Thursday, April 19, 2007
Mom and Dad on Their Own
We are in an interesting period with Mom and Dad.
Some weeks have been filled with crises: Dad's arm suddenly swells up. Or his leg is inflamed with cancerous sores. Or
Mom has dizzy spells or begins to forget the names of close relatives.
At those times it seems that they are on the slippery slope. The only directions things are going is downhill. All of
us kids start thinking the end is right around the corner.
And then there are times like the one we are in now.
For weeks (months?) my parents have been stable. Dad is weak and feeble. Mom is forgetful and emotional. But when a new
day dawns the two of them are pretty much like the way they were the day before.
Since no new crises occur, my parents seem capable of managing things on their own. Dad refuses to hire professional
caregivers and continues to enlist a ragtag band of friends and helpers on an ad hoc basis to do his shopping, drive him and
mom around, take care of errands.
So we kids pull back. Lisa goes off to California on vacation with her husband John. Owsley drives down to Hatteras,
North Carolina, to do kite boarding. Tim sits over at the Towne House, watchful and caring, but convinced that Dad is a stubborn
goat and that he will accept his offers of help only if he is incapacitated.
(The other day when the storm knocked out my parents' power, Tim offered to pick them up and take them to his house for
the night. Dad refused. Instead, he and Mom secretly drove their car through the storm to a local motel for the night.)
So we wait and watch. And hope. We hope that our parents' relatively good health stays intact. They are not the people
they once were, but they are survivors. And they are still on their own. With Dad around, they still call their own shots.
One never knows what tomorrow will bring. But for the moment, life is good.
Wednesday, April 18, 2007
Back Home from the Love Nest
The other day, in the middle of a giant storm that was ravaging the Northeast, my parents sneaked away from their dark,
cold apartment and quietly retreated to a little room on the first floor of the Macintosh Inn, in Lima, Pennsylvania.
I called them this morning to check up on them. My Mom answered the phone. That meant they were back in their apartment.
I asked if she had power and heat, and she said yes. I asked how she and Dad had survived their adventure the other night
at the Macintosh Inn as refugees from the terrible winter storm.
"I felt like I was on my honeymoon," Mom said.
I asked her how she and Dad had gotten along. I heard Dad in the background say, "Our bed was too small."
"Babe didn't like the bed," Mom said. "But we got along just fine. I was all over him."
"Wow! Mom!" I said. I wondered if I had just been a victim of "TMI" (Too Much Information!).
"Yep!" said Mom. "It was pretty neat. Now they're predicting more snow. Maybe we'll do it again."
In the background, I heard my dad groan.
Tuesday, April 17, 2007
Babe & Libby Escape the Storm
The MSNBC
headline was grim: "No Letup in Sight as Storm Lingers in Northeast." Another headline: "Weather System Leaves Devastation from South
Carolina to Maine -- 15 Dead."
Pennsylvania, where my parents live, was right in the middle of this "historic storm." During the long weekend, torrents
of rain fell. Then it snowed. Then freezing rain left everything covered in ice.
I called yesterday to check on my parents and couldn't reach them. Alarmed, I called my brother Tim at the Towne House
Restaurant. "They're home," Tim said. "They have no power and no heat. But Dad refuses to move. I've invited them to come
to my house, but I can't make them come."
I called my parents and reached them at home. "What's going on?" I asked Mom.
"It's cold. It's dark. We have no TV, no heat. I want to get out of here, but your Dad says we are staying put."
I asked Tim to speak to them. I had my cousin Dot D'Ignazio try to move them. Tim's son Andrew dropped by to appeal to
them.
No luck.
At around 6 PM it was beginning to get dark. I was really getting worried. I called their house. No answer.
I called the Towne House and asked if they were there. "No," said Kelly the hostess, "but I know where you can find them."
"Where?"
I asked.
"At the Macintosh Inn, room 229," said Kelly.
I immediately called the Macintosh Inn, a small motel about 5 miles up the road from their apartment.
Mom answered the phone. She was stunned to find I had tracked them down. (Hmmm ... not too hard. After all, the Towne
House hostess was giving out their room number.)
I asked Mom if she was okay.
She was much calmer than earlier in the day. "Oh, yes," she said. "We have heat, a shower, a toilet, and a bed. And we
have TV!"
I got my Dad on the phone.
