100 words for Sunday, April 29, 2012

I hurt as I did as a nursing mother leaving my infant even with the most competent caretaker. When I shared this feeling with Steve, he said, “Mom, when you came back last year from vacation I had a hard time handing Bob’s care back to you. I know how you are feeling. Go, he will be fine.”

Communicating uncomfortable insecure parts of myself felt shameful all my life; it was enough, I thought, for me to be aware of those parts of me I didn’t like, sharing them with another felt too vulnerable, too open to criticism. No longer.

Returning alone to the life my husband and I shared so lovingly for such a long time is better than it is sad.This apartment is a very expensive  vault where all of my good memories are stored along with lots of our collected "stuff" from heirloom china to plates and paintings brought back from our travels, recipes and Bob's cooking equipment as well as penkives, tools, exercise weights, winter clothing and photo albums. The building staff, the members of our synagogue, even the fruit seller on the corner greet me as a long-lost relative and welcome me back. Each one asks about Bob; no one likes my sad look as I say, "No, he is not with me, he is being well cared for in Arizona." " I had to ask," one acquaintance replied. I know.

Finally a Professional Review of My New Book

The Feathered Quill Review

 

Biographies/Memoirs

Put That Knife Away: Alzheimer's, Marriage and My Transformation from Wife to Caregiver

By: Phyllis W. Palm, PhD
Publisher: CreateSpace
Publication Date: January 2012
ISBN: 978-0615570679
Reviewed by: Ellen Feld
Review Date: April 2012

Many of us have either personally experienced dealing with a loved one slowly slipping away due to Alzheimer’s, or know of somebody who has dealt/is dealing with the disease. It is difficult for all involved and unfortunately, those who are thrown into the role of caregiver suffer as well. They may not know what to expect, what to do, and feel abandoned and alone. Phyllis Palm, who experienced all of these emotions as she cared for her ailing husband, also put pen to paper to share her experiences with others in the hopes of easing some of their angst and confusion. While therapeutic to write, the author also wanted to share her experiences so that others might recognize the early signs of dementia and seek medical help quickly.
Phyllis and Bob had a wonderful life. A second marriage for both of them, they each had grown children from their first marriages, and they were deeply in love. They traveled, went to Broadway shows, and dinned with dear friends – in short, the perfect life. That was, until Alzheimer’s began to take its toll.
Looking back, the author now realizes that there were little signs that her husband was having problems. At the time, however, she chalked it up to simple aging issues. One day Bob announced that he wanted to sell their house, a house he had loved for 36 years. Phyllis thought it was, perhaps, because he felt the need to downsize but still, she couldn’t help but feel that it wasn’t right for him to part with his beloved house. But Bob also began forgetting to send his children birthday cards, something he’d always enjoyed doing, and got annoyed when reminded. Then he decided not to send cards at all. In addition, he no longer wanted to drive the car, he preferred staying home and was relying on Phyllis more and more to make decisions. With the urging of her friends, Phyllis finally made an appointment with a neurologist.
The author recounts her frustrations with the medical community, from the doctor who seemed to blame her for her husband’s condition, to the doctor who seemed totally inconsiderate of Bob’s condition. Many doctors, she noted, seemed to be in competition with each other which led to drug interactions and other problems. Bob, meanwhile grew more confused and agitated.
As Bob’s condition deteriorated, Phyllis changed her schedule, and life, around to accommodate his needs. Her whole world was soon consumed with Bob’s welfare. And, as she recalled, “Nothing is stable, nothing is predictable and nothing stays the same for very long.” (pg. 119)
When Bob was also diagnosed with Parkinson’s disease, again the medications needed to be adjusted and Phyllis was the one who had to deal with all the repercussions. As well, she had Bob’s children, who seemed to initially blame her for many of the problems, to negotiate. But it was the changes in Bob’s personality, going from a mild-mannered, sweet, loving man to a stranger who might explode in a dangerous tirade at any moment, that frightened and challenged Phyllis the most. Medication helped, but not every problem can be solved with more medication.
The author has written a very personal, very informative book about life with a loved one who is suffering from Alzheimer’s. More than a document about what to expect (and the author acknowledges that the effects of the disease are different for each person), and how early diagnosis can help, this book addresses the needs of the caregiver. Many times Phyllis admits to feeling like a failure, that she somehow didn’t do enough for her husband. Her health suffered and it was only through time, and with the support of others who were in the same situation, that she realized she needed to take care of herself. “I take very seriously the admonition that we caregivers must take care of ourselves…” (pg. 168) If you are looking for a book that addresses all aspects of life with an Alzheimer’s patient from a caregiver’s point of view, you should consider Put That Knife Away.

