Caring for Aging Parents

Good morning friends. I have successfully uploaded  Put That Knife Away on Kindle. I have been getting great feedback from those of you who have now recieved the paperback edition from amazon.com. Now you can read it on your e-readers as well.  If you like the book, please review it for me on amazon. Read the two reviews that are now posted.
The NY Times Sunday Review  opinion article "Bargaining for a Child's Love" by Hendrik Hartog suggested that families are not doing the physical work of caring for their parents any longer. He also talks about the institutions and beaurocracies that caregivers struggle to deal with. His question is "Aren't we better off now, than we were before?"He suggests that parents formerly bargained with their children to stay home and care for them by promising them an inheritance- the house, the farm, the store, the bank account.
However, at least 21 percent of the nation's 48 million caregivers do clean bedsheets, change diapers, and help parents into the bathtub.Caregivers also manage complex medications, arrange and take their loved ones to medical appointments, manage their financial affairs. Many middle class families find themselves on the 'sandwich generation' caring for their children at the same time as caring for their parents.
Most insurances including Medicare do not pay for "custodial care." Private pay is extremely expensive. And unfortunately, families still argue about this care, about inheritances, financial and sentimental, real or imagined.

Tuesday's Science Post for January 17, 2012

Exit Left, Wordlessly is the title of the Modern Love column from this Sunday's NY Times. The column runs every week in the Styles section and it is usually the first section I pick up to read. Just as I admire well written 100 word stories, I admire these 1500 word articles which tell a complete story and pack a punch.

This week's story discusses the author's dilemma when not one, but two love relationships end with the man leaving suddenly and unexpectedly. Trying to undersatand how someone could be so kind, loving and generous and then leave without an explanation sends her to compare the men with Donald Draper, the lead player in the television show Mad Men. A review the author read  describes Don as "The master of the pitch. someone who likes only beginnings and not what happens next." Her next attempt to fathom these events led her to an area of interest to those of us who are caregivers to Alzheimer's diseased partners or parents.

Although she does not mention the author or the title of the book in which she found her answer, the author reports the discovery of a "new" term, at least for her. AMBIGUOUS LOSS. This term is used to describe a death in which there is no body to bury or a spouse who "vanishes into Alzheimer's disease while still alive." Ambiguous loss is unfinished business, the author writes, without closure or understanding.

One of the women in my support group, Jean, lost her husband to death last week and she feels as if she has done most of her grieving already and that his demise is a blessing, a release from mindless suffering. She loved him dearly; she has closure and understanding.

100 Words for Sunday, January 15, 2012

Being good to myself changes. Some days, including Saturday morning, being good to me meant being active, registering voters, going to Temple services, speaking with others about my new book. But then my body made me rest. In the afternoon, I sat down to read and promptly fell asleep for several hours. I revived and watched the Gloria Steinem interview program I had ‘previously recorded.’  Never before had I realized she is only four years older than I. Ms. Magazine, Bella Abzug and Betty Friedan were my role models in my development as an adult woman. Women’s liberation, right on!

Back then, I needed new role models; my mother's way of life, living for her husband and her family and volunteering her time for good causes was unavailable to me. My husband had left me for another woman; I was raising a 12 year-old,a nine-year-old and a four-year-old by myself with few financial resources. I had to learn to see myself as head of a family, professionally trained and ready to enter the world of work.

I garnered strength from the women's movement; I joined a consciousness-raising group where we discussed our roles and our ambitions.My resilience in the face of adversity came then, as now from my grandparents' story; they survived imprisonment and exile during World War II and survived to tell the tale!. Every time I feel defeated, their experience reminds me that "I can do this."

This morning I received a call from my husband's niece; they want to visit Uncle Bob.Tomorrow we will visit together. I am so glad they are interested in visiting with him and meeting me. This road is a lonely one.

Wednesday, January 11, 2012

It's official. Put That Knife Away-Alzheimer's, Marriage and My Transformation from Wife to Caregiver by Phyllis W. Palm, PhD is now available
at www.amazon.com.!!!!It will soon be available on Kindle. Just click on the link and paste in the title!
I have been sending out emails all day, and the response has been wonderful.Here's the email letter I sent today, in case I missed you by accident. If I did, please email me, so I can be sure your name is on my list.

Dear friends and family,

As of this morning, the book is available for purchase on www.amazon.com.Just click on the link and paste in the title.

