The curse of Alzheimer’s

My dear friend and neighbor, Shelly, a septuagenarian like myself, and the wife of my good friend and neighbor Dave, died Friday, July 1. This occurred after her hopeless battle with Alzheimer’s disease which had slowly turned this beautiful woman into a ghostlike presence, blind, barely recognizing the sounds of our voices. Yet we still have nothing but placebos for this dreadful illness that eats away at the brain with tangles and plaque, slowly devouring the brain and its functions.

Shelly was a teacher of three decades who brought forth music and arts programs in the NYC School system long before it decayed into the carcass of what the Department of Education left of it. Shelly was an old friend of Pete Seeger and sang his protest songs beautifully in their Clearwater Chorus, with a clarity and determination that was laudable.

Up to her last months, she joined in political conversations and decried the various injustices of our today, from the destruction of Palestine, to the elderly who have to fight for their lives to get their Social Security and Medicare, while fat cat earners pick up trillions in tax cuts. Her two adult children came to her side as she slipped into total silence Friday evening, on the eve of July 4^th weekend. Her three granddaughters paid their loving grandma tribute as well. It was the strangest Fourth of July weekend I’ve ever experienced, amid the fireworks and to-do, to be grieving for our lost friend. But so it goes.

As fate would have it, my wife and I were packed and ready to visit our daughter, son in law and grandson in Rhode Island Friday morning. As we lifted our bags into the car Friday morning, Dave appeared from our building on West End Avenue. When we called to him, he came over and told us Shelly was comatose. We both advised him to call a doctor ASAP, and if he couldn’t get one to call an ambulance to take her to the Emergency room of St. Luke’s Hospital near Columbia University. They could resuscitate here there.

Unable to turn his wife of 56 years over to another E.R. or a resuscitation procedure, he quietly passed on that option with tears in his eyes. He did not want to see his wife prodded and poked with needles one more time. Dave by the way is a man some six feet six, a former college basketball player, subsequently a psychologist for many years who dealt with troubled adolescents. Shelly and Dave’s lives were devoted to helping the young, the troubled and the disadvantaged.

As she had climbed the ladder of her West Side NYC School District, she had caught the attention of Lincoln Center and been given an office to work in to develop music and arts programs for NYC school children, largely disadvantaged children whom she had turned into choirs of singing angels, hopefully serenading her in a better place now after her painful death. Her symptoms had begun manifesting themselves in that earlier period as she became unable to complete complicated reports or even to get dressed to get to work on time. Her husband assisted her, faithfully getting her to the church of art on time, then going to his own job.

Nevertheless, working as she did became impossible for her and she decided to retire. Children and parents sorely missed this blessed individual who could bring music from a stone if necessary, a woman who had the fire of melody and harmony sewn into her bones, her every fiber of being. This same woman, who would fast-walk with her husband every morning before work, slowed down to a halt, then a wheelchair and a hospital bed at home. Earlier in her life, she was diagnosed with MS. And later, her short-term memory loss was credited to it. It wasn’t the case. In an examination by multiple doctors at Roosevelt Hospital over a period of several days in the past weeks, no MS was detected but rather full-blown Alzheimer’s.

How can this happen you ask? Ask the doctors? Ask life itself how it permits a woman who memorized Beethoven, Mozart and Bach to play on the piano in her youth, could barely sit at the keyboard in the end and pick out a tune. Ask how this disease could ravage her so into silence.

Shelly’s experience from the beginning was all the more poignant and affecting for me because I witnessed my own father at age 76 manifest a total breakdown in memory, literally locking himself into his own apartment, then calling the police, the fire department, and EMS to declare he was having a heart attack. On a ninety degree day in August, he locked all the windows, closed the blinds and drew the curtains.

When the firemen arrived at his door, which was locked from the inside, he called the police again and said some thugs were trying to break in and kill him for his money. In fact, he couldn’t find his wallet, which would later turn out to be in the side table next to his armchair, where he had placed it with the with his keys. He lived on the second floor of an apartment building in Bay Ridge, a block from Shore Road and a beautiful view of the Verrazano Bridge and the Narrows.

When the police and firemen and EMS arrived, he would not open the door to them. Ultimately, the building superintendent saved the day and gave them a duplicate set of keys to his apartment. When they opened it they found this frail 76 year old man, head in hands, crying, afraid for his life. Fortunately, a cousin of his who lived nearby saw the mayhem in the street went over to the police and offered his assistance. He was brought to my father who greeted him with tears. That night, his cousin called and relayed his story to me, advising me to get help immediately.

I contacted his gerontologist and general practitioner, the latter who had saved an X-ray he had taken of my father’s brain the previous year. The latest X-ray had shown serious shrinking of the brain, a sign that the tangles and plague were at work. We engineered a scenario to have me take him to St. Vincent’s Hospital—to the E.R., saying he needed to have his heart checked for the heart attack he said he had earlier. The doctors that morning found no heart issues. But he didn’t know the time, the date, or the year, though he was affable enough. After another round of questions, it was their determination he should stay at the hospital for further examination.

We spent eight hours in the waiting room of the E.R. until a bed was found for him and he was admitted, fighting every step of the way, saying that he did not need to stay. Bottom line, he spent four months in St. Vincent’s, in a variety of departments, two months in the psych ward, which confirmed his dementia and Alzheimer’s. During this time, my wife and I looked for a nursing home for him. The city’s all seem packed with patients.

