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Fred and His Mom in 1950
Fred and His Mom in 1950

"I Am What I Remember."

Welcome to my weblog. My mother Libby D'Ignazio has Alzheimer's Disease. I love my mom as much as I love any person in the world. I know she loves me. Having her slowly drift away from me and not know me is something I can't bear.
 
I will use this weblog (or "blog") as a public diary. I will tell you what I learn, experience and feel as I go through my days as the son of a person with Alzheimer's. I hope that this journal will help others as they follow the same path I am following.
                        -- Fred D'Ignazio (Fall 2005)

 

Please send me your comments by using the form on the "Contact Us" page. Let me know if you want me to post your comment in the blog. Also, tell me if you want your email address listed.

This blog appears each day with the newest article on the top and the oldest article stored in the blog's monthly archives. In effect, it reads backwards!

To read the blogs in chronological order or to find a particular blog, click on Blog Articles.

For a quick introduction to the blog, take a look at:

"The Long and Winding Road" is the first article in the blog. It appeared on Monday, October 24, 2005.

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Monday, July 31, 2006

Comments and Insights from Teri
 
My sister-in-law Teri is an avid reader of this blog. Teri spent several days recently with my parents at their seashore home in Avalon, New Jersey.
 
Here are excerpts from Teri's email that she sent me three days ago:
 
I loved the story about the dulcimer, so interesting. And the Switzerland article was good, too.

I am home from the shore - everything worked out fine while I was there. I went to the boardwalk everyday - Mom walked everyday but one - it was too humid. I guess I never did the "walk" before ... I found the pattern interesting ... Walk very moderate. We strolled down to the arcade - where she says she needs to sit down and rest, then go on to the Fishing Pier - where they greet her with a cup of coffee (very sweet people)....then walk back. We always took a little rest somewhere along the way.

I couldn't tell if Mom "needed" to rest or it was just the routine.

I did a bunch of clean up work around the house. I made dinner  2 x -- remember the chicken soup?  I'd say it was mostly pleasant and Pop was in good spirits. 

I did grocery shopping and just stayed on top of  "pick up". I know Mom was saying she didn't bring enough clothes from Media. She may be right. However, when I go back down, I need to help Mom go through her closets and assess what she could use and what she should throw out.  
 
Tim and his family arrive this weekend.

I sewed new covers for 7 chair cushions - looks a lot better. Plus got a new bed spread for Margaret's room.

Mom mostly "zones out" in evening and definitely shuts the house down and throws on lights as day dwindles.  Thank goodness the little air conditioner functioned, sort of.

Pop watches TV. Mom does like him in her sight.  It was a mostly uneventful mini week.
 
The tide in the bay was running low during day. Pop's doctor said don't go in the water till his legs cleared up from their skin condition. I think the legs were looking better - maybe he'll get in this week.

I'll go back down again to bring Curry up for birthday party Wednesday. It will be a down / up / down / up routine. Then O & she are up August 5 - we don't go back till August 18th.

later, T
9:28 pm edt

Friday, July 28, 2006

Alzheimer's Drugs Offer Only Modest Relief
 
Mom has been on the Alzheimer's drugs Aricept and Namenda for more than a year. During this time we have seen a gradual decline in Mom's memory and ability to get through her day unassisted. We have all felt that she would have gotten worse sooner if she wasn't taking the drugs.
 
Now at this year's international conference in Madrid on Alzheimer's scientists are saying that the drugs being prescribed for Alzheimer's patients are only moderately effective, at best.
 
(You can read more about this conference in the article, "Alzheimer's Drugs Fail to Deliver," that appeared yesterday in the Orange County Register.)
 
The federal government has approved only five Alzheimer's drugs. Four of them, like Aricept, are cholinesterase inhibitors. Their purpose is to inhibit the develop of the protein plaques that form in the brain and kill the brain's neurons. But a new study shows that patients taking Aricept experience only a 2.5 point improvement in cognitive function and daily living skills on a 70-point scale. This effect is not much better than taking a sugar pill (a "placebo").
 
One scientist at the conference said that it is "embarrassing" that Alzheimer's patients are spending $150-$200 a month on their Alzheimer's medicines, and they offer little or no improvement in the patients' conditions. Another scientist criticized the drug companies for playing on patients' and families' fear in marketing drugs that had such a modest effect.
 
