When Your Parent Becomes Your Child: A Personal Love Story (Part 2)

By: Bruce Schwartz
Submitted: 2007-01-17 16:20:55
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I consider myself a reliable source in care giving, one who understands the decline of the body and mind from month to month. I, unfortunately, lost both of my parents to Alzheimer’s disease. As the main caregiver for them, a part of my heart and soul was forever taken from me; a part I will never be able to reclaim. However, it developed a resolve in me, a spirit I never knew I had. Although it took an hour of driving round trip to be with each of my parents, the thought never crossed my mind. It felt good to make them happy; to make them feel secure that I would always be there to protect them. My entire family reacted the same way. Like we were taught in our youth: “Be a mensch!” (a really good person).

Financially, my parents’ small fortune was wiped out (the average cost in care is $170,000 per patient). But, the worst of it was my teenaged children had to watch each grandparent whither away and forget who they were. With it (doubly) in their genes, they worry it will happen to me – and to them.

My father died at 74 years young. Four years later, the same killer attacked my mother. Was God punishing my family? Had we not lead a life of which He was proud? There are no answers, and people must remember that. It is no one’s fault. However, we can stop it. But, more research is needed, and research costs money. According to Frank LaFerla, PhD, and colleagues at the University of California, Irvine, they demonstrated in the lab (with mice) that amyloid proteins cause plaque in the brain. The question remains: Is it plaque that causes Alzheimer’s, or is it the mass of tangled protein (which causes plaque) that causes Alzheimer’s? In the August 5, 2004 issue of Neuron, Dr. LaFerla and colleagues wrote: "These findings raise the intriguing possibility that a multi-antibody-based approach - one targeted against plaque and one targeted against tangles - may provide the most significant benefit for the treatment of Alzheimer's disease." That is unless you wait too long. Once the tangles reach a certain point, your brain can't clear them. “It's important,” he said, “to diagnose Alzheimer’s in its earliest stage before the protein becomes a tangled mass, and to look for ways to clear late-stage tangles.”

Analyzing my parents’ lifestyle, I tried to make sense of the cause of their disease. The only thing I could think of was they were both smokers until their forties, and we all ate lots of red meat almost every night. Red meat, if not lean, causes plaque in the heart. This is not to say it causes the amyloid protein that causes plaque in the brain. But, the old adage still remains: You are what you eat.

My mother was the most selfless, most self-sacrificial woman I have ever known. Nothing was as important to her as her children and grandchildren. It was why she gave up a promising career as an opera singer. From the time my brothers and I entered elementary school in Brooklyn, NY (this was back in the 1950s) my mother worked full-time (in Manhattan) so there would be less of a burden on my father. She loved to laugh and make others laugh. Her personality and effervescence was infectious. She deprived herself of the many rewards she could afford, so she would have that much more money to leave to her children. In that, she was steadfast. Believe me, she had her complaints and demands - and many opinions - but don’t we all?

My mother started slowly with the progression of her disease. She could no longer stay at home because there was no one to take care of her twenty-four hours a day. I made the decision to place her into assisted living, where she could live in an apartment with her own furniture and have her meals in a restaurant–style setting, with her medications administered to her four times a day. Of course this was expensive, but we had no other choice; she wouldn’t allow strangers in her home. I visited her almost everyday and spoke with her about everything imaginable. She seemed okay, but she wasn’t. She was forgetting things at a rapid clip. It was difficult for her to make friends, she hated the food, and she became resentful and excitable. Still, we stuck to our plan. Every weekend my wife and I would bring our children there for lunch, and my mother’s spirit soared. We brought in pizza, Chinese food (her favorite), deli, homemade meals that she had taught me to cook every Sunday growing up. We spent hours with her and she laughed and laughed (she was always my best audience). But when we were gone, the nurses would call us daily and tell us how she would get undressed and wander her room naked. From then on, whenever I would visit her, I would go to the nurses’ station first and ask them to go into her room to see if she was dressed. The last thing I wanted was to see her naked. (I didn’t need that nightmare.) The staff also said she was starting fights with the other patients and physically hurting them. It was time to move her into a nursing home. She was progressing faster than my father had.

When we moved her into the home, I went through her belongings in her condo and found old pictures of family, dating back to when she was a little girl. I hung them all over her new room. The long-term memories are a comfort to the patient, and with her violent outbursts, she needed a comfort zone to recollect herself. I even found her high school year book. We went through it and she remembered so many old friends. I took her to restaurants (her favorite pastime), as did my brothers. My wife and I took her to religious services (as she was a devout woman). Her dignity, and whatever moments of happiness she could experience, was the best emotional medicine for her.