Quill says: More than a look at one family’s battle with Alzheimer’s, this book is a survival manual for caregivers and reassures all that you are not alone.

For more information on Put That Knife Away: Alzheimer's, Marriage and My Transformation from Wife to Caregiver, please visit the author's website at: www.phylliswpalm.com

Tuesday's Science News April 24, 2012

I discovered another website that is beneficial for family caregivers and for professional caregivers as well. It is titled www.remembering4you.com and discusses both the stages of Alzheimer's disease as well as stages of caregiving. Although it is a bit simplistic it is valuable to understand how much time, effort and emotional drain it is for the caregiver to attend to the needs of loved ones in each of the stages of this awful disease.
For example, I visited at the care facility where my husband lives, after supper on Sunday. I found him wandering near a staff member, attempting to remove a pair of sweatpants he was wearing. The staff member kind of dismissed his concerns and said she was glad I arrived to see how disoriented my husband becomes.
Well, the sweatpants are not his, I know he dislikes sweatpants; when I offered him a pair of shorts instead, he sat on his bed, removed the slippers and the offending pants, dressed himself in the shorts I offered and put on his slippers again. Yes, he needed to be directed each step of the way, but he was able to accomplish the task by himself and felt better, no longer "disoriented" at all. We went for a stroll on the grounds, played balloon catch with another resident and when I left, he was ready to settle down for the night.
Imagine how draining this is twenty-four hours a day, figuring out what is bothering a person who no longer is articulate enough to describe his needs and wants, finding and then implementing a solution to the immediate problem and then redirecting the person to a more pleasant activity--which may only be effective for ten minutes until another issue upsets him.
Now imagine you are one of two care workers on a 21 bed unit of late stage Alzheimer patients on an evening shift! I admire them so much.

100 Words for Sunday, April 21, 2012

With fifteen presentations now completed, I am off to Tucson for A Book Fair at Bookman’s New Author event, a preview of the June BookExpoAmerica in New York. It is very gratifying to receive emails and phone calls from senior women caring for their spouses who have been diagnosed with “some sort of dementia” who, after reading my book, feel heard, understood and not so alone. But I also hear from daughters, caring for one or both parents, usually after one parent has had a fall or a stroke and a “cover up” is detected. Memory loss experienced as shameful.

It was my privilege this week to be a substitute group facilitator for a retirement community Alzheimer support group. As usual I learned more than the information I provided. I began to understand the value of community to these folk who often do not have family living near them. In our mobile society and in our children’s  frequent moves to find schooling and jobs for themselves, the parents, who move to avoid the winters or who no longer have lives on their farms which have been sold or jobs that no longer exist, relocate to the warm climate and find solidarity among their new neighbors.

I learned of communities that protect the demented spouse on outings, drive to medical appointments, and even come with food or with offers to bathe a neighbor. Hillary Clinton was and is right, but it takes a village not only to raise children, but to support each other where there is a disability. I learned that happy hour bus trips to local restaurants provide a method of dealing with sundowner’s syndrome, where the person with dementia gets more confused and agitated at the end of the day. These trips on the bus offer him company, light conversation and distraction from worries. The caregiving spouse also has others to speak with and an outing to enjoy where she is not completely alone with her spouse.

Here in my community I hardly know my neighbors; we merely wave at each other in passing. Do you know yours?

