100 Words for Sunday, January 29, 2012

The man looks as if he were born with hay behind his ear; in fact his sandy-colored hair is sometimes in disarray, but it is so far above me when we’re both standing, I hardly notice. Darcy’s a new kind of Renaissance man, a t-shirt and sneakers guy whose pictures of himself in active Air Force Reserve officer’s uniform along with his photos of his lovely blond wife and three lanky children adorn the walls of his office. An R.N. by training, this warm- hugging, enthusiastic, energetic director exudes positive energy toward residents, staff and family members calmly, compassionately and with humility.

I am feeling good about Bob's move to Arbor Rose Senior Care-memory care center where Darcy is the Executive Director, which I will do next Wednesday, but frankly I've been stressed over the actual transition. I already moved in a week's worth of clothing, neatly folded or hung in his new closet. Everything is nicely furnished in a home-feeling way.Everything is provided for him, from toiletries to linens.This is all super, but how can I be with him and move his belongings at the same time? Neither Steve nor I is allowed to carry anything heavy; Bob would be too confused to observe this process.

I have just returned from dinner with everyone--Linda, Dave and Grant plus Steve --after the Pinewood Derby at the Cub Schout pack meeting today and they offered to move Bob's recliner,books  and bookcase on Tuesday and hang up his pictures. In this way, all I have to do is walk Bob across the street on Wednesday and remain with him until Steve arrives. Linda and I will then collect the rest of  Bob's belongings from his old room to bring home.
I feel so much better.

Tuesday's science news

There is so much in the news about Alzheimer's disease. The one study shows the beneficial effect of exercise for folks who have the Alzheimer's gene, so keep on walking, running, dancing and going to the gym folks as it's always better to be healthy, whether or not you have the gene. I am sidelinedfor a while by a torn meniscus cartilage and a stress fracture in my knee, but not for long.
The next is a long article which can be found online at www.amazonrepublic.com. Search for "Alzheimer's."It's the local newspaper here in the Phoenix area of Arizona. Three days ago, a staff writer named Karina Bland interviewed a fifty year-old woman who has early onset Alzheimer's disease. She eloquently describes what she feels is happening to her and to her husband/caregiver. It's the first time I have a glimpse of the subjective experience of the person who has the disease. Others have not been able to either recognize their own symptoms or cannot articulate what they are experiencing. I recommend it highly. It's just too long to reprint here.
My whole family attended the Open House for the Arbor Rose Assisted Living and Memory Care Centers which will open next week. The setting is lovely but most important, the people are so warm and caring-- for each other--before they even meet our loved ones who will be entering their home as residents. Darcy showed everyone his copy of my book and even indicated on what page his name is to be found!!

100 Words for Sunday, January 22, 2012

The cruise ship Concordia ran aground off Isola de Giglio in the Mediterranean Sea, reported from Porto Santo Stefano, Italy. I know the Italian name for the island because Bob and I were there in 1998. Abandoning a home exchange in Rome in August when the temperature reached forty degrees Celsius, we went to the beach. A travel agent found us the resort; we were the only English- speaking visitors. Ceramic plates from our day excursion to the island are our souvenirs. I wish Bob could share how I excited I feel about seeing our special places on the news.

Of course I am upset that people died and of course I am afraid to ever take a cruise, especially in the Mediterranean, but my husband and I had such a special time, exchanging our small apartment in New York for places in all parts of Europe that we enjoyed revisiting together whenever someone else in our group travelled there, or when we saw places we recognized on the news.
When a partner or another loved one dies, we can say "Oh, he/she is watching from above and knows..."

But with a living Alzheimer diseased spouse or parent, we know that they have no memory of our trips, our special moments or even of us. I drove a different car to take him the the psychiatric appointment this week; he had no clue or interest in it or in seeing the doctor. He couldn't answer any questions even "Is it day or night now?" that the doctor asked. He said nothing.
The psychiatrist validated my decison to transfer Bob to the memory care facility, reminded me that any move causes stress, reassured me that Bob's medications were at the correct dosage and shook his head sadly when I asked if reducing his medications would make Bob more cognizant or receptive.

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.