Follow by Email

Tuesday, May 29, 2012

With Gratitude Tuesday, May 29, 2012

I am bubbling with gratitude today for the people in my life--and Bob's because of the news I received yesterday of the wonderful care he is receiving at Arbor Rose Senior Center and from East Valley Hospice in Mesa, Arizona, while I am able to enjoy New York,  promote my book, take care of business and visit with our friends here.
Sue, my dear friend whom I met through the Arbor Rose day care and resident family support group, visits with her husband who is also in the memory care unit and reports to me her observations about my husband.

       "I think he's doing better. He's not shuffling as much. He's talking, although much of what he says doesn't make much sense. He's walking with his head up and he's complaining that he does not like the food," Sue shares.

Steve adds, "Bob had the 'best day of my life' he said, really. We spent three hours together, he ate every bite of food on his plate at The Village Inn, we went to Linda's house; he played with Grant and he even petted my hand as he does with you, I think to say thank you."
When they returned to Arbor Rose, Bob sat in a leather lounge chair and a careworker smiled at him and asked if he wold like some milk and cookies. Bob smiled back and said to Steve,"This is such a wonderful place. Everything is so nice and clean and the people are friendly. " Wow, I haven't heard such a long, relevant, positive comment in months! Thank you all.

Saturday, May 26, 2012

100 words for Sunday, May 27, 2012

Rain pours upon me full force as I traipse to the deli to buy a pound of pastrami and a loaf of rye. My socks are wet inside my sneakers; should I have worn boots—in May?

Four blocks later I slosh into the subway, ride to Penn Station, sit and wait for the train to Dover. Asking for our tickets, a policeman explains, “Only ticketed passengers are permitted a seat.” One man presents a valid ticket purchased in April for Trenton. Loudly, the officer makes him leave, embarrassing him, telling him to pick up trash. This feels like harassment.

Policemen have the knack of intimidating people. Although I feel sorry for the man and I resent the tone of voice, too loud, and the way he addressed the man, I cannot speak up in his defense. I feel today as those who get stopped and frisked feel when they've done no wrong. It is how they look that sets them apart for disrespectful treatment from those who would protect us from harm. Who is 'us,' who is 'them'? Did the officer ask all of us in the row of seats for our tickets because he was suspicious of this man? I will never know.

Fond memories accompany me as I ride the NJ Transit train alone for the first time in many years on my way to visit Ronnie and Eliot.  The familiar towns all chug by: Newark where my sisters and I were born, my two older children Steven and Linda too; East Orange where my grandparents opened their nursing home, Millburn where my parents moved us when I was a teenager, Short Hills where my sister Sharyn lived with her young family, Summit where Sharyn and Burt live today, Chatham where the restaurant is located where my Sweet Sixteen luncheon was held, Madison, Morristown and Denville where Bob and I shopped or ate dinner.

As a teen, we used to snag our stockings on the then straw seats on the train we called the Delay, Linger and Wait. I forget what the D, L and W stood for originally, but I ‘wikied’ it as I write this now. The Delaware, Lackawanna and Western Railroad- I don’t think I ever knew it. Then and now it takes me where I need to go.

It is good to keep in touch with Bob’s best friend for more than fifty years; they have been my friends for the past 22 years as well. Too much loss too quickly is too hard for me to process, just as Bob’s illness is impossible for Eliot to manage. We all want Bob to be who he once was; we miss his knowledge, his concern, and his generosity for his friends and coworkers. Most of all we miss his companionship.

Tuesday, May 22, 2012

Science Times for Tuesday, May 22, 2012

A few weeks ago, I scoured my oven in response to my strong feelings about an article in the NY Times Science section by Jane Brody. Today her topic is the power of optimism, which is also a very difficult subject for caregivers of loved ones with Alzheimer’s disease or other life-limiting, mind-stealing dementias. Jane Brody could be describing me as she describes herself as “someone who plans to get more done than time permits,” or who the Mayo Clinic describes as a person who believes that “good things will happen. .. and that negative events are temporary setbacks to be overcome.”

I don’t “give up and walk away from difficult situations.” I plan a course of action, get advice from others and stay focused on solutions.”

When faced with my husband’s, at first gradual, decline, which altered his personality as it decreased his short term memory, I did “seek a different approach and try harder.”

