Wednesday, May 31, 2006
I Have a Nice Mom!
This is going to be a brief blog today. Brief but important.
My mother is suffering from Alzheimer's Disease. She is extremely forgetful and her moods are mercurial. She is
happy, sad, angry, frustrated and bewildered, all in a few moments. I saw this when I visited her in New Jersey this past
weekend.
Mom may not be the person she used to be. But she hasn't lost one of her most defining characteristics: she's nice! I
don't mean sort of nice, I mean really, really nice.
When I arrived the other day, she didn't have a clue that I was coming, even though I had spoken with her daily to remind
her that I was on my way. But as I got out of my car and walked up to the sidewalk to greet her and hug her, she broke into
tears and told me how wonderful a surprise it was to see me. At 81 she has become quite a tiny, little person. But that didn't
stop her from giving me a great big bear hug to show me how happy she was to see me.
I may be 57. But hugs from my mother -- really big, loving hugs -- are still very special.
BED ELVES
I stayed with Mom and Dad at their home in Avalon, New Jersey, for four days. Every morning Mom greeted me happily and
warmly.
One morning I went out for an early run, and I felt guilty not making my bed. I got back around 8 AM, intending to make
my bed.
The bed was already made. My room was straightened up. The windows and door were open to the upstairs porch to let fresh
air and morning light into the room.
It was as if elves had visited my room while I was gone.
Mom didn't say a word. But I knew who my elves were.
NICE TO EVERYONE
While I was in Avalon I watched Mom interact with lots and lots of people. She clearly wasn't at the top of her game.
She couldn't remember people's names, and she often seemed at a loss about details. But that didn't stop her from being nice.
She was equally nice and caring to everyone she met the whole time I was there. I had forgotten just how nice a person she
is. It was humbling just watching my mom in action.
Mom was even nice to strangers.
When a group of young, hip, twenty-somethings walked past our house one morning, Mom called down to them with a big "Hello!"
One of the girls, Jen, a total stranger, stopped. "Hello, to you, too!" she called back. "I can't believe it. We're just
tourists here. And you said 'hello.' You must be very nice. I'm going to come back and talk with you, okay?"
"Okay!" Mom called back.
Later I heard Mom talking about Jen. She was wondering when Jen was going to come back to talk with her. She had taken
Jen seriously.
And she remembered her name.
Tuesday, May 30, 2006
Mom's Brain Fires on All Cylinders
My mom has Alzheimer's. I visited her and Dad this past weekend at their home in Avalon, New Jersey. Compared to the
old days, Mom was not very sharp.
But she had her moments.
The night before I left we sat down to a delicious seafood dinner prepared by my brother Owsley. In addition to a gigantic
bowl of steamed shrimp, clams, delicious linguini and a killer white sauce, he threw in steak, salad and apple pie. It was
a true summer feast.
After we finished, we were all groaning from eating so much good food.
Owsley's daughter Curry was also visiting the shore. During the day she studied Physics while she lay on the chaise longue
on the back dock. At night she went to the nearby town of Stone Harbor to visit with her friends.
Curry helped Owsley get our seafood dinner together. When we sat down she pulled out a quiz she had developed for school
as part of a project on protecting coral reefs. For fun, she read the quiz questions aloud as we began eating dinner.
To my surprise, Mom did well on the quiz. She paid attention. She listened carefully. And she answered many of the questions
correctly.
I was blown away.
MY MOM THE REMOTE QUEEN
After Owsley's enormous dinner I staggered into the TV room to try to find the Stanley Cup playoffs on television. That
night my hockey team, the Carolina Hurricanes, was playing the Buffalo Sabres for the Eastern Conference Championship, and
I was eager to see if the game had started.
I found the TV remote lying on the coffee table in front of the TV. I wrestled and struggled with the remote, trying
to get it to turn on the TV, turn on the cable box, and find the channel for the hockey game.
It was pitiful. I couldn't even get the television to turn on. I punched all kinds of buttons on the remote and got nowhere.
In frustration, I threw the remote onto the couch and began pummeling the buttons on the front of the TV.
Then Mom walked in. "What's the matter?" she said.
"Uh-oh," I thought. "Now things go from bad to worse." My mother has never been proficient at using a TV remote. The
things bewilder and bedevil her. She struggles with them then flies into one of her legendary hissy-fits.
"Nothing, Mom," I answered. "I'm just trying to get the hockey game on your stupid TV."
(oops)
At that point I figured Mom would launch into a tirade on how difficult it is to control TVs. Then she'd finish her tirade
with a curse on all remotes.
But she didn't.
Instead she found the remote sitting on the couch, calmly punched a few buttons on the front of the remote, and,
voila!, there was my hockey game on the TV!
"Here," she said, handing me the remote. "Is there anything else I can do for you?"
I was floored. Was this the same mother who had Alzheimer's?
Mom left the room smiling and went back into the kitchen to tidy up.
Saturday, May 27, 2006
Do You Have Another Daughter?
I've spent the last two days here in Avalon, New Jersey, with my mom, my dad, and my brother Owsley. My brother Tim was
here the first day, but he had to leave shortly after I arrived in my rental car from the Philadelphia Airport. And last night
Owsley's daughter Curry came in. She and I have already had some very nice talks.
I've been on an emotional roller coaster the whole time I've been here. Dad has knowingly or unknowingly pressed my buttons
a couple of times and set me off. Each time I turned into a yammering fool and said things that shock me, before I calm down.
