Finding the Silver Lining? June 28, 2013

It is so difficult to deal with the everyday issues of Alzheimer's disease that it becomes harder each day to find something positive to keep our spirits up. Our caregiver groups' spouses are either maintaining their plateaus or declining. Our families are either making improbable suggestions or are absent altogether. The problems facing the new members are overwhelming to them and we do feel good when we are able to help with our presence and experience, but the never-ending cycle of deterioration due to this devastating life-limiting, personality-changing illness endures.

My cousin who is dying from metastasized small tumor lung cancer is traveling each day through the same process of dementia, at age 61, that our spouses have been traveling at their slow pace for the past six or seven years. First day, he lost his short term memory although he could remember everything before the day two weeks ago that the cancer spread to his brain. The next day, most long term memory was gone. On the third day, he began to hallucinate that "a man out there has an atomic bomb, but don't worry I have one, too." He was trying to make sense, I think, of the radiation treatment prescribed. By the following day, he did not know where he was or what the bathroom was for. "Why are people making me do things I don't want to do?" he asked.Since the fifth day he has been in diapers, jumping up from a sound sleep and walking out of his room into the corridor. A guard had to be hired to stay in his room. Since then, he cannot feed himself, his right hand somehow cannot find its way to his mouth. Today he sleeps much of the time, needs to be fed and his right arm seems to be hanging uncontrolled at his side.

When our loved ones are old, we feel a bit comforted they have had a full life. When fronto-temporal or other dementia hits before age 65 the loss of the still-living spouse or parent is so much harder to understand and our mixed emotions pain us caregivers so much. We want our loved ones to receive the best care possible, we feel the obligation to maintain their dignity and comfort but we also wish for an end to their suffering and our own.

Reentry June 21, 2013

Happy first day of summer to those of you who do not live in Arizona where it has been summertime for quite a while. I return to 107 degree days and a life fortunately spent in air conditioning. My friends and family greet me warmly although happily for me life goes on well without me being here. Age has that effect I think. Retired, out to pasture, no longer responsible for anything really important.
What I am disappointed about however is that my husband who resides in a memory care facility due to his advanced Alzheimer's disease did not recognize me when I walked in to his room. This is the first absence from which I return to find him unrelated. He doesn't seem to be seeing not only me but the staff who address him either. He speaks mostly incomprehensible syllables, but he makes no eye contact no attempt at having the other person understand what he is saying. Except when he has a problem.
That quality is wonderful in that he gets his needs met. It sounds like a perverse joke, but a worker dressed him this morning and put his underwear on backwards, then tucked his long undershirt inside his underwear, like short-sheeting someone's bed in summer camp!
After indicating to me that he had to "go in there" he entered his bathroom, but returned soon telling me "I can't do this." No wonder. He was soon put to rights, totally accepting of assistance, showing absolutely no affect. What an awful illness this is, the loss of dignity, of independence, of thinking about most anything saddens, amazes, astounds me continually.
My husband spends his days either lying on his bed or someone else's when he doesn't remember which room is his, or following the staff wherever they go. When Steve or I come to visit, he will attach himself to one of us, following us around, and since we have no assigned tasks, he asks "What are we going to do now?" or "Where are we going?" He will play catch for a while, but then he asks, "Why are we doing this?" He is merely being compliant, not enjoying the game.
I move back into my visiting mode, talking with the staff about my husband's care and feeling so helpless that there is nothing more I can do.

Developing a Bit of Perspective Sunday June 16, 2013

I spend a lot of time wondering and marveling about the vast amount of new building construction in Frankfurt and in Berlin and the constant references to the bombing during the Second World War and to their continued need to rebuild. I see how proud Frankfurt is of their skyscrapers which they call "cloud watchers" they even had a weekend festival dedicated to them the Saturday I walked to the train station beginning my journey remembering the  deportation of Polish Jews.

I feel that the war is so much closer to the Europeans than it is to those of us comfortably safe in the United States

And then today, I travel to see  the New York Museum of Jewish Heritage -A Living Memorial to the Holocaust, exiting the subway at Rector Street walking down Greenwich Street to Battery Park Place and to the museum, passing of course the World Trade Center site and connecting the dots.

No matter that the Germans were the losers in the Second World War and that the Allies bombed their cities in order to win the war, their turf was destroyed and they must make it right, physically, politically and psychologically. They must keep the war uppermost in their minds to accomplish the goals of reparation for their people-- and for the rest of the world to trust that they are rehabilitated, heart, mind, soul-- concrete and glass.