 Thanks to the many of you who have been my companions on this journey and who have participated in the creation of this story. Although it is a great triumph to write a book and publish it, it is so sad that the subject of my first book is the devastating Alzheimer's disease that has descended upon our family.

It was so important for me to write this book to help me cope with the seemingly never-ending changes brought about by this disease. It will also be extremely important for you to read it, as it contains helpful hints, ideas, tricks, advice and personal anecdote which will be useful in your interactions with other caregivers or members of your acquaintance who are experiencing issues with memory loss and personality change. You will better understand the dilemmas caregivers face, the stress on the person who has the illness and on all the family members as we grieve the loss we feel at each step of the process.

I look forward to hearing from you. Since some of the proceeds of this book will be donated to further Alzheimer disease research, I am willing to speak to groups to accomplish this goal. Phyllis

Tuesday's New York Times Science News

I can really relate to the lead article in today's paper. The timeliness of the article is in response to the one year anniversary of the tragic event in Tucson in which Gabby Giffords, a US Congresswoman, was brain-injured after being shot in the head. The subject is the effect on the marriages of partners where one has survived a brain injury and counseling techniques that are being designed to help the marriages survive. Here are some quotes from the article:
"While people may technically be married, the quality of their relationship has been seriously diminished."
"...teach uninjured spouses to forge a relationship with a profoundly changed person--and help the injured spouses to accept that they are changed people."
"...he 'flat-lined' emotionally and he suffers from depression, anxiety and a lack of motivation."
"...makes erratic decisions.." "..a lot fewer interests"
"Strangers and friends do not understand the...socially inappropriate behavior."
"Even relatives ..struggle not to take outbursts or remarks personally."
"My life is sitting in the living room quietly while my husband just sleeps."
"Guilt is the tie binding many people to a dependent stranger."
"...she couldn't say she had never contemplated leaving."
"We'll have a whole day where he's just fine."
"...caregivers ultimately received a diagnosis of post-traumatic stress disorder."
At every stage mentioned in the process of dealing with a brain-injured spouse, I would have gladly settled for their lives--only for the progression of Alzheimer's disease to stop. I gave up looking to restore my husband to where he was, I accepted him, cajoled him, enjoyed the 'just like the old Bob' moments, but they are very sparse now and soon will be gone.

100 Words for Sunday, January 8, 2012

I awaken to the feeling of light on my face. Turning left, I see the darkened hallway and nearby the illuminated face of my clock radio. Four a.m. Then, turning, I see the source of the light; the nearly full moon shining through the clerestory window of my bedroom, kissing me awake. I see that the light is limited to the upper left corner of my king-size bed, like a postage stamp on a first class letter. I choose to do what I haven’t done these past eleven months. I walk around the bed to Bob’s side and climb in.

When I was admitted to the care facility yesterday afternoon, I saw Bob interacting with two care workers in the restaurant area. He was holding an open book. Cyra says,"We can clean that. I see, it's sticky."

Anna sees me and adds,"Bob, look. Look who's here to see you." In order for her to make eye contact with Bob, she has to bend her head, as Bob has had downcast eyes for the past two weeks, ever since he fell out of bed and cut his ear on the nightstand.Finally, he raises his head, glances at me and responds, "That's my wife." He still wants the book cleaned. Cyra tries to take ir from him, gently, telling him she will clean it and put it back in his room. Hesitantly, Bob relinquishes the book and walks toward me, arms outstretched and head up.

Saturday, January 7, 2011

Today I was out registering voters. The group of volunteers is friendly and their politics resemble mine which makes me feel more at ease here in red Arizona.We were sent to stand in front of the library, approaching folks as they entered the building. The three of us registered fourteen voters in three hours, which the leaders thought was terrific. The group in my city, Mesa, registered fifty-seven total.
It doesn't matter to me with what party the registrants affiliate themselves; I am interested in a more well-read and informed electorate. By signing up for the PERVL, the permanent  early voter registration list, the voter will receive a booklet thirty days before each election, city, county, state and federal, which will not only name each candidate running for public office, but also provide a bio and list the candidate's position on the issues. Definitely a good use of my time while I await yet another proof copy of my book. The last one had errors in the cover, but the interior is perfect now.
This process feels slow; waiting and perfecting each item reminds me of the last weeks and days and hours of childbearing. I guess, in order to see change in the politics of Arizona, I will need, as much if not more, patience and diligence.