"It's so hot in here, I feel like a roast turkey," he said. "Your Mom got in the room and turned the heater up full blast."
"How did you get there?" I asked, not really wanting to know.
"I drove and your mother navigated," Dad said.
"Great," I said. (At least they made it there in one piece.)
"You will never know what I went through getting your mother here," said Dad. "But we made it, and we're fine. Thank
you for checking in on us. Good night."
(click)
Monday, April 16, 2007
The Oddball ERP Test for Alzheimer's
In this blog I have reported on different ways for people to get tested for Alzheimer's Disease during a normal visit
to the doctor's office. I have expressed the heebie-jeebies I feel when I think about getting my spine tapped to test for
Alzheimer's. A spinal tap is one of the best early-diagnosis techniques now available, but I think there ought to be a better
way.
The better way may be the
Oddball ERP Tone, pioneered by scientists at Rowan University in New Jersey. It doesn't involve having your spine tapped or being fed into
a claustrophic, expensive new high-tech brain scanner. Instead scientists use the "old-fashioned" EEG -- Electro-Encephalgram
--machine that has been around for the last 78 years.
Here is how it works:
First, you have sensors placed on your head attaching you to the EEG machine. Your doctor puts headphones on you and
starts "pinging" your ears with some high- and low-frequency sounds. Your brain automatically signals your doctor when you
hear the sound by showing brain-wave spikes, or peaks, on the EEG display.
Second, your doctor plays a special high-frequency sound called the oddball ERP tone. If you don't have dementia,
your brain-wave peaks occur in just 300 milliseconds (three-tenths of a second). However, if you have dementia (including
Alzheimer's) the peaks are significantly delayed.
(Why is this? Scientists don't know. But it may be that the tone affects the part of your short-term memory that has
been damaged by Alzheimer's. It takes your brain longer to process the sound and signal that you have heard it.)
Right now the test is experimental and has an accuracy rate under 90-percent -- the gold standard for Alzheimer's Disease
diagnosis. However, this standard is available to you only if you go to a world-class Alzheimer's facility and get diagnosed
by a world-class expert. Most of us don't have this option.
Most diagnoses of Alzheimer's have a lower accuracy rate. If we want to be certain that we have Alzheimer's, we get our
brain autopsied. Unfortunately, this knowledge doesn't help us much since we are already dead.
For a less painful -- and terminal -- form of early diagnosis, you might consider getting your ears pinged with the Oddball
ERP tone. I'm hopeful that the test will be coming soon to my doctor's office in North Carolina.
Friday, April 13, 2007
Disabling the Enabler?
Just a brief note tonight.
Last year Mom and Dad were in the Florida Keys. They had a full-time caregiver -- my brother Owsley. He did it all: he
cooked, he cleaned, he acted as handyman and nurse. My parents were blessed.
This year it's different. This year Mom and Dad are still tucked away in their little apartment in Media, PA.
And where is Owsley?
He's gone to his home in Bethany, Delaware. After that he's on the road to Cape Hatteras, North Carolina, to do some
kiteboarding.
My parents are on their own.
Is this good or bad? It's bad from the point of view that my folks need lots of extra assistance. But it's also good,
because, in a sense, Owsley is an enabler. He enables Dad to keep from hiring a full-time professional caregiver. Owsley is
so good that when he is around, who would want to hire someone to replace him?
But now he's pulled back, and he's doing some things he wants (and needs) to do.
For the moment, Mom and Dad are stable. They are sailing along each day pretty much without huge mishaps, health emergencies
or crises.
Let's see how long this lasts. And when it comes to an end, who are they gonna call?
Owsley?
Or maybe someone new ...
Thursday, April 12, 2007
Genes and Alzheimer's
One out of every seven people carries a gene that causes their bodies to create a lipoprotein -- a molecule
that is part fat and part protein -- known as Apo-E4. If you inherit the E4 gene from one parent, your risk of Alzheimer's
rises three times. If you inherit the E4 gene from both parents, your risk shoots up 10 times.
Scientists already knew this. Now, thanks to a
study done at the Oklahoma Medical Research Foundation (OMRF), scientists know why it happens.
Fatty lipoproteins naturally enter the brain, all the time. However, if they are E4 proteins they have a tendency
to "glue" themselves to a brain receptor (another protein) on the surface of a brain cell -- a neuron.