We as a country were mortally injured by the airplane attacks on 9/11/2001; we are still rebuilding, not only the site itself with its m useums, shops, office towers and skyscraper building, but psychologically, expanding our security networks, feeling at the same time more vulnerable as a people than we have ever felt before--except perhaps during the civil war which is remembered so much more closely in the South than in the North because so much more physical destruction occurred there.

We lick our wounds, we rebuild, we burden our children with the feelings that started the old conflagrations which unfortunately has the effect of maintaining old political, ethnic, class, race and cultural clashes and then we try to learn from those experiences, how to protect ourselves if the world goes crazy again and hopefully how to build bridges to discuss the differences and inequalities we observe in order to build better lives for us all.

Doing nothing but remaining present June 14, 2013

Didn't this used to be Flag Day? Until the flag was politicized and no longer represents the whole population and position of our United States. I remember as a child looking into the back of the coat closet for the flag which had a flagpole holder attached to the doorpost of our house and rushing to unfurl the flag and watch as my father reached up to install our flag as we placed our hands upon our hearts and recited the pledge of allegiance.

As first generation Americans we were aware of our fierce pride in our country. Today we take our comfortable lives for granted and criticize our government as it tries to protect us from ever more insidious means of destruction. We question what we don't understand. Many in my generation fear the information technology altogether; we fear knowing that younger people understand more than we do, that our experience and knowledge in this arena is obsolescent. Embarrassed by that fear, we turn its expression into anger.

In the medical arena, we still want to feel that the doctors know more than we do, that we can rely on someone to care for us when we are ill and to recommend procedures that are curative as well as symptom relieving and to advise us when these treatments are less than effective and should be discontinued.

With loved ones stricken by Alzheimer's disease or other life-limiting degenerative dementias, it strikes me as difficult when no one in the medical field knows when to end the Aricept or other memory-enhancing medications, especially now when we see that as side effects of some of these medications, there is protection against heart disease. In whose best interest is it to keep memory care folks who no longer can make decisions about their own health care needs alive longer than their bodies' needs? Have I become so cynical that I feel the big pharma companies want to profit from the projected increase of Alzheimer's disease in the next ten years as 65,000 people reach age 65 every day?

Dr. Abigail Zuger, writing in the Hard Cases analysis in the Science Times this Tuesday(June 11) suggests that physicians not rush to fix all of the problems that patients present chronically at every visit. She advises being present for the patient, listening to the issues, understanding the needs behind the symptoms until the physician and patient know more or less what the best way to proceed needs to be. As our world becomes more and more complicated, as our individual knowledge base is limited due to the swift increase in knowledge available, we need to learn to do our own research, to trust in ourselves so we can participate in these decisions for ourselves and our loved ones.

Survival at Any Cost? Saturday, June 8, 2013

I SIT WATCHING THE GRACEFUL WHITE SWANS GLIDING ALONG THE ZurichSee, Lake Zurich on another crisp sunshine bright early morning. I have had a wonderful shower compete with hair conditioner and a breakfast that included gluten-free bread which the hotel remembered from last August when I visited here last not at all contemplating a return visit so soon and especially not on this sad occasion.

After two weeks of researching the Holocaust victims' yearning for survival in the midst of unimaginable horror, I watch my dear cousin Nora and her husband  Robi struggle with his metastasized lung cancer, which, although diagnosed only in January and which responded so well to the four months of chemo that followed, is not only in his liver, spine and brain, but seems to be causing extreme nausea and fatigue for which he has now been hospitalized since Wednesday.    Although he refused to see me when Nora inquired, knowing I was arriving, I accompanied her to the hospital yesterday intending to wait in the lounge while she visited her husband. However when we arrived on the unit he was walking to the toilet, pushing his drip tree along. As we both waited in the lounge he returned and invited me in to his four person large airy high floor room overlooking the river with the still snow-topped Alps in the distance.

The question is does he want a feeding tube inserted if he cannot swallow. Does he want vigorous treatment, mild symptom relief or no treatment at this point. How awful to have to decide such a question when there is no chance for survival. The hospital team will do a PET scan today and by Monday may have more information to help guide him to his decision.

How do we let go?