The incidents have been amazingly trivial. In one case I bought too much Sierra Pale Ale. In another I admitted that
one of Mom's church members was having a hysterectomy. In each case, Dad did his quiet little laugh of amusement, and I turned
into a screaming meemie.
I'm a 57-year-old man with three children of my own. But when dad does certain things or says certain things, suddenly
I'm five years old again.
THE MISSING DAUGHTER
The biggest part of my roller coaster ride is related to Mom. I've had several conversations with Owsley and Dad about
Mom. After each of these conversations I feel sad and depressed.
Talking with Mom also gets me down. Yesterday Dad asked about our three children -- Catie, Eric and Laura. I told Dad
and Mom about Catie and Eric. Then Mom looked at me and said, "Do you have another child?"
At first I was startled. But I'm getting used to these questions from Mom. So after only a slight hesitation I said,
"Sure, Mom. We have another daughter. Her name is Laura."
Mom looked puzzled for a moment. Then she said, "Oh, that's right. Of course."
I went on to brag about Laura and all her activities and accomplishments. But inside I couldn't help feeling shaken.
NO SUDOKU FOR MOM
Before Tim left he told me to try to get Mom to play Sudoku with me. He pointed out a Sudoku book. He said that he and
Mom had started the first puzzle. "It's good for her mind," Tim said. "See if you can get her to do it with you."
After Tim left, Dad also brought up the Sudoku book and encouraged me to try to get Mom to solve a Sudoku puzzle with
me.
All day yesterday I proposed Sudoku to Mom, but she wasn't the least bit interested. I became more forceful. Mom dug
in her heels and absolutely refused to participate. "Go away," she said. And she stuck her nose in a newspaper.
Last night I tried again. Bingo! Mom was having a glass of Kendall Jackson Chardonnary (her favorite) and she was in
a Sudoku-friendly mood. Ah-Hah, I thought. Now's my chance.
I sat down beside Mom and we began a fresh puzzle. It only had four blank cells in one column, so I figured this was
a good place to start. I told Mom how you have to have the numbers 1-9 in a column. Mom looked at the numbers and said, "Put
1, 2, and 3 here. And put a seven there."
I spent another 10 minutes with Mom trying to explain how you can't just put numbers into cells. I tried to explain how
you have to test the cells so the same numbers work in columns, rows and in the little three-by-three boxes.
No dice. Mom wasn't interested. She'd solved the puzzle as far as she was concerned. Now she was bored.
I put the Sudoku book away.
A TRUSTEE'S MEETING AT CHURCH
This morning Mom and I attended her church's trustees meeting. We drove to her church sanctuary on 25th street and Avalon
Avenue and went inside the sanctuary.
Mom was spectacular.
When it comes to social interactions, Mom is still a sharp cookie. She recognizes people's faces; she remembers people's
names. She grabbed my arm as we entered her church and introduced me to the ten other trustees, one right after the other.
She never missed a beat.
We sat in the front row, the rector Ken Albrecht handed out our meeting agenda, and the meeting began.
Mom participated actively in the hour and a half meeting in every respect but one: She ignored all the documents. We
had a lot of handouts to scrutinize: budget tables, memoranda, letters to and from other parishes, stock portfolio information,
building maintenance reports, etc. At first, Mom tried to find the appropriate document in the meeting folder when a person
began their report. But she quickly tired of this and just put the folder aside.
I was curious about the materials, and I didn't think it looked right for Mom not to refer to any of the documents, so
I asked her for the folder, and for the rest of the meeting I handed Mom each document as it became relevant. Mom would glance
at the document then put it aside. I have no idea if she read it or what she got out of it.
This lack of attention toward printed material reminded me of a comment Lisa had made to me on Thursday while I was driving
to Avalon. I had told Lisa how impressed I was that Mom reads the newspaper every day.
Lisa replied, "She reads the paper, Freddie. But do you think she remembers what she's read? I don't think so. And I've
seen her read the same articles over and over. The moment she puts the paper down she doesn't know what she's read."
The same type of experience happened this morning after we had returned from the trustees meeting. I had given Mom a
photo album last August after I had been with her and Dad for Mom's 81st Birthday celebration down here at the shore. When
Mom received the album in the mail she called me and told me how wonderful it was and how much she loved it. (I still have
her phone message on my answering machine.)
This morning Owsley found the photo album and showed it to Mom and Dad. Both of them acted as if they had never seen
the album. They looked at each of the photos and thoroughly enjoyed them. I watched them carefully. It was if they were looking
at the pictures for the first time.
JANET'S NEW JOB
On the flip side, I've been impressed with how much Mom seems to be involved in all the conversations since I've been
here. For example, Owsley, Dad, Tim and I were talking about Janet's possible new consulting job. None of us had talked to
Mom directly or asked her opinion for about fifteen minutes. She had been very quiet, and I realized suddenly that we hadn't
included her in the conversation.
I looked at her and asked, "What do you think Janet should do, Mom?"
Without any hesitation, Mom said: "Janet is a very smart girl. This sounds like a good opportunity for her. She has to
weigh the impact of the job on your family, and then she has to make her decision."
I was stunned. So were Dad, Tim and Owsley. We had assumed Mom had tuned out and gone into Alzheimer's la-la-land.
We were wrong. Mom can surprise you. She's still there.
Friday, May 26, 2006
What a Nice Surprise! I Didn't Know You Were Coming!
