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Saturday, September 29, 2012

Remember to Vote, early or on time. Sept. 30, 21012

The first presidential debate will occur on Wednesday. As we listen, let us ask the following questions:

1. Which candidate will support Alzheimer’s research for a cure with a commitment for another 100 million dollars?

2. Who will spend money to support the 14 million caregivers of Alzheimer’s disease and other dementia victims?

3. Who will commit to providing financial relief to the often impoverished spouses of demented loved ones who need the safety and protection of residential care?

4.  Who will keep the funding for the police to find missing demented loved ones when they have wandered away from home?

5. Who will provide respite care for the millions of family members who keep their loved ones at home?

6. Who will support end of life discussions with medical and mental health providers so that families know what is reasonable to expect and what drastic measures if any should be taken at end of life?

Get educated. Listen carefully and Vote— vote in your best interest for the candidate who will support you and your family member or friend who has or may soon be afflicted with this devastating disease. It could even be you or me.


Tuesday, September 25, 2012

Science News Tuesday, September 25, 2012

I subscibe to Google Alzheimer Alerts for help in writing this blog and what I found today really intrigued me. On Maria Shriver's website, she posted an article by Dr. Stephen Hume, a psychologist who was diagnosed with Early Onset Alzheimer's disease six years ago. He describes being on a vacation and realizing his perception of sight, colors and smells has been affected by his illness. He documents how his thinking has become more linear and feels grateful that his insights about his losses are short-lived. He forgets about them!
Dr. Hume is blessed by this lack of anxiety. My husband experienced his recognition of losses due to Alzheimer's disease progression very painfully and his current peacefulness seems to reflect this loss of awareness. Now Bob says he is "delighted each time I find you here" each day when I visit and he seems to be completely unaware of the time in between visits.
As people are diagnosed much earlier, they are able to participate in their lives with Alzheimer's disease and to benefit from insights about community, family and the creativity that is still possible when some symptoms of Alzheimer's disease are already present. I look forward to reading more of Dr. Hume's writings to gain further insight into his disease progression, although we must always keep in mind that each person has an individual path through this process. What strikes me now, is how we all must realize we are loved for who we are, not for what we achieve.

Saturday, September 22, 2012

After the Monsoon 100 Words for Sunday, Sept 23, 2012

The yellow-marker painted sun pokes through the light blue construction paper sky which is dotted with cotton balls and Elmer’s glue. The desert is gouged by new canyons and washes of sandy soil, while hopeful plants show their gratitude by displaying their brightest orange and purple hues.
The desert is alive with constant change.  I see destruction by wind and rain and beauty in renewed life. I too look for hopeful signs as the seasons turn yet again. The light of recognition, a smile, the simple joy of a hand held, as the winter of Alzheimer’s lengthens.

Today was a great day. Steve and I visited with Bob in his room for a half hour with no demands, no agitation and some real conversation. We examined the picture on Bob's Popular Science magazine cover that Bob recognized as a plane that "flies out the back" of an aircraft carrier.Then my husband suggested we go to a restaurant to eat "real food." He chose his usual egg meal by pointing to the picture on the Village Inn menu, waited patiently drinking his coffee while his meal was prepared and ate every morsel. Steve and I, ridiculously perhaps, feel proud when Bob eats!
After dinner, we went to Sports Clips and both Steve and Bob had Super haircuts with hot towels, shampoo and head massage. Bob said, "I like it here. Thank you."




Tuesday, September 18, 2012

Musings for Tuesday, September 18, 2012

I waited until evening to write today, as I thought I would present news of my husband, but when I went to visit him, he was sleeping peacefully and I did not awaken him. The memory care unit was quiet as I sat and spoke with one of the members of my support group whose husband is also a resident.
I will speak about my book Put That Knife Away with a group of seniors on Thursday. The leader of the group phoned to remind me of the time and to report that two members will not attend as they recently lost their spouses to dementia and could not possibly listen to someone speak about Alzheimer’s disease. What is interesting about this situation is connected to a report I read online this week of the isolation of caregivers and people with dementia. Some folks are excluded from their social lives when a spouse changes his or her personality due to dementia; some caregivers still feel shame at having a spouse with dementia and feel guilty that perhaps they did not do enough to care for their loved one properly.
I hear similar stories every week. One woman cries that she should have placed her mother in an assisted living home sooner, as her mother was so relieved to be in a protected environment; another feels guilty that she wishes for some respite from caring. So when the caregiving ends, reactions differ. Some widows and widowers continue to attend group meetings, to share their experiences to support others and some are tired of so much stress; they want some entertainment, not another sad story. Let’s see what I funny stories I can tell this group which will be cheerful.