But there my optimism ended as it blinded me; I didn’t recognize my husband’s symptoms as an illness. I thought I needed to modify my approach to his demands. I sought out many approaches and I tried as hard as possible to find diagnoses that would indicate a possibility we were not facing dementia. We read books about keeping one’s brain healthy, took supplements to maintain memory, travelled from one medical specialist to another obtaining diagnoses and medications for Parkinson’s disease, (Maybe, the doctor said, we are dealing with Lewy-body dementia) sleep apnea, (Maybe, the doctor said, lack of oxygen is causing cognitive decline) to refine the original non-diagnosis of “some kind of dementia, probably Alzheimer’s type.”

My optimism surged once again when I decided to write a book about my experiences as a caregiver to assist others in recognizing this illness sooner, getting medication for our loved ones and most importantly getting support from other caregivers so we can survive this daunting journey. Now, Put That Knife Away-Alzheimer’s, Marriage and My Transformation from Wife to Caregiver is out there, but not enough people are aware of it. That’s why optimistic me is bringing the book to BookExpoAmerica hoping to give it wider readership so it can be of greater help to more caregivers and their families.

Saturday, May 19, 2012

100 Words for Sunday, May 20, 2012

As I research my grandparents’ escape from the Nazis, I am overwhelmed that their four year long journey succeeded. It is 2062 miles from the prison where they were held in Eastern Poland to Tashkent, Kazakhstan to which Russia exiled them. Both the Russian and the German armies were fighting in the area. My grandparents and three younger people whom they met in prison were traversing Russian territory which was unfamiliar. No one spoke Russian; four were Jewish and the other a Roman Catholic. Because Russia overran Eastern Poland in August, 1939, they were set “free” to walk across Europe.

As a child I only heard the words, their profound meaning of course escaped me. Now as I study the World Atlas and Encyclopedia and the Wikipedia timeline of the Second World War, the enormity of their travails shocks me differently. They actually reached Tashkent and spent the last two years of the war there and were able to come to the United States two years after the war ended.

I have always looked up to my grandparents as heroes; they were my mentors and my ardent admirers, too. I learned their language and they learned mine. But still, the generation gap and the reticence of Holocaust survivors to discuss the horrors they saw and overcame during the  Nazi time, contributed to my limited understanding of just what they had to endure for such a long time. 

Whenever life challenges me and it seems as if I will not be able to stretch myself to garner the inner resouces to tackle the problem, I think of their tenacity and I persevere. I am writing this story now so my children and grandchildren as well as my grandparents' extended families and their descendants will know where we come from and the strength and resilience shown by their forebears. I will share it with you as I proceed because strength and courage in a crisis situation can be a vital lesson for us all, whatever we have to face.

Tuesday, May 15, 2012

Tuesday's Science News May 15, 2012

Quoted from Google News 

The Obama administration finalizes the landmark national strategy on Alzheimer's disease Tuesday, laying out numerous steps the government and private partners can take over the coming years to fight what is poised to become a defining disease of the rapidly aging population.
But some of the work is beginning right away.
Starting Tuesday, embattled families and caregivers can check a new one-stop website — — for easy-to-understand information about dementia and where to get help in their own communities.
The National Institutes of Health is funding some major new studies of possible therapies, including a form of insulin that's squirted into the nose.
"These actions are the cornerstones of an historic effort to fight Alzheimer's disease," Health and Human Services Secretary Kathleen Sebelius said in a statement. She was announcing the steps Tuesday at the NIH.
The first National Alzheimer's Plan comes as the world's top Alzheimer's scientists are gathered at the NIH this week to debate what research needs to be given priority in order to meet that ambitious 2025 deadline. They said it may be time to start testing potential therapies differently, before people have full-blown Alzheimer's symptoms, when it may be too late to help.
"There's a sense of optimism" thanks to some new discoveries, Dr. Francis Collins, director of the National Institutes of Health, told scientists at the Alzheimer's Research Summit on Monday.
But, "we need to figure out exactly where is the best window of opportunity" to battle back Alzheimer's, Collins said. He noted that cardiologists don't test cholesterol-lowering drugs on people already near death from heart failure.
It's clear that Alzheimer's quietly brews in the brain, killing off cells, for 10 years or more before symptoms appear, Dr. Reisa Sperling of Harvard Medical School told the meeting. She called that time period an important opportunity to try to stave off the disease, at least postponing the memory loss and other symptoms.
Already, 5.4 million Americans have Alzheimer's or related dementias. Barring a research breakthrough, those numbers will rise significantly by 2050, when up to 16 million Americans are projected to have Alzheimer's. Already, it's the sixth-leading killer, and there is no cure. Treatments only temporarily ease some symptoms.
Beyond the suffering, it's a budget-busting disease for Medicare, Medicaid and families. Caring for people with dementia will cost the U.S. $200 billion this year alone, and $1 trillion by 2050, the Alzheimer's Association estimates. Even that staggering figure doesn't fully reflect the toll. Sufferers lose the ability to do the simplest activities of daily life and can survive that way for a decade or more. Family members provide most of the care, unpaid, and too often their own health crumbles under the stress.
So the National Alzheimer's Plan, required by Congress, takes a two-pronged approach: focusing on future treatments plus help for families suffering today.
"There is a reinvigorated focus on this disease," Donald Moulds of HHS told The Associated Press.
Among the first steps:
—A planned $8 million study of an insulin nasal spray that pilot-testing suggests could help Alzheimer's. It's based on growing evidence that diabetes and Alzheimer's are related, damaging how the brain is fueled. The insulin nasal spray can reach the brain without affecting blood-sugar levels.