I drove down to the New Jersey seashore yesterday afternoon in a Duke-blue PT Cruiser rented from Alamo at the Philadelphia
Airport. Rain splattered on my windshield as I drove. When I arrived in Avalon in front of my parents' house, the wind was
blowing and the sky was overcast and dark.
Mom and Timmy were out on a walk. They spotted me in the PT Cruiser shortly after I arrived. Tim came over across the
street and banged on the car window. I finally found the button to let the window down, and I greeted him and Mom.
I got out of the car and gave Mom a big, warm hug. She became teary-eyed and said: "What a nice surprise! I didn't know
you were coming."
MOM'S NEW HERBAL MEDICINE -- GINGKOBA
I had come expecting the worst.
The reality was far better.
Mom and Dad seemed approximately how I had last seen them when they visited us in North Carolina in late January. Dad
moves very slowly and seems always in pain. Mom is alternately bright and alert or zoned-out and withdrawn. This is pretty
much the way they appeared to me four months ago.
Mom is now taking a pill three times a day called
Ginkoba. Gingkoba is a concentrated herbal extract from the leaf of the Gingko (or Gingko Biloba) tree, originally found in China
and now cultivated all over the world. I researched Mom's medicine and found it is created using the best-regulated Gingko
concentrate on the market.
There is still controversy over the effectiveness of ginko biloba in improving memory. However, the herb is licensed
as a medicine across Europe, and there have been many studies that show positive results. For example, according to a
web review from the Sage Mountain Botanical Sanctuary:
Popular dietary supplements made of standardized concentrated extract of ginkgo leaf show promise
in helping to improve memory associated with dementia in older patients, according to a major scientific review of 33 clinical
trials.
"I FEEL LIKE I'M NINETY YEARS OLD."
The biggest thing I have noticed so far is how frustrated Mom gets when she can't remember things. For example, she and
I went to pick up a girl friend of hers who walks the boardwalk with Mom. We went to the lady's house, but her husband told
us that the lady had already left for the boardwalk because she and Mom had agreed that was their meeting-place.
This news made Mom very frustrated. She has always been extremely punctual and responsible about appointments with other
people. It bothered her that she hadn't remembered the details of their plan together.
After we walked the boardwalk Mom and I returned home. Mom suddenly wanted to make herself a rum and coke even though
it was only 11:20 in the morning. She rushed through the house saying things like: "Where's the lime? I can't find the lime!"
and "We don't have any rum!" and "There's no ice in the ice maker. Why don't we have ice?"
My brother Owsley came to her rescue. He said he would buy Mom some lime at the grocery store. He told her that the ice
machine was broken but he would fix it for her. And he quickly found several bottles of rum right where they should be, in
the family liquor closet.
Mom followed Owsley around the house muttering to herself. As she walked by me I overheard her. She was shaking her head
and grimacing. She said, "I don't know what is wrong with me. I can't remember anything. I feel as if I'm ninety years old."
Thursday, May 25, 2006
I Am Going Home Today
Today's the day.
I get on a plane and head to Pennsylvania. Then I get in a rental car and drive to New Jersey to see Mom and Dad at the
shore.
I'm looking forward to this trip ... and dreading it.
I'm looking forward to this trip because I haven't seen Mom and Dad since January. I miss them, and I can't wait to see
them.
I'm dreading this trip because I'm afraid of what I'll see. I have sort of a rose-colored glasses image of both of my
parents. In my mind they look like they have for decades: older but still brimming with health, fitness (my mom), and mischief
and personality (my dad).
I'm not sure exactly what I'll actually see when I get to their home in Avalon, New Jersey.
I will write again in this blog later today after I get there. Or, at the latest, watch for this blog tomorrow morning.
Wednesday, May 24, 2006
Nine Steps to Protect You Against Alzheimer's
The current edition of the Harvard Men's Health Watch offers seniors and boomers some tips on how to delay the onset
of Alzheimer's Disease. The tips are useful for both men and women.
According to an
article in SeniorJournal.com entitled, "Nine Easy Steps to Fight Age-Related Memory Loss," here is the Harvard list:
1. Get mental
stimulation:
Brainy activities stimulate new connections between nerve cells and may
even help the brain generate new cells. Read, draw, take classes, and explore new hobbies.
2. Get physical exercise:
Exercise increases the number of blood vessels that bring blood to the region
of the brain responsible for thought. It also spurs the development of new nerve cells. In one study, for every mile a woman
walked each day, her risk of cognitive decline dropped by 13%.
3. Improve your diet:
A reduced-calorie diet has been
linked to a lower risk of mental decline. Also remember your Bs: folic acid and vitamins B6 and B12. These can help lower
homocysteine levels. High homocysteine has been linked to an increase risk of dementia.
4.
Improve your blood pressure:
High
blood pressure in midlife increases the risk of cognitive decline.
5. Improve your cholesterol:
High levels of LDL (“bad” cholesterol) increase the risk of dementia, as do low levels of HDL (“good”
cholesterol).
6. Avoid tobacco:
According to one study, smoking doubles the risk of dementia.
7. Don’t abuse alcohol:
Excessive drinking is a major risk factor
for dementia. If you choose to drink, limit yourself to two drinks per day.
8. Protect
your head:
Moderate
to severe head injuries early in life increase the risk of cognitive impairment.
9. Build social networks:
One study linked frequent social interactions with a 42% reduction
in dementia risk.
