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Saturday, March 30, 2013

100 words for Sunday March 31, 2013

The blond Lab scampered across the street on his way to the park with a stick in his mouth and his owner by his side, totally unmindful of the fact his right hind leg is missing.The woman entered the uptown 104 bus. She wore fringed calf-high boots over jeans, a fake sheepskin jacket almost hidden by long grey curly hair. On her arm, a carpetbag and in her hand a plastic white cat carrier, or so I thought. When I got a better look, it held a green parrot! People watching in the Big Apple offers great diversity.

At the airport I had a similar experience of diversity. In Newark when I landed, I was struck by the fact that everyone was dressed in drab black, gray or brown colors, the only bright color was the chartreuse safety vests with orange stripes of the security personnel.However, the shades of color of the people were varied. When I left Arizona, the airport was filled with people wearing brightly colored clothing, but the skin tones of the people had little variation.

What does this tell us about our country? About discrimination, acceptance of people who look or act differently from the majority? I am very proud of our country because , in the space of my lifetime, we have begun to be more inclusive of all people. We have a long way to go but we are moving in the right direction. Let's let this holiday week stretch for us to work for freedom not only for ourselves but for all people. Not only religious and political freedom and equality, but financial freedom as well, so folks who are willing to work and to better themselves can attend school and earn a decent wage to support their families.

Unending Questions March 30, 2013

Everywhere I go with old friends I meet new people, friends of my friends. Over dinner or a cup of coffee we get to know each other and the fact of my respite visit and my husband's diagnosis of Alzheimer's disease is revealed.
"Please help me," one woman held onto my forearm. "If I were a good sister I would go to Texas and find my sister a place she would like, right?"
"I have such a hard time speaking to my Dad on the telephone," a man began, "How can I keep in touch if he can't speak to me?"
"I really don't know if my Dad has Alzheimer's or not. His wife keeps everything quiet and says they don't need any help. What is my responsibility?"
"My Mom passed away from Alzheimer's last year. I was so devastated, but I'm doing better now. I know what you are going through, but I still feel guilty for placing her in a residence that last year. Was I right to do so?"

There are so many people whose lives are touched by this devastating illness and so many more folks my age who will be caught up in it within the next ten to fifteen years. The people I 'm meeting are not caregivers right now, but they either were caregivers or expect to be caregivers in the future. They are making plans for long term care insurance, getting wills and powers of attorney and medical proxies signed so of they are the ones needing care they will have their wishes known. One family attended a day long conference at Hunter College about Alzheimer's disease, "Just in case."
It doesn't hurt to get informed, to share your information with others, to raise awareness of Alzheimer's disease and the difficulties for the families.

Tuesday, March 26, 2013

To Tell or Not to Tell Tuesday, March 26, 2013

First let me wish all my friends and family for whom this blog is intended a sweet and celebratory Passover and Easter where we rejoice in our freedoms and strive for enhancing freedom for all who are still bound by political, economic, racial or gender discrimination.

Next, to all of my fellow caregivers, families and friends, more about family celebrations with Easter coming this Sunday and visits occurring with and without our loved ones who have dementia or Parkinson's or Alzheimer's disease which robs them of the social niceties they once observed---or didn't.

What to do when a loved one, or a young child says "I want to eat NOW?" or who decides to leave the table just as another guest is telling a very interesting story?
What do we do when a loved one uses fingers to eat non-finger food? Or helps him or herself to food from someone else's plate? Be prepared that these events may happen. Give the person food when he or she needs it, on a safe non-breakable plate and able to be picked up with fingers or already cut into bite-sized pieces. Let him or her wander where safe, perhaps assigning someone to watch where he goes.

I am not with my husband this holiday week; I did not tell him I was leaving for New York. I thought he would not remember, although I knew he would miss me.

He said nothing about me the first week as my son reports to me daily, but yesterday a worker passed by from another unit, said "Hi Bob, How are you doing?" and Bob answered, "My wife's name is Phyllis and she is NOT here."

Steve of course said,"You're right, but she'll be here soon,"

And then he told me.