Sunday, September 16, 2012

Sunday Smiles September 16, 2012

Finding something to smile about is often rare. Sometimes it seems as if life is one serious event after another, but here’s a cute story. When the careworker Jennifer explained at our meeting that Bob refused the male worker’s help in showering, stating “Why should you take my clothes off? Do you want to see me naked?” and he also refused her help, stating, “I am a married man,” Bob stated, “That’s okay. She (pointing to me) is only number one. You can be number two and she (pointing to the hospice nurse) can be number three.” Sense of humor present!

A few days of increased meds and Bob is feeling much better, less agitated, eating his meals and taking a shower when asked. He is wearing clean clothes daily once again. He seems content to spend our visits on campus, wanting only to walk outside the gates for a while, to sit in the shade and to talk about the local trees, rocks and flowers. He has not asked to see tools or to go to a restaurant to eat.

Did you know that September is Alzheimer’s month and that wearing purple indicates your support of Alzheimer’s disease research? Do you know that the Alzheimer’s Association sponsors walks in many towns and cities to increase awareness of Alzheimer’s disease and that you could find one near you during these next few weeks and months? There’s one in Phoenix on November 3rd. These walks are the biggest source of raised revenue for the organization during the entire year. Check out their website to find out more information on joining a walk, finding a team or donating money.

Thursday, September 13, 2012

Moderating Challenging Behaviors--Sept. 13, 2012

“I am NOT getting in there. How do I know that is our car? You get in there and I will walk next to you.”  His voice is loud, his hands are waving; he is standing in the parking lot. We are outside the new Express Library which is located in a mall a few miles from the memory care center. What do I do now?

Challenging behavior of an Alzheimer diseased person number what? Where do I have the solution to this problem in my own memory bank? Once before, my husband refused to get into our car and I quietly walked him around to the other side and he was willing to climb into the back seat. All he refused that time was to be belted in and I agreed to that moderation, locked the child proof doors and drove him home. Now this tactic does not work. As I stand with him on the sidewalk next to the car, thinking, Bob states “I am going to pee on that bush.”

I was so happy because he turned the situation around for me. Refusing to let him urinate outside, we slowly walked back into the mall as he stopped like a puppy by every bush. After he used the bathroom, washed and dried his hands, he climbed into the car willingly, completely unaware of his prior refusal.

Yes, this confrontation had a satisfactory outcome, but only medication can moderate agitated behavior in a person with moderate to late stage dementia. My husband was showing signs of anxiety, due to his increased loss of being able to situate himself in space.Although the behaviors look similar to those of a toddler, they are entirely different because the toddler is practicing his new set of awareness-of-self skills. The toddler is practicing independence by his refusals to get into the car.
Bob has also been refusing to disrobe, to shower and sometimes to eat. His paranoid reactions are off-putting to the care workers who cannot react to each person’s sudden changes of mood. They just let him be. Bob’s meds will now be increased but we will have to be patient for a few days until the medications take effect.

Tuesday, September 11, 2012

When Looks Deceive September 11, 2012

"You're getting to look like all of the others out there, I hardly recognize you," my husband told me today when I was sitting in his room visiting since it was raining outside.
He then pulled down the picture of the two of us and said it is a picture of me "with that guy that married you."
"And who might that be?" I asked. "That guy is you."
Bob's mouth opened in surprise and a big smile appeared on his face. "That's me? We're married?"
I hate this disease. I hate this disease.Let's raise lots of money so the researchers can identify it sooner and prevent this absurd decline. Join an Alzheimer's Walk near you. Support a walker. Read Put That Knife Away as profits from the book will also be donated to fight Alzheimer's disease.