Caregiver Burnout Friday, April 20, 2012

It is so interesting that the media has picked up on this topic. While it is true, murder is sensational, it is so not the right way to support caregivers. As I wrote about a few weeks ago, when Mr. Snelling killed his Alzheimer diseased wife and then shot himself, I feel very badly for his family and others who resort to violence; they have the burden of both deaths.
As I describe in my book, Put That Knife Away- Alzheimer's, Marriage and My Transformation From Wife to Caregiver, there is a real change that takes place in the caregiver as the loved one changes due to the disease process of dementia.At first, there is a good feeling of being helpful to a beloved spouse. For a short while when the spouse has been very independent, a little bit of dependence also feels rewarding. We spent more time together.When other symptoms appeared, I denied any thought of dementia, trying supplements to aid in memory retention, hearing testing, sleep apnea testing, all to avoid the reality of a life-limiting illness that has no cure and is always fatal.
New medications each time improved life somewhat and my hopes for a slow peaceful decline from the disease were raised. But when "challenging behaviors" interfered with my husband's confidence in me as his caregiver, I became angry with this disease and I had to understand that I needed help. I could not do this alone. I could not keep my beloved spouse healthy or happy as his brain deteriorated--and he knew it. This is the time families and friends are so important, but it is also the time others pull away, as some of the person's behaviors become bizarre and sometimes socially inappropriate.
Even if the loved one is peaceful, often he/she forgets the relatives' names, but do not stop visiting or inviting them; the caregiver needs your support and your loved one does indeed know you at some level, even though he/she may not be able to express this understanding verbally.

Wednesday, April 18, 2012 Science News

What stood out for me from yesterday's science news was the New Old Age blog, posted on nytimes.com which details a program now run by the Rubin Museum in Manhattan and modeled after the long existing program at MOMA, which invites Alzheimer patients and their caregivers to the museum once each month and devises a quiet, soothing,not-necessarily verbal appreciation of art.
At the Rubin, at the program  called "Mindful Connections"  the visitors are often given a small statue or a piece of fabric to hold and admire. They are shown art they need not look up to see and appreciate.
Why not request that a museum where you live inaugurate a program such as this??? Phone your Alzheimer's Association. Volunteer to help coordinate a program. Both the caregiver and the loved ones get pleasure from this exposure. I think it is important for later stage dementia folks to be exposed to art rather than to historical or science museums. I spent one winter with my husband, when he was in the earlier stages, at the Mesa Children's Museum. We had a year-long membership and he often enjoyed reading about and looking at the geological exhibits, the rocks and the fossils until he recognized that he once knew all about them and began to experience the museum as a loss of formerly known information. This is such an exasperating illness.

100 Words for Sunday, April 15, 2012

I abhor violence even when the perpetrator is a generally sweet man who behaves much like my husband did last year; he wears several shirts at once, “shops” for clothing in other folks’ rooms, used to smile at me and hold my hand as I led him from my husband’s room. “I just want to go home,” he'd say, “I could take that car,” he would add, pointing outside the window.

But he punched Bob and me and he hit several staff members in a 10 day spree before he was admitted to the psychiatric hospital. The tension is palpably reduced.

 While the above is true, the feeling of safety and comfort I previously felt about my husband’s life has been permanently modified by this experience. The tone of the staff is altered to providing what the residents need, not to engaging them in a playful, respectful manner. “I’d like to Velcro your shorts to the chair,” I overheard one worker say to another wanderer. Or, “I gave you juice before. We’re eating in a half hour,” to a woman who forgot she drank earlier. “I went over to her and asked her what she wanted, but she didn’t say anything,” as another worker returned from the circle of lounge chairs to hide behind the kitchen counter, logging something into the computer. Where are the dolls, the balls, the staff with a playful spirit? Where is someone sitting to read to the people, to interact with them? To smile at them? To make them feel at home and welcome????

