Tuesday Science News May 1, 2012

Happy May Day everyone. I have happy news to report for all of you who know someone afflicted with Alzheimer's disease but do not have direct possibilities of contracting the illness yourselves.A report in the April 24 issue of Neurology, printed in today's N Y Times Science section reveals once again that physical activity is associated with a decreased risk of Alzheimer's disease. The subjects were cognitively healthy seniors, average age 82. The first good news is that in this sample only 10% contracted the disease during the four year study.
The study's point hoever, is that those in the lowest 10% of physical activity  were more than twice as likely to develop Alzheimer's disease as those who were physically active.So once again, please avoid the tendency to be couch potatoes and walk--park further away from the store; every kind of physical activity counts to keep those neurons reproducing and keep that blood flowing so the blood vessels stay open!
My husband however, never liked to exercise. When we moved to the city, he walked a lot, but he was already in his 70's and more comfortable in a library or a theater than outdoors.
Speaking of the city, I have to share how wonderful my son and my friends are, visiting Bob in my absence. When asked by Sue if he sees his wife much, Bob answered "A bit." So he's not missing me, he's active, he's well cared for and I am truly blessed by an excellent Arbor Rose Memory Care facility and a super support group. When asked by the staff if Steve was my substitute caregiver, he replied, "I am the caregiver's caregiver." Who could ask for more???

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.