their ability to learn new information without regaining old memories. Su Meck lost her memory 23 years ago at age 23 and is now enrolled in college. Lonni Sue Johnson, now 61, became ill in 2007. She is again creating art, differently from the art she produced prior to her illness, but which still retains the freshness and joy of her previous work.
The doctors are now trying to solve the mystery of what parts of the brain are needed for creativity.When my mother had Alzheimer's disease, she was still able to play the piano.That musical ability did not disappear.
It surprises me all the time, not what my husband, who also has Alzheimer's disease, forgets, but what still remains. Even though he has lost so much of what made him who he was, parts of his personality still remain: his interest in tools, in collecting books, many of his fears and prejudices.
The most important quote, for me was the statement by Michael McCloskey, a professor of cognitive science at Johns Hopkins University,
"There is something about your identity that is distinct from memory."
It's hard to name what it is, but I see it every day.

Monday, September 19, 2011

Intro

Welcome to my blog. I am a retired psychologist, a memoir writer and my husband has Alzheimer's disease. I belong to a club in which each member writes a one hundred word story about their life every week. My day is Sunday. Each week I will share with you my 100 words and I hope that you will comment and perhaps write your own to share on this site.Here's the one from yesterday.

                                           Balance
“On your toes, lock your knees, lift your arms and hold,” intones the dance instructor. “Now, muscles tight, bend to the right, lift your left foot and balance.” Sometimes, momentarily I can maintain the posture. So it is with my life now. When I make plans my days are full; so are my head and heart as I fill the empty space inside myself with my friends’ lives and pains. At home, I fill myself with reading and with food. I buy already prepared dishes at Zabar’s and I snack on everything in sight. Balance is fleeting and elusive.




I read as much as I can find about research to prevent, cure or assist in the care of Alzheimer's disease and I'll share my readings and my comments about what I find, like the article this past week about insulin in an inhaler. Wouldn't that be great if we could improve memory function through sniffing insulin! There's lots more research and trials needed before any practical use can be applied, but it certainly looks promising. What do you think?
I will also answer questions you may have about Alzheimer's disease or suggest locations to find the answers that may be available, as I share the story of my husband's journey.