Saturday, May 12, 2012

100 Words for Sunday, May 13, 2012

8 a.m. in the park, but can’t get across the access road as there’s a race in progress. Walking south, I meet several dog walkers who also want to cross the street. We decide to find a gap, run with the crowd and zigzag across; luckily no one trips or falls. Briskly through the Pinetum, around the Great lawn and the Reservoir returning home to shower and dress for Saturday services and a lecture on Jewish art and culture. At 2:30 I walk to the Jewish Museum to catch the Edouard Villard exhibit. Will I ever get enough of NY?

I feel so grateful that my knee is cooperating with all my walking; this evening I watched the sun set over the Hudson River as I sat on my favorite bench on the 72nd Street pier. I seem to accomplish more in a day here, especially with daylight savings time the day is an hour longer. I wonder if I appreciate the sun more because it shines so infrequently here; I don’t think so. I love the sunshine and being out of doors when the temperature is mild no matter how many days of sunshine I experience. I feel I am living up to my goals for this trip—to absorb the culture of the city, to prepare for the BookExpoAmerica exhibit and to promote my book. I am truly enjoying every moment.

Steve reports that Bob is doing well; today they went out for dinner at Bob’s request. He seemed to be waiting for Steve when he arrived, said, “I know who you are,” was dressed appropriately in shorts, shirt, sunglasses and hat and ready to go for a ride. After dinner, Bob asked to go home and was satisfied when they returned to Arbor Rose.

I feel so supported by my family.Linda, Dave, Austin and Grant sent me a bouquet of flowers. Steve sent a card that he and Bob bought together, but Bob had no idea of course.What a lovely Mother’s Day weekend; I wish all of you the same.

Friday, May 11, 2012

Surprise- 100 words on Friday, May 11, 2012

I walk briskly to the east, dressed in black hoodie and sweat pants, as it is 50 degrees as I enter Central Park and see the mostly blue sky with wispy cirrus clouds above the sparkling reservoir. To the east there are now three behemoths reflected in the water as Mount Sinai’s new building is complete. Lush green glorifies the park, and on the carriage path below me I see bushes of deep pink flower clusters as I turn to the north. The wind picks up and I am distracted by a man walking ahead of me, carrying his shoes.

 As I walk beside him, I say, “It’s great that they keep this gravel path smooth enough to walk barefoot.”

 “The small stones are good,” the white-haired Asian man replies with a smile.” In Chinese, we say it helps the balance, the yin and yang.” And so begins a conversation that takes us around the circumference of the lake. We are the same age making similar efforts to remain vibrant and healthy, by eating no meat, yet eating an egg daily and fish; by walking, maintaining a pulse rate of 120 beats per minute which permits us to have a normal conversation as we walk and by exercising our muscles and our brains.

I discover he lived for ten years in Europe, in Germany, Austria and Slovenia, but in my current mood, I don’t want to know more about his life so I exit after my first round is finished and we each go our separate way.