Every day I was at the home I noticed something that bothered me. Very few people came to visit their relatives. Even on weekends. These poor souls cried all day, screaming out their children’s names while trying to convince themselves and everyone around them that their son or daughter was coming that day.

But, they never did.

Many family members think that because their loved one is forgetting their name they no longer remember them and don’t have to visit anymore. But many Alzheimer’s patients remember it as they sit alone and reflect, and because time moves so slowly for them it seems like an eternity since anyone has come to see them. It is sad and pathetic. My parents were there when I was a child; I had to be there when they became one.

My mother got worse very quickly (as had my father) and became even more combative. Then, she couldn’t, or wouldn’t, do anything herself. She had diabetes and emphysema (which convinced me to finally quit smoking). But I had a family, and more and more I had to be home for teenagers who needed rides and the such. Everyday visits turned to three times a week and weekends. In a short time her beautiful hair turned completely gray and scraggly, her teeth began to fall out, her memory got worse, and she was relegated to wearing adult diapers. However, it was two months until my daughter’s Bat Mitzvah (when a girl turns thirteen and is allowed to read from the Torah) and I was busy planning the ceremony and reception. To my amazement, my mother kept talking about how she couldn’t wait to go. She was subconsciously willing herself to live; she wanted to see her grandchild become a woman in the eyes of her faith. It was the one thing she refused to forget.

We hired a nurse for the day of the celebration, had a hair appointment set up, and clothes picked out for my mother. We thought she might last through a half hour of the two-hour service, but she sat there in the front row with the rest of the family and lasted the whole time. I suggested to my brother that we allow her to go to the reception for the cocktail hour. She made it through the hour as if she were the honoree. People came up to her, and I never saw her smile so much. It was as if the disease had disappeared. After the cocktail hour, the candle lighting ceremony began. My mother was called up to light the second candle, after my daughter lit the first one in memory of my father. My brother wheeled my mother up to the cake in the middle of the dance floor (to a standing ovation) and led her to her granddaughter. My mother took the long candle and blew it out. Everyone laughed and so did she. Re-lit, she was directed to light a candle on the cake. She then leaned in toward my daughter to give her a kiss, got back in her wheelchair, and waved to everyone, most with tears in their eyes. (My mother was such a diva.) We were about to have the nurse take her back, but dear ol’ mom was having a grand time. She ate more than usual, with her six grandchildren around her, then left the reception after dessert. It was a miracle. Somewhat like the miracle of my father squeezing my hand right before he died.

It was one of the happiest days of my life.

For two obvious reasons.

Shortly afterward, my mother no longer remembered her grandchildren, then her children and my father (an Alzheimer’s victim forgets the most recent memories first and the oldest ones last). By then, she was completely bedridden. She forgot how to eat and swallow and the doctor said it was a matter of weeks. We decided against any life support, because it was in her living will, and she quickly shriveled up into a shell of herself. It was horrible to witness. Some people say they can’t handle that and they leave their parents to die alone, but my mother would never have left my side, no matter how painful it was for her to see me in that state. I wasn’t going to leave her.

For three weeks, my mother lay in a coma. And for three weeks we were there by her bedside. It was our duty, what we expected of ourselves, the right thing to do, as I explained to my two teenagers. By the third week of her coma, her weight had dropped to less than 70 pounds and she developed pneumonia. Her breathing became labored. Her emphysema became worse and her throat kept filling with phlegm. One episode was so frightening that she started to turn blue from asphyxiation. I put a surgical glove on my right hand, put my left arm behind her back, and bent her forward, hoping she would cough it up. When she didn’t, I stuck my fingers down her throat and pulled out a large mass. She began breathing normally again. Yes, at this point I wanted my mother to die, but I wanted her to die peacefully.

After three weeks in a coma, we were all sitting in my mother’s hospital room: Me, my wife and kids, and my brother, his wife and son. It was the High Holy Day of Rosh Hashanah (the Jewish New Year, the ten-day period where you atone for your sins), and we had just returned from services. Suddenly, we heard, “What are you doing here?” It was my mother’s weak voice. Now, all my life my mother told us that God makes sure the Jewish New Year is filled with sunshine (and most of the time she was right). Upon hearing her, I noticed the sun shining through her window (she was right again). We turned toward her in shock.

My brother went up to her bedside. “Mom, do you know who I am?”

She said, “Of course, you’re Barry.”

He asked her, “Are you hungry?”

In her typically old Jewish way, she answered, “I could eat.”

“What’s your favorite food?”

“You know, vanilla ice cream.” (It was.)