It is neat is that these same tips are useful in protecting
us against many other diseases, including strokes, heart attacks, cancer, and diabetes. At least if we have to be good, we
get multiple pay-offs for being good.
But these tips do make me wonder. If high blood pressure
were so important, why is my dad sharp as a tack at 88 with lifelong high blood pressure? If physical exercise is important,
how come my mom who was still playing tennis last year has Alzheimer's?
I guess that each of these tips gives
you some protection against Alzheimer's. And you need to do all of them to be really protected.
And even if you are totally good, and you do everything right, you are still a prisoner
of your genes (your hereditary background).
And then there's fate.
Tuesday, May 23, 2006
Smart House: Trading Privacy for Freedom
Dad has told his children that he will never let Mom go into a nursing home. Also he balks when it comes to
hiring a live-in caregiver who would look after him and Mom. My sister Lisa has lined up people to care for Mom and Dad in
their own home. But Dad refuses to hire any of them. For now Dad is hanging on to his independence.
(The old lion is master of his cave. Challengers and usurpers are barred at the door.)
THE CHILDREN'S WORRIES
My two brothers, Owsley and Tim, and my sister Lisa have all told me how worried they are about our parents. They live
in the same area as our parents. And they feel that at least once a day they have to visit Mom and Dad to make sure
they are all right.
Dad has high blood pressure and congenital heart failure and can barely move because of his arthritis. Mom can't hold
onto short-term memories. She easily becomes disoriented, confused, and angry when faced with something unexpected. More and
more, everything Mom faces is unexpected.
If Mom injured herself, Dad couldn't move quickly to bring her aid. If Dad injured himself, fell unconscious, or suffered
a sudden stroke, Mom might not remember to use the telephone. Normal things rattle Mom. A crisis might put her over the top.
A COMPROMISE
According to a recent
story aired on WFTV in Florida, researchers at Oregon Health & Science University in Portland, Oregon, are working on a
smart
home that might be acceptable to Dad.
The smart home is a combination of small, inexpensive sensors set up around a normal home to keep track of people's activities.
If Mom and Dad had these sensors, they would sacrifice a lot of the privacy that Dad holds so dear. On the other hand,
human and software monitors would be alerted the moment their movement and activity patterns changed in the house -- for example,
in the event of a sudden crisis.
My brothers and sister can't be at Mom and Dad's house all day long. They are extremely devoted, but they still have
to go to work and lead their own lives. On the other hand, these sensors would be awake and alert 24 hours a day, seven days
a week.
The smart house may not become commercially available soon enough to help my mom and dad. However, if you have friends
or relatives who value their independence but who need looking in on regularly, maybe this is just what they need.
Monday, May 22, 2006
Art and Alzheimer's
According to an
article in DailyPress.com, art gives Alzheimer's patients an outlet for self-expression. This past Sunday an auction and art exhibit
entitled, "Memories in the Making," was shown at the Williamsburg, Virginia, community building. The exhibit has been traveling
around Virginia to raise public awareness of Alzheimer's Disease.
Many people with Alzheimer's Disease who are having trouble speaking are still able to communicate their feelings through
art or music. Art and music can tug on strings in a person's memory and evoke deep memories untouched by the ravages of the
disease.
Making art is satisfying for people with Alzheimer's Disease. Painting in a group gives people with Alzheimer's opportunities
for creativity, group socialization, and expressing of stories and emotions. According to the article:
Sometimes patients who have been uncommunicative for extended periods find themselves able to talk
about their paintings. Often, these images originate with joyful memories.
Friday, May 19, 2006
They Are Going to the Shore!
I called Mom this morning after I finished writing today's blog (see below). I asked her if she remembered that I'm coming
up there to see them next Thursday.
"What day are you coming?" she asked.
"Thursday," I said. "I'm flying in."
"What time will you be arriving?" she asked.
"Early afternoon," I said. "Nancy and Timmy are picking me up at the airport."
"Well, that's no problem," Mom said. "We'll leave a key for you under the mat or over at Dad's office with Barbara."
"Why are you leaving me a key?" I asked.
"Because we are going down to the shore on Thursday," Mom said. "We may be gone when you get here."
"Why are you
going to the shore?" I asked. (It's not even Memorial Day. Usually my folks go to the shore in mid-June.)
"My church is opening up, and there's a ball being held over the weekend at the Avalon Yacht Club to celebrate the beginning
of the season," Mom said.
"All on Thursday?" I asked.
"No. Not until the weekend," said Mom. "But don't worry. You can stay at our house."
"Oh," I said, feeling deflated. "But I wanted to see you and Dad. Not the house."
"Well," said Mom. "Dad says we're leaving Thursday."
I said good-bye to Mom and hung up the phone. I couldn't
keep from thinking that I had just told Dad yesterday that I was coming up Thursday. He welcomed me and didn't mention any
plans about going down to the shore.
I guess if I'm going to see my folks I'll have to rent a car in Philadelphia and drive down to Avalon to see them.
Then I'll turn around Saturday morning and drive back to Pennsylvania to go to Courtney's Wedding. Then I'll turn around and
drive back to the shore to see them again. Then I'll turn around and drive back Monday to catch my plane back to North Carolina.
(groan)
Six Days and Counting ...
Next Thursday I fly to Pennsylvania to visit my Mom and Dad and to go to my cousin Courtney's wedding. My brother Tim
or my sister-in-law Nancy is going to pick me up at the Philadelphia Airport when I arrive.