We are as proud as parents with a precocious child when my husband speaks clearly and we are happy that he still remembers me, but it makes me sad that he cannot remember that I will return.

Sunday, March 24, 2013

Sunday in New York for Respite March 24, 2013

Thanks to the wonderful care my husband receives at his Alzheimer's disease memory care center and thanks to my son and to my husband's son who was in Arizona this week, I am able to spend some time for myself, visiting old friends, going to concerts and to museums and just doing for myself.
All caregivers need some time to regroup, to think of other things than caring for loved ones who are ill with Parkinson's disease, dementia or Alzheimer's disease. I feel blessed to be able to visit the city my husband and I both loved for so many years.
Everything here reminds me of fun times we had before he lost his memory and his sweet personality to Alzheimer's disease. I walk in our old neighborhood wanting to tell him of the changes that have occurred in the five years since we have been in Arizona.
I eat at our favorite restaurants, at our favorite tables with our friends who ask about my husband.
How do I respond to these questions? "How's Bob?" they want to know."Did he come with you?" they ask. Some will ask concerned, "How IS Bob?"
We are all afraid Alzheimer's disease will catch us and my friends are concerned for their loved ones as well. My younger friends share with me the stories of their relatives who are "beginning" to change, parents who repeat the same stories every time, or have difficulty speaking on the telephone. Some who wish to remain independent and live alone who refuse to wear a health alert pendant for example.
None of us knows what will happen in the future The best we can do is to take care of ourselves today and have a bit of fun once in a while. Now it's my turn.

Sunday, March 17, 2013

e want meds sooner? March 17, 2012

Announcements were made today and emailed to me by several people. The rules have been loosened to permit the development of medications to stall or prevent Alzheimer's disease before symptoms occur or soon thereafter. The proof of effectiveness of the new medications will be improvements on working memory tests rather than on activities of daily living, which deteriorate quite late into the progression of the disease.The good news to compare this rules change to is the notification this week that the medications that control AIDS, when given really early after a diagnosis CAN and HAVE cured people.

Of course there are no such medications available today. For now we simply must change our eating and exercise habits, participate in challenging and novel intellectual activities and be as aware of our aging brains as we are of our aging bodies.

While fear of Alzheimer's disease is causing many baby boomers and older adults great anxiety, will taking more medications ease that fear? Will anti-dementia meds be the new Prozac?

Would this be good or bad?

For me, this is a wonderful new ruling which I hope authorizes the release of new medications quickly. Although books like The Prozac Nation showed the pendulum of public expectation of happiness to soar, and consequently some forms of depression to grow, the creation of SSRI's, which include Prozac and Paxil and others, has helped countless people to live productive lives less encumbered by depression and anxiety. The hype passed.

Perhaps anxious adults will take the new meds before they are needed, or even without any basis because the tests for cognitive decline are inconclusive at best, but the availability of a cure before too many tangles and plaques kill our memories is a marvelous event to anticipate.

Tuesday, March 12, 2013

The Larger Role of Memory Tuesday, March 12, 2013

The Wall Street Journal'S Health and Wellness page highlights "The new power of memory" today,concentrating on episodic memory, the ability to remember past events and studying how recall may be related to imagination and creativity.
"The ability to imagine or anticipate what may come is important to our ability to plan and problem- solve and helps us make better decisions in social situations."

Most work on memory training, word games and puzzles, focusses on working memory, the information we hold in our head at any given time.There are no studies which show that increased skill in these tasks transfers to any other kind of memory skill.

But this work on targeted episodic memory, remembering past events and specific details about people may help people plan better for the future.This episodic memory decreases with age and older people will often veer off subject when asked for details of an event, shifting to why the event was important for them.
The authors think that this decrease in planning ability, the difficulty in seeing what's ahead, may contribute to older folks making risky investments or to their ability to get conned or scammed.
The testing requested that folks study pictures of people and then predict how they would handle different situations.
Since people with dementia often begin their decline with judgment and decision-making difficulty, this training in recognizing facial expressions and predicting how they would handle future events may improve a set of skills that have the potential for helping older folks make better decisions for themselves and for their loved ones.

