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Saturday, October 29, 2011

Saturday, October 29, 2011

I always grapple with what’s below the surface, in my thoughts, in the news headlines, in the content of what I happen to be reading. Having just returned from a visit to the Grand Canyon, Zion National Park and the San Francisco Peaks, of course I am more than ever aware of the insignificance of each of us and all of us in this vastness of earth that surrounds us here in Arizona. We also visited Sunset Crater, which is less than one thousand years old and indicates anew that volcanic eruption will continue in the millennia to come.

So why worry? Be happy, as the annoying song goes, “Don’t worry, be happy.” Smiley faces abound, yellow and cheerful. I had a wonderful time, a unique experience, and a new experience to be away from home without Bob. I am so fortunate that Steve is here to visit when I am away, giving me a sense of freedom I would not have, had we remained in New York three years ago and not purchased our home in Arizona.
What is also amazing is that had Bob and I visited Zion National Park by ourselves, my experience of it would have been severely limited. I saw the Tauck Tour buses roll in to the Lodge and disgorge their mostly sedentary tourists who had three hours to eat lunch and to walk the two- mile- paved riverside trail which requires no extra clothing, hiking shoes or other equipment. We might have been among them when we tired of European travel someday. Again, because we moved here, I walk more, I train more frequently at the gym and I am in sufficient physical shape to clamber up the switchback trails on a mountain! Life changes, life changes me and the result is not at all completely negative; it’s just so sad that Bob is ill

Wednesday, October 26, 2011

Tuesday-Wednesday October 25-26

An article in the NY Times this weekend spoke of the Class Act 's failure. This bill was supposed to provide some relief for the millions of middle class families caring for  chronically ill or demented family members, at home, due to lack of insurance coverage or sufficient funds to pay for out of home placement. The bill was first proposed during the Clinton Administration and it seems as if noone has been able to figure out how to pay for this needed insurance. The article reported that less than 3% of people have long-term care insurance. Couldn't a plan for promoting long-term care insurance that is currently available meet that need??
Why don't people buy long-term care insurance? Families provide life insurance for each other, probably for the benefit of minor children, should an early death intervene with savings plans. Couples invest in 401K or 403B savings plans to provide for their retirement, but we don't think long-term care. If one member of a couple becomes disabled and the family is neither super wealthy nor poor enough to qualify for federal aid to the poor(medicaid), the illness could and does deplete the savings of both partners. I guess then the surviving spouse gets his/her nursing home care paid for by the state.
Which is fine, if the surviving spouse survives and develops a handicapping condition. What happens when the surviving spouse is healthy? Then he/she becomes a burden to the children if there are any who are able to provide.

Sunday, October 23, 2011

100 words for Sunday, October 24, 2011

We visited the Desert Botanical Gardens one year ago today, viewing the agaves, aloes, ocotillos and the prickly chollas, the miniature cacti and the magnificent saguaros that live to 300 years. We wandered among the desert wildflowers, attended a lecture on Alzheimer’s Disease, lunched on the patio where Bob fed my pita, but not his hot dog bun to the birds who landed by his feet. “A wonderful day,” exclaimed Bob as we leisurely followed the red path to the “salida” (exit). I remember an Oscar Wilde quote:  “I adore simple pleasures—they are the last refuge of the complex.”

What a difference a year makes.When we go to feed the ducks at the local park this October day, Bob is annoyed that there are children present, riding their skateboards and scooters. He tires easily, perhaps physically, but what I see mostly is an inability to sustain attention. He wants to go for a ride in the car, he enjoys looking at "tools" at Home Depot, or Lowes, but he is always glad to return to the assisted living home where he feels safe.




Sunday, October 16, 2011

100 words for Sunday, October 16, 2011

At the gym, Debbie, an Iron Maiden competitor in her spare time, drives us hard. 50 reps of each move on one side before we switch; singles, holds, pulses and singles again. Standing in the front row, I watch the others in the mirror. Without groans or facial grimaces, they comply. At the water break I go to lighten my weights, and say, “Next time I’m going to use only one riser.”

“Go do it now,” Debbie answers, “Anyone who wants to lighten their weights or drop a riser, go do it now.” I’m amazed at how many switch. Why?