I call Mom each day to remind her that I am coming. She either remembers that I am coming or she is pretty good at faking
it. She always seems happy to hear the news (again) and tells me she can't wait to see me.
Yesterday she passed the phone to Dad. I told him I was coming to Pennsylvania next Thursday and I was hoping to stay
with him and Mom. I asked him if Mom had told him.
"Nope," he said. "I didn't know you were coming."
"Is it okay?" I asked.
"Will you be staying a day or a day and a half?" Dad asked. (This is his way of reminding me that I don't visit them
often enough.)
"Maybe a day and a half. Maybe longer," I said, playing his game.
Dad laughed his knowing laugh. "Well," he said, "you are welcome to stay with us as long as you can."
"Thanks, Dad," I said.
Thursday, May 18, 2006
Your Tires Are Bald and You're Going to Sing Sing
Taking care of an Alzheimer's patient is never easy. This is especially true for my cousin Dot who has her own business
named "Let Dot Do It." Dot does just about everything. She takes people shopping. She watches people's cats and dogs while
they are away. She takes people to hospitals. She waters plants. You name it. Dot does it.
One of Dot's most challenging clients is a man named Skip. Skip suffers from
Early Onset Alzheimer's. Skip is a lovable guy. But his Alzheimer's also makes him unpredictable. Here is an excerpt from a recent conversation that
I had with my cousin Dot:
Fred: So how is Skip doing?
Dot: Don't ask. He's been a terror this past week.
Fred: Meaning?
Dot: Last week I took him for a check-up at a hospital. Almost as soon as I got there, I lost him.
Fred: Oh, Dot. How did you lose Skip?
Dot: He wandered off while I was checking him in. I was so worried. I searched frantically for him. When I finally found
him, he was fine. He had had his appointment and was ready to go.
Fred: What else has Skip been up to?
Dot: After we left the hospital he made me take him home. When he got there, he went inside. A minute later he brought out
his camera and began taking pictures of the tires on my car.
Fred: Why did he do that?
Dot: I had told him I had my car inspected. He said, "Your tires are bald. You shouldn't
pass inspection. It's not right."
Fred: Did you pass inspection?
Dot: Yep. But that really bothered Skip. He was taking pictures of my car so he
could report me to the Department of Motor Vehicles. I said, "Skip, if you do that, they'll send me to Sing Sing. Then I won't
be able to drive you around."
Fred: Did that stop him?
Dot: Not for a second. He shrugged his shoulders and
kept taking pictures. He said, "No one is indispensable."
Fred: Any more stories?
Dot: Then there's today. He cancelled his appointment with me today because he's buying
a new cell phone.
Fred: Why does Skip need a new cell phone?
Dot: Yesterday he was walking along his dock next to his house on the Sassafras River. He tripped on a board, flipped
over, and fell into the water with all his clothes.
Fred: The cell phone took a dip with him?
Dot: Yep.
Tuesday, May 16, 2006
A Cocktail of Drugs for Alzheimer's?
Doctors remain puzzled about the origins of Alzheimer's Disease. At one time their main suspect was the beta form of
the Amyloid protein that formed the telltale "senile plaques" in a person's brain. These plaques were thought to disrupt the
transmission of brain messages and to kill neurons.
Today, scientists are less sure that the plaques are the cause of Alzheimer's, and many suspect they are only the symptoms.
Some scientists speculate that small fragments of the plaques, known as oligomers and protofibrils, act
like "cruise missiles" that rain down on neurons and kill them and render them useless.
Other scientists think the cause of Alzheimer's is brain inflammation. Still others suspect that the mitochondria in
people's brain cells are the key to understanding Alzheimer's. Scientists are hunting for a cure in the way a brain metabolizes
sugar, and speculate that Alzheimer's might be a kind of diabetes of the brain. Still other scientists hunt for clues in the
brain's genes, in particular the gene known as ApoE4.
Over 90 major studies of Alzheimer's are being conducted world-wide. The Federal Government is spending over $650 on
research to cure the disease. Hundreds of laboratories are the studying the effects of experimental drugs on transgenic
(genetically modified) mice that are bred with Alzheimer's Disease built into their brains.
With no clear villain to pin Alzheimer's on, scientists are beginning to compare Alzheimer's to AIDS. Instead of curing
Alzheimer's with a single miracle drug, they think that the best strategy might be an Alzheimer's Cocktail. Scientists
are starting to lend their support to a "diversified portfolio" of drugs that could be safely administered to an Alzheimer's
patient. None of these drugs alone would make a difference, but all of them together might arrest the progress of the disease
or even reverse it.
Monday, May 15, 2006
Was There a Wedding, or Not?
I called Mom yesterday on Mother's Day. I asked her how her day was going. She said (as always), "Terrific!"
Brian Tercha, the son of my brother Owsley's business partner, John Tercha, had gotten married the day before, on Saturday.
I had heard that Mom and Dad were planning to attend Brian's wedding. I thought I'd ask Mom how she liked it.
"So," I said, "how was the wedding yesterday?"
"What wedding?" Mom asked.
I was floored. Mom's Alzheimer's has been relatively mild so far. She forgets tons of little things, but she remembers
the big ones. For example, Mom forgets what she has for breakfast. She forgets where food is stored in the cupboards.
She has even become disoriented on some of the streets in her hometown. But, to my knowledge, she has never forgotten something
as big as a wedding. Especially not the day after.