“You will have to move, I need to set the table for dinner,” spoken to two women engaged in conversation with each other at 3:45 in the afternoon. When the worker achieved his goal and the women wandered off, he placed forty empty glasses,  20 napkins and silverware on the tables, only to have them rearranged by another resident, for his own internal reasons.
For the staff, the work has become a chore; for the residents, the place has become merely a wait station, for me, reality has reduced my naivete.www.facebook.com

Visiting at the Care Facility-Saturday, April 14, 2012

I spent a lovely hour yesterday after our support group meetng, sitting outdoors in the shade with my husband and two other residents of his memory care unit. Bob sat quietly, with his eyes closed, holding my hand, as I chatted with Thelma and Bill. We spoke about the different trees, the clouds and the blue sky. Thelma told how she was born in Oregon and was interred during the war, due to her ethnic origin. Well, she didn't say that part. She did say "It wasn't so bad. I was a child and had my family with me."
Bill remembered he was born in Eastern Montana, and left there as soon as he finished high school."Not much there," he rememered.
 He knows he's been married a really long time, and reckoned he is 84 or 88 years old. Bill asked me how long we've been married; when I answered him, he was amazed at how quickly those numbers came out from me, while he has such a hard time remembering. "But," he said, "I take one day at a time, take life as it is."
Then Bob opened his eyes and said, "Let's walk." So the four of us went for a walk and then we reentered the building, sitting for a while in lounge chairs  waiting for dinner to be served.

A Humbling Experience Thursday, April 12, 2012

As I attempted to make medical appointments for myself this morning,"Excuse me, I'm sorry, I didn't understand what you just said," I stumbled over and over again as I found myself asking the appointment schedulers to repeat themselves, and when they did, I realized each was confirming the information about me already on their computer screen. Am I no longer capable of understanding familiar speech?
Is this how my husband who has Alzheimer's disease hears the world with people talking at him, asking him questions and he not able to process the information? It's not often we get to experience the world as others might. I for one, go about my business confident that the information I hear is processed correctly and my responses are appropriate to the task at hand.
It is an amazing recognition, an opportunity to be empathic to the needs of others. And we don't even need to be disabled, hearing impaired or demented to share this confusion.
All we have to do is to move to Arizona or any other part of the country away from New York and try to understand the rapid pace of the city from afar.
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Tuesday's science news April 10, 2012

The burnt-on black remains of pot roast gravy that my electronic self-cleaning oven missed got an extra strong scrubbing this morning between my reading of the articles in the science section of the New York Times. I scrubbed and scrubbed to release some of the tension I absorbed from the articles I read.
The first is a well-written example of unbelievable stress. Celia Watson Seupel, a live-in caregiver for her 93 year-old mother, writes in an Essay titled, An Incomprehensible Loss, Even Without Dementia, how concerned she is with her demented mother's understanding of the suicide of her college attending grandson, the author's son.
The second is Jane Brody's Personal Health article for this week, titled Caregiving as a ' Roller Coaster Ride From Hell,' wherein Jane Brody writes that "caregiving, after all, is a wife's expected role" which most "accept as a duty that offers precious time to express love and wishes, settle financial matters, and right past wrongs." She quotes from a new book by Diana Denholm "The Caregiving Wife's Handbook" and lists a bunch of advice do's and don'ts that are so easy to prescribe and so impossible for a spouse of an Alzheimer's diseased spouse to understand, act upon, feel free or able to do without emotional support from others who are or have experienced similar circumstances.
For example the first one is "Don't let your husband take advantage of you or be abusive in any way."
1. How? Confrontation doesn't work. You can't leave the man alone. He's perfectly fine when others are present.
2. To whom do you turn for help? Your children who live far and wide? your grandchildren who will forever alter their memories of Grandpa?
3. And if you do let your husband shout at you, and feel badly about the verbal abuse, often sexual in nature or about stealing money, now the author wants you to feel guilty about not fighting back??
Readers, please beware of gifts of advice from friends, relatives or professionals who are not walking in your shoes. Please get support as soon as you hear the diagnosis, from others, online and in person, who are living with situations similar to yours.
The oven door is shining!

100 words for Sunday, April 8, 2012

It’s Saturday night and I’ve just returned from the second Seder, full of wine, food and good feelings. I love Passover, the cleaning, the cooking, the melodies, the story of Exodus repeated, forever connecting me to my People and our past. I hosted eleven family and friends last night; Laurel and I made a pact. She would not bring food to my Seder and I would relax at theirs. It worked perfectly. Last night was a child-friendly event, tonight just adults having serious, traditional fun, celebrating that famous tenet of Judaism—they tried to kill us, they failed, let’s eat.

