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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