After a moment of stunned silence, I said, "You know, Mom. Brian Tercha's wedding. Owsley and Teri told me you and Dad
were going to the wedding. It was yesterday, I think."
Mom said, "I don't know anything about a wedding. But wait a moment ... "
Mom turned away from the phone and asked Dad, Owsley, and the others in the room, "Did I go to a wedding yesterday? Did
somebody get married?"
After someone answered her question, Mom came back on the phone. "Yes," she said. "There was a wedding yesterday."
"And did you go to it?" I asked.
"Yes I did," Mom said, not sounding at all convinced.
"Well, that's nice, Mom," I said. "I'm sure you had good time."
Then I quickly changed the subject to the weather.
The rest of the conversation went smoothly.
Friday, May 12, 2006
I'm Going to PA!
I finally made plane reservations last night to go to Pennsylvania.
My cousin Courtney Sypher is getting married on Saturday, May 27th, and I've been invited to the wedding.
I will arrive at the Philadelphia Airport at 1:20 PM on Thursday, May 25th. I leave Philadelphia and return to Raleigh
on Monday (Memorial Day) at 10:30 AM.
This way I get to go to Courtney's 5 PM wedding on Saturday. And I can spend the rest of the time -- almost 3-1/2 days
-- with Mom and Dad.
I am really looking forward to seeing both of my parents. I try to keep in touch by talking to Tim, Lisa, Owsley, Mom,
and occasionally Dad. But it's not the same as being there and seeing for myself.
Thursday, May 11, 2006
Happy Mother's Day, Mom! Now, Which House Are You At?
How do you give a person with Alzheimer's a Mother's Day gift?
The answer is: carefully.
Next Sunday, May 14th, is Mother's Day. I wanted to send Mom flowers for Mother's Day, but I worried that she and
Dad might not be in Media, Pennsylvania, over the weekend, but instead might be visiting their farm in Oxford, PA.
I've done this before. I've sent flowers to their home in Media, and the flowers sit there on Mom's doorstep withering
until she gets back from the farm.
So I have a brilliant idea: Why don't I call Mom first and ask her if it's safe to send the flowers to Media?
"Hi, Mom," I said, when I called her. "I'm planning to send you flowers for Mother's Day. Will you be in Media on Friday
when they will arrive?"
"I have no idea where I'll be," said Mom. "I never know where I'll be."
"Right," I said. Good thing I asked.
After talking with Mom for another minute I told her to expect to receive the flowers the next day. I got on the phone
a second time, ordered an arrangement from Media Florist, just a few blocks from their home, and breathed a sigh of relief.
Then I started worrying again. I figured I'd better keep calling until Mom and her flowers actually came together in
the same place at the same time.
The next day I called Mom and reminded her to watch out for her flowers. She assured me she would.
At mid-day I called her house. No answer. I called my dad's office across the street and spoke to his secretary Barbara.
Did she know anything about the flowers?
"I see them sitting on the front porch of your parent's apartment," she said. "They are very pretty."
I asked if Mom and Dad were still living in that house. Barbara said yes. I asked her if maybe she could go across the
street and put the flowers inside the house so they would be there when Mom got home.
Barbara agreed.
An hour later Mom called. She had been out with my sister-in-law Nancy, and when she got home, there were her flowers
waiting for her in the dining room. "They're beautiful!" she exclaimed. She sang me a pretty little song thanking
me for her flowers.
"But it's only Wednesday," I said. "I guess it's a little odd to get your Mother's Day flowers on Wednesday."
"I'll
take them any day I can get them," said Mom.
I told her this way she could enjoy her Mother's Day flowers all week long. And she could even take them with her to
the farm this weekend when they go out there to attend a wedding.
Happy Mother's Day Week, Mom!
Wednesday, May 10, 2006
The Woman in Red Shoes
Have you ever thought what it feels like to have Alzheimer's?
I found this short piece this morning in The Cambridge Times (Cambridge, Ontario, Canada):
The following scenerio reflects what a person with Alzheimer's disease can go through on any given
day.
He sat and stared at the house and tears began to stream down his face. He was lost and frightened.
He looked at his shoes and then at a flaw in the sidewalk and he wondered how the new cement could have already cracked when
the neighbourhood looked so young.
Suddenly, a pair of red shoes stepped into his view and he looked up to see the face of a beautiful
woman who smiled and nodded her head.
"Hi," the man said quietly. "Nice day."
His voice quivered and her smile began to fade.
"Did you check the mail honey?" she asked him.
She placed her hand on his shoulder and he flinched under the touch of her hand.
"Come on dear," she said. "I'll take you home."
He rose to his feet and she took hold of his elbow for guidance. He hesitated to go with a stranger.
Across the street they went through the white gate leading to a lovely house.
He was home and his wife knew she'd have to explain that to him - she did every day.
Tuesday, May 9, 2006
All My Friends Are Dead!
Now that Mom and Dad are back in Pennsylvania their loyal children who live there visit them frequently. Owsley stops
by and occasionally spends the night with them in their guest room. Tim drops by most mornings and takes Mom for a walk and
a cup of coffee. And Lisa comes by the house, picks up Mom, and takes her on errands.
The other day, Lisa and Mom were out shopping and having lunch together. Lisa was trying to console Mom because two of
her friends are sick and another two have recently passed.
"Mom," Lisa said, "it's sad that your friends are passing away. But, you know, they are never really dead as long as
you keep them in your memory. That way they are still alive."