And there were issues with his second wife, who had abandoned him to me one day, handing me an envelope with their bills. Subsequently, there came a claim from her lawyer on his/their assets, which is another potential side effect of these situations. Fortunately, I had gained power of attorney, so I was in charge of his assets. Our lawyer went to work; my stepmother’s lawyer went to work, battling for bucks. Not a pretty picture.

To be reminded of all this, including the nursing home he ended up in, in Cortland New York, 40 miles from my home, was a double dip of pain for us both. Frequent visits help the patient in a home. And I drove up at least once a week. Yet within a year he passed. He had broken his hip in the shower, then had an operation to repair it at a nearby hospital, and then convalesced in intensive care with the most damaged of the patients, which broke his spirit altogether. He passed several months later from a stroke. He was 80 years old.

So my dears, beloved children, grandchildren, husbands, wives, look out for the symptoms described. Be as kind as you can to your loved ones. If you see them afflicted, get them to the appropriate doctors. Get Power of Attorney to protect their assets. And get them good care. Alzheimer’s is a one way street to a dead end sign.

Work with your own as well as your own loved one’s sense of denial. It is only human to want to protect the afflicted from hospitals, too many doctors, and be put into homes, especially a journey from where you live. I must say though that the Cortland home was very nice place, and the suburban setting offered a calmer atmosphere for Father to be in. He often asked to come home, and I had to explain over and over why not. Patience, my friends, have patience.

Shelly, in fact, toward the end, would tell Dave, “I want to go home.” Only his answer was, “You are home.” Nevertheless, the question was asked many, many times. It broke Dave up to hear her say that, but he always patiently answered, “We are home, Shelly.” That’s love, the best medicine.

My father, the son of Italian immigrants and a fierce conservative, is cathected in my mind to Shelly, the daughter of Jewish parents, second generation Americans, conservative as well. Alzheimer’s is an equal opportunity affliction. To think of Dave and Shelly sitting around our or their dining room table, laughing and telling stories, or my father singing Puccini along with Pavarotti, with my children at his table, is very similar, charged with love and a certain sense of sadness, which tests your deepest strengths and faith in life to avoid depression.

There are many organizations and much information about this debilitating disease on the Internet, but ultimately if you have ongoing suspicions or observations of the behaviors described, contact a physician who can deal with and diagnose the symptoms. Despite the claims of cures, medicines that will ameliorate symptoms somewhat, or of promising research on genetic components of the disease, Alzheimer’s is still a killer at large.

David, bless his heart, lived with Shelly’s symptoms for years with his brave though somewhat battered heart, a quadruple by-pass at 37, which caused Shelly, crusader that she was, to put him on and prepare a low-fat, low-cholesterol diet until she could no longer function. Yet she set him on a path to life and he returned the favor. If the disease strikes, you’re going to need help from your mate, older children, and younger children, who often cheer up the afflicted with their lighter spirits.

Do not be ashamed of admitting what the problem is or your suspect it to be. Millions of Americans are afflicted with Alzheimer’s. Several years later, even my step-mother came down with it. Though she had left my father in his worst hours, because she couldn’t cope with him, and had her own problems, she won my sympathy. She, too, passed in a special facility for Alzheimer’s located in Mexico. Her care-giver was my step-sister.

Care-giving generally takes great patience, energy, and love, and can easily wear an individual down, so don’t be afraid to ask for help, from spouses, relatives, hired nurses, or nursing facilities. There’s no being a hero here, just a human being with needs, families, jobs of your own to get on with. So sharing the work is a good idea. No medals are given for breaking down yourself if your victimized loved one has contracted the disease. Professional help is essential for both of you.

Dave, only after years of protecting Shelly, is caring for himself now, trying to recover his joy for life as well as cope with his grief, which is deep. In time my dear friend will recover. His family and friends are circling him like a wagon train. The pain of loss will recede, and the light will shine, though shadows, memories, will always blindside one from time to time, out of the blue.

With all that’s going on in this world, it is easy to forget the sickness that needs tending in our own families. Keep an eye on your aging or elderly, as you would your young and adolescents. In rare cases, Alzheimer’s has struck remarkably younger people, as early as in their 40’s. Check yourself out with memory tests every now and then. And try to keep your brain active, reading, playing games, following the news and life. Involve yourself in music or art, some form or hobby. Try to enjoy yourself. Joy is a great force for healing.

What’s more, the pressures of a militaristic, money-mad society have a negative impact on the human psyche and therefore on its body. Do your best to be healthy and strong. Living in an over-stressed world can break down even a strong persona. So, don’t let “them” take your health away from you. Exercise, run, walk, swim, bike, smell the roses, whatever you favorite, just do it! It’s your investment in you and yours. And bless you Shelly, who gave so much, wherever you are.

Jerry Mazza is a freelance writer, life-long resident of New York City. An EBook version of his book of poems “State Of Shock,” on 9/11 and its after effects is now available at Amazon.com and Barnesandnoble.com. He has also written hundreds of articles on politics and government as Associate Editor of Intrepid Report (formerly Online Journal). Reach him at gvmaz@verizon.net.