Sunday, September 9, 2012

100 words for Sunday, September 9, 2012

I sit to write about what has mattered most to me this past week. I am so upset that Steve has hurt himself again and amazed that he can keep up his good spirits although he is in pain and needs to wear a soft cast. I feel gratified that Bob ate his whole meal when we took him to dinner tonight. I love that my daughter Linda is taking new Zumba classes with me, but mostly I feel reassured that working to get out the November vote is the right thing for liberal me to be doing right now.
No, I am not going to get political in this blog. If you want to see my political views click on my facebook page. I do want to see more money allocated to Alzheimer research and caregivers' needs for respite, socializing, medical treatment and managing the challenging situations presented to us each day.Living in Arizona makes me feel so badly for Mexican people who have come here to provide a life for their families and to see them discriminated against in edicts such as not issuing the them driver's licenses in a huge state sorely lacking in public transportation.I wish there were a safe way for people to flee violence and come to our country. We need young people who are determined to study and to succeed. Although I understand the issues, the compassionate side of me worries when any minority group is singled out for disrespect.
September has always been a month for assessing my feelings about my life, about change and renewal. What have I accomplished so far? What am I willing to commit to doing now? Where shall I devote my energies? What will make me feel good about myself and about my connections to my family and to the greater community in which I live?
I have completed the first draft of the book describing my feelings about my relatives' experiences and mine during and since World War II and I have sent the manuscript to some family members and to some friends to read. If any of you is interested, please let me know. At this point I have not decided whether to publish it or not.

Friday, September 7, 2012

Friday's Fireworks-September 7, 2012

After feeling elevated by the truly American spirit speeches this week, where the emphasis was on people helping each other, especially folks who are sick or disabled, it is difficult to follow up with ordinary life. However, here in Mesa, Arizona we have our own fireworks this morning. As I have explained before, the sky is huge in Mesa with no buildings that I can see taller than a second story a hundred yards away and mountains surrounding us on three sides. That sky turned grey and clouded as dawn broke this morning. While I was talking on the phone with a dear friend in New York, I was sitting on my patio, which looks out toward the west. As we spoke, oceans of clouds breezed in above me. Soon the sky to the north turned to a mass of dark grey. Lightning blazed both from the south and from the north, followed by thunderclaps at least a dozen miles away.
It is now three hours later; sheets of water keep raining down on my house, from the north powerwashing my windows, pouring from my roof  onto the grateful plants below. The storm is directly above us now with huge streaks of lightning right in my back yard it feels and followed almost immediately by loud thunder.
In New York, rain is something to deal with by clothing and boots and sturdy umbrellas as we continue with our days. In Arizona rain is an event to behold, an experience to marvel, a seldom occurrence even in monsoon season where the television weather announcers are proud that Sky Harbor Airport measured 2.6 inches of rain so far this season!

Tuesday, September 4, 2012

Interesting Observations Tuesday, September 4, 2012

In Sunday NYTimes Magazine there is a weekly One-Page Magazine section with a column written by Judge John Hodgman. This past Sunday's column concerned collections. My husband was an inveterate collector who specialized lately in collecting and sharpening knives and scissors. He also collected clothing which even without the usual East coast change of seasons, I sort through every September. I remove what has been outgrown or outworn during the past year, with my rule being "If it hasn't had a useful function for me for the past two years, donate it to someone who can make good use of it."
I sort through my clothing and fill several bags to donate. I see a box on the top shelf of the closet and open a container of Bob's clothing . Surely he has not looked there for the past two years. I find, stashed among the too-short shorts and pocketless t-shirts, a plastic bag full of large multi-tool pocket knives!
As I read Judge Hodgman's column I laughed at his bottom line;"Remember: the difference between a collector and a hoarder is a display case."


Sunday, September 2, 2012

100 words for Sunday, September 2, 2012

Do you know anyone who really listens when you have something to say? Who asks appropriate questions to help you pinpoint your exact meaning? Who makes you feel understood and comfortable and then by asking “Could it be another way?” destroys that comfort zone completely?
I listened as the hospice worker told me my husband is “failing,” asked all the pertinent questions and she felt confident her conclusion was sound. However, I see he is argumentative, withholding, agitated, and angry with the staff and with the other residents, yet delighted visiting with me, talking and walking. Not going anywhere yet.

What  a difficult time this is for me. I am drawn to spend more and more time at the memory care unit; I want to provide those moments of joy for my spouse as long as he is capable of experiencing them.He jumps up when he sees me, recognizes me at once in a disbelieving kind of way. "Is it you? Is it really you?" and to the staff "That's my wife," even if I arrive twice in the same day.
The staff has a hard time as Bob wants individual undivided attention doing what Bob wants to do, but he will color or build with blocks or play catch for a short while; he resents being told anything and he has no relationships with any other residents. He cannot listen to music or understand the televison shows; the movement on the screen doesn't attract his attention. He wants to discuss measurement, money, why men are bald and how he can "get out of here and move back to New York."
But most of his utterances are not understandable and do not make sense, he has lost all understanding of numbers, exaggerating the size and worth of what he sees and imagines. He spends his time looking out his window at a parking lot and a trailer park community with tall palm trees.