Did my example influence the others? Were they complying with requests above their ability because they thought it was expected of them, did the instructor's permission to lighten their weights carry the weight, not me at all? Or did my example lower their own expectations of themselves? Lighter weights are easier to manage after all.We all have to be aware of the reasons for our behavior. Are we following some leader blindly, regardless of our own best interest in order to please someone either in charge or in power?
The nurses at Walgreen's arrived at the assisted living community yeaterday to give everyone flu shots. I had signed permission for my husband to receive his flu shot from them two weeks ago.Bob however, was not going to follow along. He refused. When I arrived later in the day, he told me,"Real doctors came and tried to poke me with a needle but I said no, 'my wife and I do these things together.'"
Good for him. The little spark of Bob that remains is vital to nourish. I will take him to our regular physician's office one last time, for a flu shot. I also asked him of he would like to visit our dentist for "our" regular checkups, to which he agreed--today at least.

Thursday, October 13, 2011

Stress and that which stresses us Thursday, October 13, 2011

As I sit in a doctor’s waiting room, I see a copy of AARP magazine. I never joined this group, since they started soliciting my dues when I turned fifty. Then I felt that nothing within the magazine had reference to me. My father had died, but my mother was healthy and vibrant. Today however, I appreciated each article and the ads as well. One spoke of Alzheimer’s disease and the many articles about the disease in the media this summer. A poll showed that many folks think there is a test that will tell them if they have the disease. Many more feel that early testing will provide medication that would be helpful for them.

The article reiterated that both feelings are so far, false. There is no definitive test available today that can diagnose early stage Alzheimer’s. There are merely the mini-mental tests, the MRI’s, the questionnaire that have been around for a while, which many neurologists feel are sufficient to diagnose Alzheimer’s disease. In my experience with my husband, they were unwilling to diagnose him with Alzheimer’s disease until he reached the Moderate stage. Earlier the diagnosis was Mild Cognitive Impairment. Before that, the first neurologist told us “It’s probably some sort of dementia.”
The medications that are so far available delay the process of the disease for a few years at best, but no cure is available. There is much work that needs to be done. Only in clinical trials are some people able to be diagnosed early and some will participate in testing new and promising medications.

So when I worry about my own forgetfulness, when my friends recall their memory mishaps, we are still left with self- diagnoses of stress and we tell each other to slow down, take it easy, reduce the stress and enjoy life. It works—until the next time we misplace or forget something meaningful.

Wednesday, October 12, 2011

Tuesday-Wednesday, October 11-12- Supplements

 When my husband first noticed he was becoming forgetful, I discussed the topic with my friends, one of whom suggested I read a book about memory. I read Dr. Weill’s book and had Bob take the tests at the end of each chapter. The results of the tests indicated which supplements Bob needed, so we ordered the supplements and for a whole year, Bob took seventeen pills each day to help him remember to empty the pan under the boiler, to put Rid-x into the toilets each month and other routine homecare tasks which he had been doing for almost 40 years.
I decided to take some of the supplements, too. CoQ-10, vitamin e, a multi-vitamin with minerals for those 50 plus were on my list, along with the calcium and fiber. Neither one of us noticed any difference, none of our physical exams showed any changes as we didn’t have vitamin deficiencies because we eat a healthy diet full of fruits and vegetables, even though Bob never liked whole grains and preferred white bread and white rice.
So now two studies out this week begin to indicate that vitamins and supplements which are not needed to correct a deficiency, do nothing to support good health and in excess, some might even be harmful. We all need to check with our physicians and see what we can eliminate from our daily doses of supplements as we increase our intake of fruits and veggies.

Sunday, October 9, 2011

100 Words for Sunday, October 9, 2011

After spending many hours at the synagogue, I feel cleansed, surrounded by new acquaintances who seem willing to become friends. During a break, from one o’clock until four, I visited Bob. When he saw me he said, “I feel rewarded when you are here.” As it was a temperate day, we walked, holding hands, to the strip mall near his home. At the thrift store, he found a pair of shorts in his size for $5.99 and some plastic hangers for sixty-nine cents. At the register it was fifty per cent off day, so the items totalled $3.69. Successful day.
And another 100 words for this auspicious day:
I enter the meeting room and look to find a seat next to someone I recognize near the front. Seeing Marion, I join her and explain my reasoning. She says, “I always like to sit up front; I feel more connected here.” So do I. The feeling I have is one of belonging, of being a part of an experience, not merely an observer or an audience member. I am replacing my beloved, demented husband with strangers, other single women my age; all have had losses and live with their memories of past years- daring to hope for the future.