This mass of protein and fat gets swallowed up into the neuron. Unfortunately, along with it come some of the cutting
enzymes (proteases) that dwell on the surface of the neuron. These enzymes act like little knives, and they slice and
dice the protein chains inside the brain cell into the gluey protein fragments -- the amyloid plaque -- characteristic
of Alzheimer's.
Just like plaque on your teeth, it's not a good thing. The plaque accumulates and eventually destroys the brain cell
from the inside out.
All people have fatty proteins (lipoproteins). But only a minority have the E4 protein. The other types -- E2 and E3
-- are much less often associated with Alzheimer's Disease. It is the E4 protein that is usually the culprit for triggering
the nasty brain plaques.
OMRF scientists are the first to lay out the entire process of the disease among people with the E4 gene. Now that the
process has been described, scientists can work on ways to disrupt the process and hopefully prevent the disease.
Tuesday, April 10, 2007
The Check Is in the Mail!
My mom has always supported me, no matter what I've done. She was one of the loudest, most partisan fans in the bleachers
when I used to play baseball for the old Towne House baseball team, back in the 1950s and early 1960s. She supported my going
to Mexico to learn Spanish -- all by myself! -- in 1963. She supported Janet and me when we got married in 1969. And she became
a computer expert back in the mid-1970s and early 1980s, so I could write articles on her and feature her in the TV shows
I hosted during those years.
Mom continues to support me.
The other day I called her to see if she would make a donation to the Race of Grace. The goal of this race is to raise
money to support families who lack adequate health care. Mom immediately said she would support the race. I asked her to send
a check to my address, and she said she'd get it off the next day.
The next day I asked Mom again if she was going to support the race.
"What race?" Mom asked.
I explained again, very patiently, what the Race of Grace was all about. Once again, Mom agreed to sponsor the race by
sending a check.
The next day I called Mom again. This time Mom remembered the race but had lost my address and information about writing
the check.
I gave her the information.
I called her yesterday. Again, Mom had to look up the information. She promised to mail the check today.
I called Mom today. Victory! She had taken the check to Dad's secretary Barbara. Both Dad and Mom assured me that Barbara
had already mailed the check.
Working with Mom can try one's patience, but it's worth it. I will get Mom's valuable support for my fundraising. And
I will be sure to communicate my gratitude to Mom over and over again. She may not remember it, but her son will tell her
again and again how wonderful she is.
It's a win-win for both of us and a valuable boost for a worthwhile cause.
Monday, April 9, 2007
Memory vs. Remembering
National Public Radio has a regular Monday morning segment called, "This I Believe." Listeners write a brief essay on
a belief they hold central in their lives. If NPR likes their essay, they call the person and the person gets to
read their essay aloud over the air.
Today's "
This I Believe" segment was written and read by Christine Cleary, a communications manager at Dana-Farber Cancer Institute in Boston.
Christine recently lost her 44-year-old husband Ed to cancer and her mother to Alzheimer's Disease. In her essay entitled,
"The Deeper Well of Memory," she writes about the difference between remembering and memory.
After observing her mother's progressive loss of memory, Christine was afraid she would lose not only her husband Ed
but also her memories of Ed. She began acutely observing Ed to try to remember his special gestures and qualities that
made him unique:
... [From] the day of Ed's diagnosis until his death a year later, I set out to memorize him: his
crooked smile and vigorous embrace, his woodsy smell and the way he cleared his throat when he reached the top of the stairs.
I knew I'd always be able to recite his qualities — kind, gentle, smart, funny — but I wanted to be able to conjure up the
physical man in my mind, as fully as possible, when he was gone.
Ed died, and all that remained of him were Christine's memories. She had memorized hundreds of details about her husband,
but then something happened that showed her that memory and remembering were not at all the same. In her essay she writes,
"I found that memory has a will of its own."
The myriad details of Ed and his life were important. This is "remembering." But memory is something far more powerful.
It is quirky, but when it strikes, it recreates a person's presence, almost as if they were still living and sitting right
beside you.