"What are you talking about?" Mom asked, in disbelief. "Alive? They're not alive. All my friends are dead!"
Dad laughed when Mom said this. Lisa smiled and shook her head.
On the surface Mom's comment doesn't seem to make sense. But if you are a person with Alzheimer's, maybe it does make
sense. If you can't remember things then how can your friends live on in your memory? Even your living friends?
Mom and Dad go to their restaurant, D'Ignazio's Towne House, for dinner almost every night now that they are back in
Pennsylvania. Mom orders dinner from the menu. And when her meal comes she is usually startled. "I didn't order this!" she
exclaims.
Mom is surprised by her dinner because she isn't able to remember what she ordered. The simple act of keeping her dinner
order alive in her memory for perhaps fifteen or twenty minutes is sometimes impossible for Mom.
Memory is a little like juggling. It's like keeping memory "balls" in the air. Your world is richer if you can keep more
balls going at the same time: at the same time you can remember your spouse, your children, your family, your friends, your
workmates, books you are reading, important current events, dramatic basketball games, car races, movies, TV shows. Whatever
matters to you. These are the dramatic, exciting things that light up your life in the moment and elevate it from
the humdrum to the vivid, the delicious and spectacular. Keeping these memories aloft makes life meaningful.
But what if you can only keep five balls in the air at a time. (You can keep only memories alive.)
Or only four balls? Or three balls? Or two balls? Or one ball?
What if you don't have any balls in the air?
What
would your life be like then?
Maybe then you would feel like Libby D'Ignazio when she says: "All my friends are dead."
Monday, May 8, 2006
Is Mom Apathetic?
I talked with my sister Lisa about my Mom last week. Lisa said Mom didn't want to do anything now that she was back home
in Pennsylvania.
This reminded me of a phone conversation I had with my brother Owsley who was looking after my parents in Key Largo,
Florida. Owsley said he had tried everything with Mom, but she didn't want to do anything. He tried to sign her up for tennis
matches. He booked her at the gym. He set up all kinds of appointments for activities. But Mom just refused to go.
Owsley's nagging didn't help. Dad's nagging didn't help.
Owsley even placed "Libby's Activity" boards around their house.
Mom ignored them.
APATHY OR DEPRESSION?
After talking with Lisa and Owsley I wondered if Mom is depressed. But whenever I talk with her she always sounds bright
and happy.
Is she just apathetic?
I found an
article this morning on apathy and depression among Alzheimer's sufferers. Dr. Paul Malloy and Dr. Patricia Boyle in the Psychiatric
Times write:
Apathy is the most common neuropsychiatric symptom reported among individuals with Alzheimer's disease
(AD), affecting approximately 70% of patients in the mild-to-moderate stages (Landes et al., 2001) and increasing in severity
as the illness progresses (Mega et al., 1996).
Apathy is characterized by the loss of initiation and motivation to participate in activities,
social withdrawal, and emotional indifference (Marin, 1991).
As Alzheimer's progresses it affects the frontal lobes of the brain. It differs from depression in that the
person experiences indifference without feeling negative feelings of pain, sadness, self-loathing, anger, etc.
An apathetic person doesn't feel bad. They just don't care.
Mom is taking the best current medicine for Alzheimer's -- cholinesterase inhibitors (Namenda and Aricept). These
inhibitors also help with her apathy. Her medicine slows down the progress of the disease. But it cannot stop it.
Friday, May 5, 2006
Mom's Memory Is Shaky
I talked with my sister Lisa yesterday on the phone. She has spent a lot of time with Mom in the last couple of days
and has had a chance to observe her closely. Here is an excerpt from our conversation:
"Mom is not doing very well," said Lisa.
"How do you mean?" I asked.
She replied, "She doesn't want to do anything. You have to coax her to do everything. She is recognizing less and less."
"Like what?" I asked.
"For example," Lisa said, "when I drove her around Media, there were parts of town that she didn't recognize."
(Mom has lived in Media over 50 years.)
"What else?" I asked.
"Well," said Lisa, "I took her to her normal hair dresser, and she asked, 'Is there a hair dresser out here?'"
"That's pretty bad," I agreed.
"The worst thing," said Lisa, "is when we went to the Towne House."
"What happened?" I asked.
"Mom sat down," said Lisa. "Then John came over to the table to say hi to her." ["John" is John Carnie, Lisa's husband
of 34 years and manager of my family's restaurant.]
"And ... ?"
"And," said Lisa, "Mom didn't recognize him."
"Mom didn't recognize John?"
"Not until John introduced himself and reminded Mom who he was. Then she did her thing acting as if she had known him
all the time."
Thursday, May 4, 2006
I Will Call Lisa and Owsley Today
Just a quick note for today's blog.
I'm eager to hear my brothers' and sister's assessment of my parent's health, now that they have returned from their
three-month trip to Florida.
I called my sister Lisa and my brother Owsley yesterday. When I reached Lisa she was with my mom at lunch. She was unable
to talk freely, so Lisa and I agreed that we would talk today.
I also called Owsley. I didn't reach him, and he hasn't called back yet.
I will make sure I talk with Owsley and Lisa today, and I will report what I learn in tomorrow morning's blog.
Wednesday, May 3, 2006
A New Therapy for Mom?
I review from 3-10 new studies a day about Alzheimer's. I look for news that I can share with others about treatments
and caregiving strategies for Alzheimer's. I especially focus on issues related to my mom.