Saturday, March 9, 2013

Communication Sunday, March 10, 2013

It used to be frustrating to try to hold a conversation with my husband who has moderate to late stage Alzheimer's disease. As his caregiver, I would ask him to do something and he would not comply. I learned to do more for him, finally understanding that his non-compliance was not willful, but his inability either to understand what I was trying to say, or to do what was asked of him.
For example, I would tell him it was getting a bit chilly outside,please put on a sweater or a jacket before we go out. He would say no, it's not cold.
I would say it's not cold in here, but it is 62 degrees outside. He might argue or walk out.

Now I pick up the jacket and hold it. When we get outside, I wait for him to say it's cold. I help him put on the jacket and off we go for our walk. Simple, right? It took me a long time to learn.

Why did it take me so long to learn something that sounds so easy to accommodate?

I did not want to reduce my expectation that my husband COULD understand what I was saying. I did not want to do more for him than he needed me to do, feeling he was taking advantage of me by being argumentative. I wanted to see my husband as healthier than he was.

One day my husband was given a box with four chocolates inside. He opened the box, smelled it and said "chocolates." He smiled, but he did not take a chocolate from the box. He put the box down. Later when he had a glass of milk, I took one chocolate from the box and placed it on a napkin next to him. He ate it and smiled. That was good communication.

Thursday, March 7, 2013

Prevention Ideas Thursday, March 7, 2013

Harvard Studies reveal again today what we all know. Exercising one's brain is just as important as aerobic exercise in preventing plaques and tangles from forming. But we also know that my husband exercised his brain 24/7. He had more hobbies, carpentry, reading, sewing, collection of cookbooks, cooking new recipes, in addition to attending museums of history and art all over the world --- and without any known family history, he has Alzheimer's disease.

Scientists do know more these days about what the brain is made from and they recommend, beginning in middle age, that folks add fish oils, omega 3's and DHA plus coconut oil to their daily regimen, increasing the doses as we age. First they prevent, then they can help the brain repair itself.

Of course this is in addition to cleaning up our food intake. Science is now validating the Mediterranean diet--plenty of fresh fruits and veggies, fresh fish and small doses of non-GMO meats, plus small amounts of good not processed cheese.Plus of course olive oil and iodized sea salt.

Most of the Italian-style food in our chain restaurants is smothered in marinara or alfredo sauce and covered with parmesan cheese. Not in Italy. Most sauces are made of olive oil, lemon juice and fresh herbs with a bit of wine.

Let's reduce the incidence of Alzheimer's disease for the next generation--everyone who is younger than the BabyBoomers and let's help ourselves who are older nourish our brains as well as our bodies.

Wednesday, March 6, 2013

Who Decides Right from Wrong? March 6, 2013

As caregivers for elderly or ill parents, siblings or spouses, our obligations do not end when our loved ones move to a care facility. We attempt to insure that their wishes are written down and that their needs are met.
How do we do this? How can we do this for ourselves so we are not dependent on others to guess what we wish for ourselves?
I know the first step is to be willing and able to discuss end of life issues within families. This requires lifting the unspoken ban on talking about death. Medical science, healthful eating and exercise have all increased our lifespan, but end of life will come--at old age during restful sleep--we all hope.
So let's assume we have future directives in place. We have wills and or trusts for after our lives end, we have medical proxies and living wills for decisions to be made if we are not capable of participating at that time.
Who decides whether or not to follow our requests?
I am concerned about the 911 operator calling in response to a possible heart attack call that was not received from the patient, but from another resident or an administrator at a facility.
If the person who had the heart attack did not wish to be resuscitated and had a written authorized request on file, no one has the right to do anything but keep the patient comfortable and safe.
The medical profession has the obligation to do whatever is necessary to keep us alive; they can be sued if they don't. But we have the right to determine that we don't want that intervention.
And if we have isued in our behalf, a Do Not Resuscitate Order, no 911 operator has the right to countermand that order.
Check out the credentials of any housing facility you pick for your relatives or for yourself. Provide them with all of your paperwork and trust they will follow the protocols that protect our lives and our wishes at end of life.