Christine describes this experience in a moving passage:
Recently when I was driving, I had a deep and sudden sense of Ed and the way it felt to have him next
to me in the car. My body softened as it used to when we were together seven years ago, living a shared life. I wasn't remembering
his face or the way he walked; the careful details I had stored had nothing to do with this moment in the car. Looking in
the rearview mirror, I recognized in my own face the same look I once saw on my mother's face in the nursing home. I had asked
her a question about my father, and she became confused about his identity. Yet, as she sat there, dressed in a shapeless
polyester outfit, she briefly appeared young and radiant, her face filled with love and her eyes misty. Her brain couldn't
label the man correctly, but that was not important. It was clear to me that her husband was vivid in her heart, a memory
even Alzheimer's could not crush.
I believe there is a difference between memory and remembering. Remembering has to do with turning
the oven off before leaving the house, but memory is nurtured by emotion. It springs from a deeper well, safe from dementia
and the passage of time.
I recommend that you visit Christine's essay online and click on the link to hear her read her essay aloud.
Friday, April 6, 2007
Alzheimer's Cause and Cure Checklist
I came across a terrific
article in The Connecticut Post today on Alzheimer's Disease. In the paper's "Ask Dr. Bea" column, Bridgeport geriatrician
Dr. Beata Skudlarska gives an overview of Alzheimer's causes and cures. It is a great article that sums up dozens
of my blogs.
ALZHEIMER'S CAUSES
- Protein plaques and tangles (however, these may be symptoms and not causes)
- A loss of the chemical acetylocholine that acts as a "taxi cab" to carry messages from one brain cell to another
- Too much electrical activity in the brain cells of Alzheimer's patients
- Problems in the blood vessels in the brain
DRUGS TO CURE ALZHEIMER'S
DRUGS TO SLOW THE DISEASE
- Drugs that protect acetylocholine so that brain cells can continue zapping messages to each other
- Drugs that quiet down the overactive brain cells
- Vaccines to prevent plaques and tangles from forming
- Drugs that prevent the inflammation of the brain's blood vessels
GOOD PRACTICES
Since there are no "cures" for Alzheimer's, here is the regimen Dr. Bea recommends to slow down the progress of the disease:
- Two or more of the above drugs (such as Aricept and Namenda -- what my mom takes)
- Active caregiving by the family and by professionals
- Strict routines (regular, repeatable schedules)
- Active use of the brain (games, puzzles, walking, socializing, etc.)
- Treatment for depression and anxiety
- Correction of any hearing or vision loss through hearing aids and cataract surgery or glasses
Mom had cataract surgery this past week on one eye. Her eye doctor will check her out in the next few days to see if the
operation improved her vision.
Thursday, April 5, 2007
Sniffing Out Alzheimer's Disease
Sometimes when I read about early detection tests for Alzheimer's it makes my skin crawl. For example, you can have your
spinal fluid tapped, and the doctor will tell you if you show early signs of Alzheimer's.
But who wants a spinal tap?
Not me. I'd rather have the "sniff-to-learn-if-you-have-Alzheimer's" test I read about yesterday at the
Associated Content website. The test, called SMT (Sniff Magnitude Test), is composed of three strong smells: banana (the good smell), rancid
meat and ripe, pungent cheese, and a burning smell mixed with skunk.
Yuck!
The smell test works because of two things connected with people's brains: (1) Our sense of smell is very sensitive;
and (2) There is very little space in the brain devoted to smell. Since so little of the brain is reserved for smelling, then
if a piece of that gets damaged (think "Alzheimer's!"), it alters our sense of smell dramatically. We either can't
smell at all, or else we smell weird things and can't recognize familiar things.
When normal people smell the strong odors in the SMT test they do the normal thing: they recoil! Pee-Yew! Nobody
in their right mind wants to sit there immersing themselves in skunk. But a person who has Alzheimer's may have amyloid
plaques clogging up their smell center. When they take the SMT test, they miss the skunk, the ripe cheese, and the rancid
meat, and they keep breathing in the smell as if they were smelling a daisy or fresh-cut grass.
The SMT is the test for me. Skunk is not a nice smell, but it sure beats having doctors stick a needle up your spine.
Wednesday, April 4, 2007
Hearing Their Voices
People with Alzheimer’s Disease are speaking out. Two and a half million of the five
million Americans who have Alzheimer’s are in the early stages of the disease. They are still relatively high functioning.