Many participants at the conference, including members of the U.S. Alzheimer's Association, felt that the $2.16 billion dollars being spent on today's Alzheimer's drugs is far too much, given the value received. They were hopeful about a new generation of drugs that are currently being developed that would be significantly more effective. Sadly these new drugs are a long way away from being offered at a local pharmacy. They require years of clinical trials and then must receive approval from the Federal Drug Administration before they can go on the market.
 
Overall, researchers agreed that for today's Alzheimer's patients the best strategy is to take the drugs their physician prescribes and to follow supplementary strategies to support the drugs. These strategies include: an active physical life, active socialization with family and friends, board games, card games, puzzles, etc. The hope is that keeping active stimulates brain cells to work around the cells that are being killed by the disease. The brain can fight back. And until a new generation of Alzheimer's medicines are available, it must do it through non-chemical means.
 
12:21 pm edt

Thursday, July 27, 2006

Music for the Alzheimer's Soul
 

I am down at the beach at Emerald Isle, North Carolina, with my friend Anne Harrison and her family. Yesterday morning Anne and I were chatting on the front deck of her house when suddenly Anne said, “Shush!”

 

“What?” I asked. “Why are you shushing me?”

 

“Shh,” Anne said, putting her index finger to her mouth. “Listen. Do you hear it?”

”Hear what?” I asked, straining my ears. “I hear frogs, crickets, a buzz saw, the wind, and the waves crashing on the beach. Is that what you mean?”

 

“It’s a hammered dulcimer,” Anne said. “Shh …”

 

“A hammer what?” I asked. I looked at the house under construction, across the street. Maybe the ‘hammer doolzi-mirror’ was a special kind of hammer, and they were hammering something inside the house.

 

I’M JUST LEARNING HOW TO PLAY THIS

 

Anne explained that one of her favorite musical instruments was the hammered dulcimer, a medieval stringed instrument that you play with two delicate mallets.

 

Somewhere nearby a person was playing a hammered dulcimer.

 

A moment later we noticed an elderly gentleman seated on the upper front deck of another house across the street. He had a music case open and was intently looking down at something in front of him. Soft, beautiful notes glided across the street and floated up to our ears.Anne and Ed at the dulcimer

 

Anne, her two sons, Logan and Daniel, and I formed a caravan and marched across the street. I called up to the gentleman, and he invited us up to his balcony.

 

“I’m Ed Durden from Chattanooga, Tennessee,” he said when we arrived, "and I’m just learning to play this.”

We were on the upper balcony, where we met Ed and his beautiful hammered dulcimer. Ed was as modest as can be. But he played us a couple of songs on his dulcimer and told us some of the basics about the instrument. After a few minutes he turned over the dulcimer to Anne and had her playing “Old Susannah.”

 

THE DEMENTIA WARD AS OFF-BROADWAY

 

“I was shy about playing this when I first began,” said Ed. “But I got my butterflies under control by playing to folks in the dementia ward at a nearby nursing home.”

 

“That’s a great idea,” said Anne.

 

“It worked fine,” said Ed. “No matter how badly I played, everyone loved it. It was a great confidence booster. I got my nerve up and began playing to people in the non-dementia wards.”

 

I asked Ed for permission to tell his story in this blog. “Of course,” he said. “And you can tell them this, too. See my license plate down there in the driveway. Do you see the picture of the dog on the plate? That dog is a corgi, a Welsh corgi. When I first began playing in the nursing home, I took my corgi in with me to give me courage. When I took him to the non-dementia wards he always barked and barked. But do you know what he did when I took him into the dementia ward?”

 

“No idea,” I said. “I hope he didn’t bite anyone?”

 

“Never. He was perfectly friendly. He never barked. He was docile as can be.”

 

“He knew,” Anne said. “He sensed something.”

“That’s right,” said Ed. “He was a sweet little dog. And everyone loved him.”

 

7:51 am edt

Wednesday, July 26, 2006

I'm So Happy to Be Here!
 
I called Mom this morning at the shore. She was bright and happy.
 
I asked her if she had walked the boardwalk this morning. She said that she hadn't because it was too hot. She had slept in instead.
 
"Are you enjoying the shore?" I asked.

"I'm so happy here!" Mom replied. "I got up late. Now your father and I are having breakfast out here on the back deck. We're watching the boats go up and down the bay. It's very peaceful and relaxing."
 
"Are you ever going back up to Pennsylvania?" I asked.