Visiting Auschwitz June 3, 2013

One million chattering people line up to enter Auschwitz each year. In the ten minutes we waited for the English-speaking group to form for a 9:30 a.m. tour, four groups of high school children entered. On the other side of the turnstile, conversation stops; everyone listens to his or her own audio of the amplified whisper of the tour guides as they lead the groups to the yard, looking back at the administration and processing building we have just left. We hear why this site was chosen, we learn about the chemical company, IG Farben which still owns Bayer the aspirin company, which was established here and the railroad hub and the old military barracks which formed the beginning of this most well organized killing processing plant.

We see the replica of the smug sign at the entrance. Arbeit macht frei. Work sets you free.The original which was stolen has now been found and now hangs at Yad Vashem in Israel.No one was ever freed from Auschwitz or the much larger Birkenau nearby. And the work was designed to kill the workers through starvation, deprivation and denigration of spirit and soul.

We walk in the appropriate-seeming drizzling rain along the muddy roads passing barracks where 10-15000 Russian prisoners of war were killed to the barracks where Polish political prisoners were housed where the pictures in the corridor note the entrance and exit dates of the inmates, mostly less than three months from entry until death. We learn about the difference between the Sunder commandoes and the Capos. The Sunder commandoes were prisoners whose job it was to shovel the dead bodies into the ovens from the gas chambers.They were killed after a few months to prevent witnesses; the capos were also prisoners who received  better striped jackets and were the supervisors at the  work sites and in the barracks who often volunteered for these positions. Those who survived the war and were caught were sentenced to death. 

We hear how it is impossible to know how many people were killed here as the decision for death was often ordered by the doctor who stood at the head of the line of people who arrived from each cattle car train and by thumb sign right or left indicated who went directly to the crematoria without being registered.

We see a photo of two trains, one empty with a pile of belongings dumped in the center between the trains and the next train full of people packed eighty or more into each car.

We are shown how peaceful the people are as they have been promised they will be resettled and will begin new lives here. They have brought their pots and pans;some have purchased tickets to be on this train from places such as Hungary, a long ride away. They believe that elegant and sophisticated Germany, the land of Goethe and Schiller would be able to move people to the west and to provide better lives for them.My grandmother's sister Shaindel was on that line that led to the showers which was really a miserable painful death by carbone B gas with two of her sons; the oldest son, age nine, Shimon, ran across the line to hide behind his father Ari, who was deemed good enough for work. These two survived to tell me the story when I met them in Israel in 1980. Shimon was then married to Zvia and worked as a diamond cutter.

I recite the Kaddish for the dead silently and for my grandmother's cousins and their families who were murdered here as well, for my grandfather Wald who was shot in the courtyard at Jasanovek death camp in Zagreb, Yugoslavia and for my Uncle Wolf Wald who was murdered at Bergen-Belsen and for the more than six million ordered killed by the Wannsee Pact of January 1941.  

I cannot adequately describe to you the feelings I had upon leaving, first, that 75 years is not enough to forget the atrocities committed here, that every school child needs to see what has been engineered here. And then I think---those barbarians-- but no, they were people just like you and me who fell for an Utopian kind of superman who charismatically called for superhuman sacrifice to bring about a world comprised of people who were blond and blue-eyed, white and heterosexual without any physical deformities or disabilities and who all felt as he did about the future of a Europe just for themselves. 

Change the adjectives and we still have folks who preach similarly. The difference between them is  the cunning shrewd abilities of the German people to invent and engineer and organize so well. They still do. I am sitting here in a lovely breakfast room at my boutique Berlin hotel where no one has inquired as to my room number. Why?

Because you need your room key to engage the elevator, so anyone coming into this room by a separate elevator from the Reception floor has to be a guest of the hotel!!

  I did not want to visit Auschwitz ; it was not on my uplifting tale of survival against many odds story I am writing. But just as I cannot drive past Woodbridge New Jersey without visiting the graves where my family and friends from Millburn New Jersey lay buried, I could not conceive of visiting Krakow, Poland without paying my respects to the   memory of the millions of Holocaust dead.

We all need to see it to remind ourselves not to be taken in by promises, by charismatic leaders who wish to divide people by placing any one group above the others; we are all worthy of life, liberty and the pursuit of happiness whether white, red, yellow or any shade of brown, whether gay, straight, cross-gendered, disabled or well-bodied, Democrat or Republican, rich or poor, well educated or not so, workers or beggars on the street.