Looking toward the future, finding some space to have fun, reducing that feeling I carry with me that I have to be busy doing important work so I don't feel guilty that I am not spending my time with Bob is my goal for this year.
I am at the home with Bob for two to three hours twice or three times each week, yet every time I sit to read, or just "do nothing," I feel I "should" drive over there. "It's only 10 minutes away" my brain says, or "He'd really like some of this fresh fruit." In order to get myself out of that frame of mind I have had to get up and DO something productive, which is stressing me. My digestive system is warning me; change or suffer the consequences. Other members of my support group have similar feelings; one woman removed her husband from his assisted living placement and has him back home on his "promise" to be more civil.
Of course the meaning of all this is once again finding the balance between self- regard and regard for others, work and relaxation, being productive in helping others in our communities, within our families and within ourselves.

Wednesday, October 5, 2011

Tuesday-Wednesday October 4-5 Altruism

Here’s a topic that’s been lately in the psychological press. My information  comes from Tuesday’s Science section of the NY Times. The article, entitled The Pathological Altruist Gives Till Someone Hurts, speaks about helpfulness going too far. It speaks about selflessness going too far as well. The example of helpfulness going too far here is related to performing surgeries and other invasive procedures on patients who are near death or otherwise incompetent.
Of course my association is to Alzheimer’s disease patients or those suffering from other dementias. What is the right thing to do if a loved one incurs a stroke or heart attack and the physician recommends a spinal tap or open heart surgery? Do we caregivers always follow what the surgeon recommends because “there’s always hope?” It is so important for families to discuss these matters when everyone is well. Then a medical proxy can be drawn up that details in advance what the person desires for his/her end of life .
If there is no such document or if there hasn’t been such a discussion, the other half of this article on helpfulness going to far comes into the discussion. The example in the article talks about people who hoard animals, women who continue to live with abusive husbands or men who tolerate alcoholic wives. In my experience with people I have met and interviewed in caregiver groups, it also can apply to those who continue to care for their demented spouses at home, by themselves, until they become ill or even die. A lifetime builds up behaviors that are so difficult to change, even when the circumstances lead to the severe problems for the caregiver. That’s why it is so important to belong to a caregiver group, to hear how the other members handle similar situations, to learn to follow the Alcoholics Anonymous motto which asks for our Higher Power’s assistance in changing what we can change, accepting what we cannot change and in knowing the difference.    

Sunday, October 2, 2011

Sunday October 2,2011 100 words

Paper can be lovely, from delicate to sturdy, in colors and textures, but when stressed, i.e. by water, it disintegrates to pulp; facial tissue and paper towels however, have been treated to become stronger when wet. Which do I want to be?
When I am stressed by life, I carry on, the “quicker picker-upper.” But often, the price I pay is a strain on the relationship when a person stresses me; I erupt with a hurtful comment, which then brings a rejoinder comment. The immediate pressure is reduced, the request is withdrawn, but I feel guilty later and give in.

The stresses of a spouse whose loved one resides in a facility are similar to the stresses of any family members who deal with someone they love who is challenged in some way. The show on TV called Parenthood  showed how stressed the mother of a boy with Asberger's Syndrome was, as she waited for the teacher in his new mainstreamed class to return her email. We want what is best for the one we love, but how much control do we need to surrender? How do we let the "little things" go and maintain positive connections with the immediate caregivers?
Bob was thrilled to see me, both on Wednesday and on Friday this week. He was actually standing by the door when I arrived. "Phyllis," he asked, "we're married, right?"
"We sure are," I replied, giving him a hug and a kiss.
"So why can't you live here, where I can see you whenever I want to, and hold you whenever I want to?"
He was dressed appropriately, he sported a new haircut and was cleanly shaved.But when I saw his room, he had no toilet paper and his closet smelled foul. When I chatted with the medical technician, she informed me that Bob was still ordered to take several medications that the nurse practioner and I had agreed we could eliminate or reduce.
Knowing myself, I struggled with my tone of voice as I spoke with the care manager, but try as I thought I did, she still sounded defensive.
Friday afternoon, Steve and I took Bob to Wal-Mart, which he loved. Bob chose a ceramic replica of Casper the friendly ghost which we gave as a peace offering to the care manager.