In addition there are 200,000 to 500,000 Americans who have early-stage Alzheimer’s. These are people who are in their 50s
and 60s. They are still active, and they resent being pushed aside by caregivers who lack the patience and knowledge to adapt
to their condition.
People who are newly diagnosed with Alzheimer’s
have a two-year to five-year window of opportunity to lead relatively normal lives. For the first time they are raising their
voices together and protesting the way they are being treated.
According to a front-page article in the
March
29, 2007 New York Times, Alzheimer’s doctors, social service agencies and advocacy groups are responding
to Alzheimer’s victims’ complaints and demands. They are setting up Alzheimer’s patient support groups and social networks;
they are creating training courses for people with Alzheimer’s and their spouses and family. They are even setting up speaker’s
bureaus so people with Alzheimer’s can “go public” and tell people what their real needs are and how it feels, firsthand,
to experience the disease. According to the Times:
Out of their individual frustrations,
these patients are creating a grass-roots movement to improve services and change public perceptions. And they are making
a mark.
One of the biggest problems currently is
that caregivers (often a husband or wife) are unwilling to relinquish their control over the person with Alzheimer’s. They
still feel that Alzheimer’s has a stigma attached to it, and they are unwilling to share their situation with other families
and with the public. For example, New York University
organized a six-session training program for Alzheimer’s patients and their spouses. Two hundred couples were invited, but
only sixteen showed up. According to the Times, “Most married couples still do not welcome frankness.”
However, it is this frankness that people
with Alzheimer’s are seeking. They lack the memory, concentration, and verbal abilities they used to have. They think in a
spotty, non-linear way. But, with patience, they can still be engaged in discussions about their welfare and their future.
It still their life and they are asking to be heard.
Tuesday, April 3, 2007
We're Still in Bed
I called Mom and Dad today at 8:30 AM. Dad sleepily answered the phone.
"Uh-oh!" I said. "I woke you up. I'll call back later."
I called them back at 9:30 AM.
"Hello?" said Mom in a sleepy voice.
"Oops!" I said. "I'll call back later."
I called back at 11:30 AM.
Dad answered the phone. "We're still in bed," he said, not waiting to see who was at the other end.
"Should I call back later?" I asked.
"Nope," said Dad. "I think we're getting up. Here's your mom."
Mom picked up. "Hello?" she said. Her voice still sounded sleepy.
"What's up?" I asked. "Not you and Dad. You guys are a couple of sleepyheads."
"I'm getting up," Mom said. "I'm going to make breakfast."
Monday, April 2, 2007
Is He Here?
I visited my mom and dad recently in Pennsylvania.
I lived with them two nights and three days. It was a great visit. Both my parents seemed content. Their health was better
than it has been in quite a while. But Mom still had mental lapses.
For example, we were sitting at a table
in the Ranch Room at the Towne House Restaurant. Dad started the Towne House more than fifty years ago. The Ranch Room is
one of the oldest rooms, dating back to the early days of the restaurant.
Dad and Mom show up almost every day at
the Towne House, for lunch and dinner. Sometimes they eat in the the Towne House's oldest room, the Stag Bar; sometimes they
eat next door in the Ranch Room. I often think: What good planning my parents had, back in the 1950s, to create their own
personal “senior citizens cafeteria” where they could dine in the company of an adoring staff and an unending parade of reverent
customers. How many seniors in their eighties have it so good?
Anyway …
So there we were in the Ranch Room: Mom
was talking about the weather. We were waiting for our lunch and waving to everyone as they passed our table. (I
felt as if I was Tony Blair and Mom was Queen Elizabeth.)
“Mom,” I said, out of the blue. “Uncle
Leslie sure was a funny guy, wasn’t he?”
Mom’s brother Leslie was a funny guy. He died almost fifteen years ago, in the early 1990s. But in the thirty years that I knew him,
he was a lovable character. He was my friend.
“What’s that?” Mom asked. “Leslie? Is he
here?” Mom got up from the table and looked around the dining room. “I don’t see him,” she said, still looking around. “Is
Leslie alive? Where is he?”
“No, Mom,” I said. I reached for Mom’s
hand. I was badly shaken. I hadn’t meant to start anything. “No, Mom,” I repeated. “Uncle Leslie died a long time ago. He’s
not here. I’m sorry. I was just remembering him.”
“Oh,” said Mom.
Then she sat down and went back to talking
about the weather.
