Alzheimer's: From Fear to Possibility, Knowledge is Power

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It was 6 am and I was deciding which suit to wear while thinking about the upcoming meeting at my corporate job. A man was flying in from Boston that morning specifically and solely to meet with me. Then I heard it… thump… followed by several sounds like children running down the stairs. Except that the “children” were my 85-pound boxer dog and my 10-pound cat, who were still in the process of meeting each other and therefore living in separate bedrooms. While I was positive that there was no way they could have gotten out, panic set in and I ran down the stairs. I followed the path of the noise I heard, turned right and ran through the living room to see the finish from a low table now embedded in the drywall where it had been body slammed by my dog as he passed in full pursuit of my cat. I rounded the corner of the kitchen, spotting what I later found out were canine and feline teeth on the floor, to see my dog in the entrance of my laundry room holding my cat in his mouth. Without hesitation, I opened my dog’s mouth and the cat instinctively jumped for higher ground, the top of dryer. Sadly, he overshot it and slid down the wall behind the dryer leaving a trail of blood streaks like you would see in some crime show. So I did what any 30-year-old single mom would do — I called my dad. Presumably having changed out of his pajamas, which honestly might have still been under his street clothes, and having traveled what should have been a 25-minute drive, Dad arrived in 12 minutes flat. Dad moved the dryer, and we retrieved the cat.

I called work and said that a man would be arriving from Boston expecting to meet with me soon and asked that they get him some coffee, possibly breakfast, in fact anything he wanted to pass the time until I could get to work. Dad headed to the vet with my daughter and my dog in tow, and I put on jeans and a sweatshirt creating my own casual day long before they were acceptable in corporate America. I wrapped my cat in a big towel and held him shaking in my lap while driving. What I didn’t anticipate was the amount of blood, let alone urine, that I would be wearing by the time I arrived at the vet. Dad stayed to handle the situation.

Then I had a choice to make. I could go home and crawl under the covers and hope that this heinous situation was just a really bad dream. But that really wasn’t going to work. I could go home, the opposite direction from work, and change; again not really a viable option. So I drove to work. As I exited the elevator I saw the always impeccably presented Administrative Assistant waiting to greet everyone who entered the 3rd floor. In response to the look on her face, I said “I have blood down my shirt and urine everywhere else, I have a meeting to attend for which a man flew from Boston this morning,” and walked on to meet with the gentleman. I apologized for my appearance and mostly for the smell. I really don’t remember but I imagine that the meeting took place in record time. And then I went home. I bet that there is a man who once lived in Boston that tells that very same story!

The point of the story is two-fold.

1. When you get up in the morning, you never really know what life has in store for you.

2. It is easy to hide under the covers, to make excuses, but sometimes you just have to suck it up and do what must be done, do the right thing.

My dad was always there for me. Then I got up one day, expecting something completely different than hearing that my Dad had been diagnosed with Alzheimer’s. I vowed to be there for him as he always was for me, and to protect his quality of life and make sure it remained meaningful. I did what needed to be done. No excuses.

Think for a moment if there has ever been a time in your life when you chose to crawl under the covers in an effort to ignore a bad situation, hoping that it would just go away. How did that work for you? I prefer to hit things head on and empower myself with knowledge. That is exactly what I did when I heard that Dad had Alzheimer’s.

Why Everyone Should Inform themselves about Alzheimer’s

In the old days, no one knew what Alzheimer’s was. Granny came to live with the family and was a little “senile.” The family kept her at home so that she would be safe, and no one thought much of it. Today the stigma associated with Alzheimer’s is that it is an assumed death sentence and that the person and their life are somehow less. The stigma is based on a lack of knowledge and resultant fear — and it must change. My mom didn’t want anyone to know that Dad was living with Alzheimer’s, because she feared how others would perceive him. That’s not ok.

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So much FEAR surrounds the disease. Some people fear being diagnosed with it. Others fear a loved one having it and how that would change their lives.

But if you educate yourself through reliable sources, you will have a clear understanding of what you are facing. You will clearly know your options and choices. You will make informed decisions and take action. You will have control over your fear.

Why Everyone Should Care

According to the Alzheimer’s Association, it is projected that by the year 2050 there will be 16 million people in the United States diagnosed with Alzheimer’s, requiring 80 million caregivers and totaling $1.1 trillion in costs. The U.S. population in 2050 is estimated to be 438 million. Over 21% of the population will either have or be taking care of someone with Alzheimer’s. Add the family members and friends of those with Alzheimer’s, and the percentage of those affected goes WAY up! Expand the statistics by the full spectrum of dementia and the numbers are quite literally unimaginable! Again, in the United States.

Globally 160 million will be diagnosed, requiring 800 million caregivers (twice the U.S. population) at an astonishing cost.

Imagine it’s the year 2020, and you get the call: “Mom has Alzheimer’s.” Just Imagine. How is that going to affect you?

Remember those staggering costs? Again, according to the Alzheimer’s Association, in 2017 payments for health care, long-term care and hospice services for those over 65 with dementia were approximately $259 billion. Additionally, individuals caring for someone with Alzheimer’s often incur a financial cost, providing for expenses out of pocket and often losing income due to work absences. Along with the financial toll, the potential health toll, both physical and emotional, is well documented. If you are in the sandwich generation, caring for both children and parents, the stakes are even higher.

We are facing an epidemic, and we must prepare to handle Alzheimer’s and other forms of dementia. How? By understanding the disease and opening our minds to new perspectives on life with the disease. Read Part 2 in this series: The Facts and the Myths.

Parts of this series contain excerpts from A Most Meaningful Life, my dad and Alzheimer’s … a guide to living with dementia.

For 2½ years, I provided full-time care of my parents, one with Alzheimer’s, delivering the care and end of life they desired. Since their passing in 2014 I have been on a mission to help others see that even with Alzheimer’s the possibilities are limitless and a meaningful life is possible, that death is due its dignity, and that everyone deserves compassionate and dignified care.