The National Institute on Aging estimates that 4.5 million Americans suffer from Alzheimer's disease; about 150,000 in North Carolina and an estimated 70-75,000 in East North Carolina. When caregivers (spouses, siblings, children, and extended family) are added, those numbers quadruple. Cost to our society is in excess of $100 billion each year; $61 billion attributable to lost business production, caregiver illness, long- term-care and medical insurance. A recent Gallup poll indicates that 1 in 10 Americans have a family member with Alzheimer's disease and 1 in 3 know someone who has it. These statistics will continue to increase as our population ages unless a cause and cure is discovered.

A residential facility for persons with chronic illness or disability, particularly older people who have mobility and eating problems. Also called a convalescent home, long-term care facility.

 

NO CARE - I live in the regular community.

LOW CARE - I move to a retirement community.

MEDIUM CARE - I move to an assisted-living facility.

MEDIUM/HIGH CARE - I am transferred to a nursing home.

HIGH/INTENSIVE CARE - I am admitted to a hospital.

HUMANE DEATH - I am sent to a hospice to die with dignity.

Depression is very common among people who have Alzheimer's disease. In many cases, they become depressed when they realize that their memory and ability to function are getting worse.

Unfortunately, depression may make it even harder for a person who has Alzheimer's disease to function, to remember things and to enjoy life.

My sister Lisa says that she thinks that mom is insecure. Mom can see herself losing her memory, and she has become more cautious and unsure of herself in social situations.

Mom's insecurity and anxiety would also explain her outbursts of anger. Mom's anger is legendary. She is fine one moment, then ranting and raving only moments later.  According to Alzheimer's Disease International:

From time to time, the person may become angry, aggressive or violent. It is not a personal attack on you, but a part of their illness. There are many reasons why a person with dementia may feel angry. They may not like being helped with things they used to do on their own, or may simply be frustrated due to an inability to do things.

These short-term changes happen for a variety of reasons such as the person's sense of loss of social control and judgment, loss of the ability to express negative feelings safely, and loss of the ability to understand the actions and abilities of others.

My sister Lisa is currently looking for a caregiver for my Mom. This caregiver will serve two strategic functions: 1. She (my Dad says it must be a "she") will help take the burden of caregiving off my dad's shoulders. And, 2. She is the alternative to having Mom go into an institution, something Dad has told us he won't tolerate.

There are three strong candidates as caregivers for my mom. They are spending time with Mom and the family. We'll see which person works out.

All of us are trying to give our dad more help with Mom. But the person who has done the most caregiving (other than my dad) is my brother Owsley. Owsley has been my parents' default live-in caregiver for weeks at a time. Owsley is incredibly devoted to my parents. He watches them like a hawk. And he is very practical. He can make home repairs, cut my father's toenails, and cook my parents a nutritious dinner. He does it all. But even Owsley has begun to feel overextended.

The long and winding road that leads to your door,
Will never disappear,
I've seen that road before

It always leads me here,
leads me to your door.

 

- Beatles, "Long and Winding Road"

A disease marked by the loss of cognitive ability, generally over a period of 10 to 15 years, and associated with the development of abnormal tissues and protein deposits in the cerebral cortex.

[After Alois Alzheimer (1864–1915), German neurologist.]

Even more sobering is the description I found at Aricept.com:

About 4 million people in the U.S. have Alzheimer's. It is an illness that makes it hard for people to remember, think, and use language. It can make them act strange or seem moody. After a while, people with Alzheimer's have a hard time with things like using the phone, cooking or handling money.

I wondered if Alzheimer's Disease was just a normal part of aging. After all, my mom is 81 years old. And she is pretty spry for 81! (Even this summer she was still out on the tennis court hitting balls with a friend!) People are living older, and very few of us remain as sharp as we used to be back in our 20s and 30s. Wasn't Mom's "fuzzy thinking" just a natural part of her being in her 80s? Sadly, not. According to MedicineNet.com:

Alzheimer's disease is not a normal part of aging and is not something that inevitably happens in later life. Rather, it is one of the dementing disorders, which are a group of brain diseases that result in the loss of mental and physical functions.

But there was still hope. My mom is a feisty person. She has always been in good physical health. She exercises daily. She is stubborn and strong-willed. Surely now that she had been seen by doctors at Mayo, they would give her something, and she could recover from Alzheimer's?

Unfortunately, the odds are against her. According to the New York Times' About.com: "At the present time there is no treatment to cure or stop the progress of this disease."

What did the world-famous doctors at Mayo tell my mom when they sent her home? They said: "Get lots of exercise. Keep busy. And take your medicine." That's it.

And pray. My mom is a lifelong Episcopalian (or "Anglican Catholic," as she calls it.) She is good at praying. But I think as good as she is, she is going to need a lot of help.

When Mom is down at the seashore in the summer she walks two miles a day on the boardwalk, swims in the bay, and rides her bike. At home in Media, PA, she goes for long walks with my younger brother Tim. So she is keeping physically active.

About.com says there are effective drugs out there. But they can't cure the Alzheimer's. They just buy you time:

The FDA (Food and Drug Administration has approved five drugs that may temporarily relieve some of the symptoms, they are Donepezil (Aricept), tacrine (Cognex), galantamine (Razadyne, changed from the trade name Reminyl June 2005), Rivastigmine (Exelon) and memantine (Namenda).

Mom takes Arecept and Namenda. She has been taking both these drugs daily ever since her visit to the Mayo Clinic.

Are these drugs helping her? I'm not sure. The other day I called her on the phone and told her how excited I was that I might be writing children's books again instead of what I've been doing for the past year. I had called mom because whenever I have good news she is always so positive and supportive. I figured I'd get an enthusiastic congratulations and some eager questions. Instead she said: "What have you been doing for the last year?"

I was shocked. I call my mom and tell her about my life almost every day. She has been my coach and head cheerleader of my life ever since I was born. She's even visited the Whole Foods Market in North Carolina where I'm a baker.

I asked her: "C'mon, Mom. What do you think I've been doing for the last year?" Maybe she was kidding me or she just didn't know what I was talking about.

But she wasn't kidding. "What have you been doing?" she asked, getting impatient.

"I've been a baker, Mom. A baker." I tried not to let the hurt and the surprise and the disappointment show in my voice. But I'm sure some of it seeped in.

"Oh," she said, flatly. "A baker."

We talked a bit more, then I told her I loved her and she told me that she loved me. And we hung up.

And then I began to cry. Where had my mom gone? The person I've come to my whole life, the person I can tell everything to, suddenly didn't have a clue what I'd been doing the last year of my life. It was as if that whole year just shriveled up and ceased to exist. Without mom to witness its existence, who's to say it was real. Mom had always been my reality check. I looked in my mom's eyes and I saw me. I told mom who I was that day, that month, that year. And she always responded, "Yes, I know! That's great!"

We had honored a 56-year conversational pattern of "serve" and "return," just like in a tennis match. When I was growing up Mom and I used to play tennis together a lot. Mom is a strong tennis player and she almost always beat me. So this time when I told her about my life, I was serving another ball to her side of the court. Just like I had always done. But this time, she didn't hit it back.

She is standing right in front of me
Speaking words of wisdom, let it be.
Let it be, let it be.
Whisper words of wisdom, let it be

- Beatles, "Let It Be"