Today I came across a new drug treatment that is obscure but which shows a potential to immediately benefit my mom. The
online edition of
Doctor's Guide recently reported on a study done right here in Raleigh, NC, by Dr. Brian Reynolds and his research team, and funded
by Voyager Pharmaceuticals.
The study was prompted by news that a doctor was having significant success treating a patient for Alzheimer's using
an orthodox combination of drugs.
The doctor who was treating a patient for Alzheimer's Disease discovered that the patient also had prostate cancer. The
doctor continued giving the patient his medication for Alzheimer's, but he also began a regimen of medication to treat the
prostate cancer. (He prescribed Voyager Pharmaceutical's leuprolide acetate for the cancer.)
Over time, the patient began making significant improvements in his cognitive abilities. He was doing better fighting
the Alzheimer's on the combined medication than he had been doing on the Alzheimer's drugs alone.
Other research studies corroborate the physician's findings with his patient. Recent studies show that Voyager's prostate
cancer medicine -- leuprolide acetate -- reduces the protein plaques and the protein tangles associated with Alzheimer's Disease
in laboratory mice.
Voyager Pharmaceuticals heard about all these studies and funded a new study led by Dr. Reynolds. Dr. Reynolds studied
108 women over the age of 65 for a 48-week period. There seemed to be no cognitive improvement in women who received only
the leuproside acetate. But there was significant improvement in women who received both medications -- Alzheimer's medicine
and the leuproside (anti-cancer) drug.
Based on these positive findings, Voyager is funding new studies on men to see if the same results can be achieved.
This is an important study for Mom because leuproside acetate has been used safely for a number of years. If the drug
is shown to be an effective treatment for Alzheimer's, then I need to bring it to the attention of my family and Mom's doctors.
Mom might be able to go on the drug right away.
Tuesday, May 2, 2006
Babe Is Still Sharp!
I called my brother Tim yesterday. He was at his job working at the Towne House Restaurant after spending three long
days driving my parents from Florida to Pennsylvania. I asked him his assessment of my parents' health after spending
so much time with them in the car on the trip north.
"Pop is still sharp," Tim said. "I spent a lot of time with him in the car. I got to listen to him all the way. He isn't
losing it."
"How about Mom?" I asked.
"That's another story," Tim said. "It's sad."
"Do you think they'll be okay by themselves at their little apartment in Media?" I asked.
"They need someone to come in there every day," said Tim.
I'm going to call my sister Lisa and my brother Owsley today to ask their assessment of Mom and Dad.
ALZHEIMER'S MAY RIDE ON THE BACK OF DIABETES
There are 18 million people with Type 2 diabetes in the U.S. There are another 4.5 million people with Alzheimer's. As
I've written about in this blog, scientists now think there is a link between the two diseases. They worry that as the diabetes
epidemic increases, it will accelerate the number of cases of Alzheimer's.
Type 2 diabetes is triggered when the body's cells can't use insulin to process sugar properly. Scientists think that
Alzheimer's may begin when the cells in the brain -- the neurons -- can't process enough sugar. PET scans have shown
that people whose brains under-utilize brain sugar are more likely to develop Alzheimer's.
Scientists are testing mice and doing preliminary experiments with human volunteers to gauge the effects of insulin-sensitizing
drugs (such as GlaxoSmithKline's Avandia) on the brain's ability to process sugar and to ward off Alzheimer's. According to
one study cited in the
Seattle Post-Intelligencer:
Researchers who tracked 140,000 diabetic veterans found those who received insulin-resensitizing
drugs were less likely to be diagnosed with Alzheimer's years later.
Monday, May 1, 2006
Libby Is Back in Pennsylvania
They made it!
Yesterday the "Libby D'Ignazio" caravan made it back to Media, PA, safe and sound. Everyone arrived in the middle of
a mild, cloudy Sunday afternoon. My brother Owsley, his dog Andy, the family's speed boat, my brother Tim, and my mom and
dad all arrived stiff, sore, and a bit dyspeptic. But they made it. They're home!
According to Owsley and Tim, the marathon drive from Key Largo, Florida, to Media, Pennsylvania, went relatively smoothly.
No major mishaps were reported.
Now that my family is all in one place -- southeastern Pennsylvania -- I will look at how things have changed for the
whole crew while my mom and dad have been in Florida.
Stay tuned.
FAMILY AND FRIENDS ARE AS GOOD AS MEDICINE
A new study appearing in
The Lance Neurology this month shows that a person's social network acts like a powerful medicine to slow down the effects of Alzheimer's
Disease.
Eighty-nine elderly persons who showed no dementia were tracked extensively by the study. After they died, their brains
were examined for the telltale tangles and clumps of protein that are evidence of Alzheimer's Disease. According to
Forbes.com:
The larger a person's social network, the less effect the tangles and plaques had on their cognitive
test scores. This protective effect was noted across different kinds of cognitive abilities but was most evident for semantic
memory, which contains knowledge about the world and is involved in language and other uniquely human cognitive processes.
Dr. David A. Bennett of the Rush University Medical Center's Alzheimer's Disease Center in Chicago was head of
the study. Bennett was impressed by the results. He said that networks of family and friends help the brain tap new "protective
reserves" that counteract the areas damaged by Alzheimer's.
According to Bennett:
Previous studies suggest one factor is education. Now we know that healthy and frequent interactions
with friends and family have a positive impact as well.