Tuesday, May 8, 2012

Tuesday's Science News May 8, 2012

Sunday's New York Times lead article on page one is titled "When Illness Makes a Spouse a Stranger" and it continues for four computer pages to describe a family devastated by fronto-temporal dementia.Identified as "a group of brain diseases that eat away at personality and language," and sometimes called Pick's disease, researchers differentiate the diseases from Alzheimer's disease because it attacks personality and language before it significantly effects other memory tasks and consistently is diagnosed among younger people. The anguish for the caregiver is the same, however, no matter which form of dementia is diagnosed.
The positive part of the long article describes progress being made in identifying abnormal protein buildup in the brain and in developing treatments for that particular defect.Most frontotemporal dementia is not inherited and most patients receive up to four misdiagnoses before this form of dementia is decided upon. When relatives of people with this form of dementia question themselves about the history of onset, they begin to think the disease was present even 10 years before the first symptoms appear that bring the person to the attention of a neurologist.
People who have developed FTD often have a history of job loss, of losing the ability "to read the tealeaves" of recognizing subtle interpersonal cues in business, or of making really bad decisions with investments, often losing the family's hard-earned savings.
When the effected person's personality changes and his or her level of skills or behavior become too burdensome for the caregiving spouse or family member, residential care facilities are needed to care for these mostly silent sometimes sweet, sometimes hostile shells of the folks they once were.
Hopefully some of the new science will result in prevention or treatment options which will help our children or grandchildren's generation provide better answers. For us now, the message is clear.You are not alone; support is available, ask for help.

Saturday, May 5, 2012

100 Words for Sunday, May 6, 2012

My time is split from movies to dinners with old friends; no walk in the park due to the rain and drizzle, but I did walk along the Hudson one afternoon this week. From arranging meetings with distributors to writing new chapters for my second book, Strength and Resilience, and submitting them for review at The Writer’s Voice class, my days are full. I miss Bob less this year; I feel whole and appreciate the freedom of being responsible for no one but me, graciously provided by my son Steve and my Arizona support group friends who visit Bob regularly.

This process of letting go is not an easy one. On the one hand, it feels good to know that Bob is well taken care of at Arbor Rose Senior Care with the added help of the nurses and aides at East Valley Hospice and that my involvement with his care is more distant; a loving visitor, a supervisor of his treatment and financial concerns. On the other hand, my identity has been so connected to being his full time caregiver for so long it has taken me time to feel separate from him and from the caregiver role. This trip is slowly helping me to reassert myself as an individual, to make the small decisions of the day based on my own wants and needs, to choose how I spend my time and with whom, to care for myself and my own physical and emotional health. It is life-affirming. I feel blessed by good friends, valuable goals, physical stamina and time to be by myself as I make this next transition.

I miss the life we had; I miss the kind, independent, generous, gentle man he was, who always had a project that he was working on or a trip he was planning for us to take. I mourn the loving relationship we had because it is no longer what it once was. There is but a kernel left of the bond we forged; the way his eyes still light up when he sees me, the way he holds my hand or sits next to me, our hips and elbows touching. I fear that soon, even that recognition will be gone and, like my mother before him, when she had Alzheimer’s disease and forgot out relationship, I will once again become “that nice lady who comes to visit me.”

Tuesday, May 1, 2012

Tuesday Science News May 1, 2012

Happy May Day everyone. I have happy news to report for all of you who know someone afflicted with Alzheimer's disease but do not have direct possibilities of contracting the illness yourselves.A report in the April 24 issue of Neurology, printed in today's N Y Times Science section reveals once again that physical activity is associated with a decreased risk of Alzheimer's disease. The subjects were cognitively healthy seniors, average age 82. The first good news is that in this sample only 10% contracted the disease during the four year study.
The study's point hoever, is that those in the lowest 10% of physical activity  were more than twice as likely to develop Alzheimer's disease as those who were physically active.So once again, please avoid the tendency to be couch potatoes and walk--park further away from the store; every kind of physical activity counts to keep those neurons reproducing and keep that blood flowing so the blood vessels stay open!
My husband however, never liked to exercise. When we moved to the city, he walked a lot, but he was already in his 70's and more comfortable in a library or a theater than outdoors.
Speaking of the city, I have to share how wonderful my son and my friends are, visiting Bob in my absence. When asked by Sue if he sees his wife much, Bob answered "A bit." So he's not missing me, he's active, he's well cared for and I am truly blessed by an excellent Arbor Rose Memory Care facility and a super support group. When asked by the staff if Steve was my substitute caregiver, he replied, "I am the caregiver's caregiver." Who could ask for more???