And today I am so tired from all the feasting, cooking and cleaning, I spent the day reading the New York Times. If you get a chance, read the Review section. There are several deep articles about religion, the future of our democracy in the world, parenting in France and here in the US and even opposite gender friendships.Lots of food for thought.

I found my husband's  eyeglasses yesterday which had been missing for ten days. Someone at the memory care unit had "returned" them to his bookcase, where I had looked every day. Unfortunately, they are without temples, vandalized. So, either we will be able to replace the temples or the optician will be able to read the prescription from the lenses and make him a new pair. He needs the transition lenses he had, as he forgets to remove the sunglasses I brought him when he re-enters the building and then cannot see where he is going.I so wish I could bring him home where he has his own belongings, his own food, but he would not be comfortable and his need for constant attention 24 hours a day could not be met.

Tuesday, April 3, 2012 BookExpoAmerica

I have very exciting news today. I have signed up to be an exhibitor at BookExpoAmerica, where 20,000 book publishing, writing and affiliated media people will have the possibility of seeing my book and where, hopefully, I will find a distributor! Check out their website bookexpoamerica.com--it's rather overwhelming, so much so that I didn't get this post written on Tuesday.
I spoke at Fountains of the Sun active adult community yesterday about the legal paperwork everyone needs to have in place while we are healthy, especially for snowbirds who need to see which documents are valid in which state, the definition of Alzheimer's disease and how it differs from dimentia, the ten warning signs or symptoms of Alzheimer's disease and answered the questions of audience members.
In the news, my heart is filled with sorrow for the family members of Charles Snelling, who killed his Alzheimer diseased wife and then shot himself. I understand the stress he was in, and I even understand how he might have wanted his wife's torment to end and then his inability to cope with the grief ending her life caused him, but really now, all of his family members will feel guilt and responsibility for not having done more to help their parents and grandparents. What he did was so wrong; our society really needs to rethink how we handle aging, how right Hillary Clinton is, but not only for children. It takes a village to support aging relatives as well.

100 words for Sunday, April 1,, 2012

I am walking early before the sun heats up the valley. Today’s snapshot looks too idealized to be real. The sky is a robin’s egg blue. Above the jagged horizon of individual mountains at disparate distances sits a straight delicate lacy row of puffy clouds, equidistant, it appears, from the sun. The desert below is dotted with flowering barrel cacti (red), yellow daisy-like bushes proliferating among white flowering bushes close to the ground as saguaro cacti stand sentinel, their heads adorned with flower buds. Birds sing, squirrels, chipmunks, gophers scurry from the hole-covered desert floor. Where are the rattlesnakes hiding?
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I recently discovered a special kind of care for Alzheimer's disease patients. Hospice is designed to provide comfort and support to individuals and their families facing  a life-limiting illness. When curing a serious illness is no longer possible, hospice care offers a compa ssionate alternative. This type of healthcare focuses on caring and comfort, not curing. Hospice care is  family centered, utilizing a team approach to care for the variety of needs. I was introduced to the folks at East Valley Hospice a team of physicians, nurses, social workers, home care aides, chaplains, bereavement counselors, and volunteers who work together to provide  comfort and companionship to patients and their families.Staff members are available at all times, 24 hours a day, 365 days a year. It is the mission of the Hospice staff to walk side-by-side with patients, offering support for medical needs, as well as emotional and spiritual needs. This support extends to family members as hospice helps them cope with their own unique emotional and spiritual concerns. East Valley Hospice recognizes that every person's experience will be different. The hospice team creates a plan of care according to the needs and wishes of each patient. At Arbor Rose Senior Care, the hospice worker will bathe Bob twice weekly, noting any bodily issues  which may need to be reported to the nurse who makes weekly visits. Through Medicare, the hospice  will order Bob's medications, eliminating the need for copays for any prescription directly the result of his diagnosis.They will coordinate with Bob's nurse practitioner who arrives once a month to see if any  medication changes are required. There will now be more people concerned with my husband's care and more folks for him to choose to interact with--or not.  Whether your loved one is at home or in a facility, contact a hospice agency  near you to see what services may be available to your loved one who has a life-limiting illness. Help is available, but we caregivers need to access the  assistance and share the benegits we find.

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