He went and got her a Dixie cup of vanilla ice cream and began feeding it to her in little increments. She kept saying, “Mmmm.” When she finished the entire cup, she said, “I’m tired now.” Every one of us leaned down to kiss her and she kissed each of us. She closed her eyes and fell back into her coma. We all looked at each other, asking, “What was that?”

It was my mother saying goodbye to us, as my father had done when he squeezed my hand. It was my mother telling us everything would be alright. It was my mother telling us to go on with our lives, that she would always love us.

It was my mother being a mother one last time.

Three days later, at eighty years of age, a wonderful lady passed on. She passed on to a better place, filled with many memories of reciprocal love and devotion.

How do we stop this? If we had the answer, tens of millions of people would not be going through this agony, and tens of millions more caregivers, like myself, would not be faced with emotional and financial suffering for years on end. Presently, there are almost 5 million Alzheimer’s victims in the United States, and 18 million worldwide. The Alzheimer’s Association projects those numbers will quadruple in the next twenty to thirty years (that’s 72 million people!), causing immeasurable hardship for everyone, as well as for governmental health coverage.

The governments of the world, and the people of the world, need to take responsibility and start fighting this terrorist now. We must all be our brother’s (and sister’s) keeper. Otherwise, Alzheimer’s disease will be the Baby Boomers’ swansong.

Should our children be forced to worry even more in their lives? Should they be forced to watch their loved ones live such a brutal end? There is a vicious killer attacking without regard to race, religion, or nationality, and if we let it continue to fester and spread, we will soon have an epidemic of unimaginable proportions worldwide.

Something must be done!

We are a world made up of good people, loving people, as proven by the relief visited upon the tsunami victims. Billions of dollars of aid came pouring in from all over the world, from people and governments. Can’t we do the same for killer diseases? More people die each year from cancer, heart disease, and Alzheimer’s disease than from tsunamis, hurricanes, tornadoes, and earthquakes combined. If we all take an active part in making our lives safer, even in the smallest of ways, collectively we will make a huge difference. As I experienced with my parents’ disease, little miracles happen when your spirit leads your way. It’s time we all come together and create a big miracle.

ALZHEIMER’S DISEASE (according to the American Alzheimer’s Association)

STATISTICS:

• Increasing age is the greatest risk of getting Alzheimer’s disease.1 in 10
• individuals over the age of 65, and 50% over the age of 85 suffer from it. Some
• forms of Alzheimer’s can strike individuals in their 30s and 40s.
• Life expectancy averages from 8-20 years after diagnosis.
• 7 out of 10 people with Alzheimer’s live at home – with 24/7 care required.

ALZHEIMER’S PATIENTS EXPERIENCE:

• 3.4 times more hospital stays than patients without the disease.
• 3.2 times higher costs for hospital care ($7,074 vs. $2,204/person).
• 3.8 times higher medicare home health care costs ($748 vs. $190/person).
• 1.3 times more physicians visits (14.4 vs. 1.3 visits/person)

ALZHEIMER’S COST TO GOVERNMENT, LONG-TERM CARE, & BUSINESS:

• Alzheimer’s is the 3rd most costly disease after heart and cancer and unlike these others there is no cure.
• By 2010, Medicare costs are expected to increase 54% from $31.9 billion dollars to $ 49.3 billion.
• By 2010, residential dementia care will increase 80% from $18.2 billion to $33 billion.
• Cost to American businesses is $61 billion yearly: $24.6 billion for Alzheimer’s healthcare and $36.5 billion to cover caregivers’ costs for lost productivity, absenteeism, and worker replacement.
• Half of all nursing home residents have Alzheimer’s or related dementia with an average cost of $50,000-$100,000 yearly in many locations.

ALZHEIMER’S IS ON THE RISE AS A MAJOR KILLER:

• Heart disease is down 3%.
• Cancer is down 1%.
• Cardiovascular disease is down 2.8%.
• Alzheimer’s disease is up 5.8% - with deaths up over 20% since 1999.

Bruce Schwartz is a political activist and author of the #1 Amazon bestseller, THE TWENTY-FIRST CENTURY, the story of a nationwide terrorist attack, which ignites a race/class war seven days before the American presidential election. He has also written other novels, three children's books, and six musicals. He is presently writing the screenplay for THE TWENTY-FIRST CENTURY, as well as a weekly TV dramedy. He has received numerous accolades for his writing. His site http://www.thetwentyfirstcentury.com is offering a 3-day, 2-night vacation to one of 90 destinations (no time share, no sales pitch of any kind) for buying a copy of this timely and topical novel. He will also autograph the book for you.

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