"I don't want to," Mom said. "I guess I'll have to go back eventually. I only packed enough clothes for a couple of days. Even if I wash some clothes, I'll need a new outfit soon."
 
"And until then?" I asked.

"Until then I'm staying," she said.
 
 
11:48 am edt

Tuesday, July 25, 2006

They Made It to the Shore!
 
I called my parents this morning at their home in Avalon, New Jersey.
 
Dad answered!
 
Hooray! Mom and Dad made it to the shore!
 
Actually I had already talked with my mother three times -- on Friday, Saturday and Sunday. So I knew they were there.
 
The first time I spoke with Mom, she was funny. When I got her on the phone, I asked, "Mom, are you at the shore?"
 
"Of course I'm at the shore," she said indignantly. "Didn't you dial the shore?"
 
I like it when Mom is so sharp, even at my expense.
 
I asked Dad where Mom was, and he said she was walking the boardwalk with Owsley's wife Teri. (Teri and Curry are down at the seashore for the entire summer, since Curry has a couple of jobs in Avalon.)
 
I'M 88 YEARS OLD. HOW DO YOU THINK I FEEL?
 
"How is Mom doing?" I asked.

"Up and down, in and out," Dad said.
 
"How about you?" I asked. "Are you enjoying the shore?"
 
"Not really," he said.
 
That stopped me in my tracks.
 
"What's wrong?" I asked. "Do you feel okay?"
 
"I'm 88 years old," Dad replied. "How do you think I feel?"
 
"You're not enjoying yourself, I guess."
 
"I can't walk. I can't run. I can't bike. I can't go up and down steps. I can't do anything. How can I enjoy myself if I can't do anything?"
 
Dad and I said that we loved each other. Then we said good-bye. I couldn't help sympathizing with him. If I get don't get enough sleep, or I'm sick, or I've trained too hard, and I wake up stiff and sore, I get a glimpse of what my life will be like at 70, 80 or 90. It stinks! Especially if I felt that way all the time. Especially if I had to sit there miserable and in pain and watch the rest of the world running around me, going about their business, and having fun.
 
Dad has always been an active man. Now he can barely move.
 
No wonder he seems cranky all the time.
 
10:22 am edt

Friday, July 21, 2006

Is Today the Day?
 
I'll be calling my parents in a couple hours. I can't wait to see where they are. Will they be at the shore, in New Jersey? Or will they still be in their apartment in Media, PA?
 
Or will they be at their farm in Oxford?
 
Stay tuned.
 
 
6:34 am edt

Thursday, July 20, 2006

We Can Go to the Shore if You Don't Take a Drink
 
Dad and Mom are at cross purposes.
 
Dad doesn't want to go to the shore.
 
Mom does.
 
Dad doesn't want Mom to drink.
 
Mom wants to drink.
 
Mom badgers Dad to go to the shore. Dad badgers Mom to stop drinking. So far, neither one is moving. They don't go to the shore. And Mom keeps right on drinking.
 
Dad got creative recently and made a deal with Mom. If she stopped drinking for a week, Dad would take her to the shore.
 
At first, Mom liked this idea. But this was before her "rum & coke" hour at mid-day, or her cocktail hour in the evening. These were too tempting, and Mom didn't last a day, much less a week.
 
That's the status quo with my parents. Dad won't budge. Mom won't budge. Both my parents are as stubborn as donkeys. We'll see who cracks first.
 
 
11:42 pm edt

Wednesday, July 19, 2006

Shore or No Shore? That Is the Question.
 
Every summer, ever since I can remember, my parents have gone to the little town of Avalon on the New Jersey seashore.
 
This year is different.
 
My parents have visited their lovely home in Avalon a couple of times, but they have not stayed for more than a couple of days.
 
Yesterday I called home and Mom told me, "We're going down to the shore today."
 
I said, "That's great, Mom!"
 
However, as soon as I said that, Mom cupped the phone and I could hear her asking Dad: "We are going to the shore today. Right, Babe?"
 
I heard some muffled talking in the background.
 
Mom came back on the phone. She was irate. "Now we're not going to the shore. Maybe we are. I don't know what we're going to do."
 
I told her I'd check again today, and I'd find her no matter where she was. I told her I loved her. She said she loved me. And we hung up.
 
Why don't my parents want to return to the shore? Or, more accurately, why doesn't my father want to return to the shore?
 
My brothers, my sister and I think it's because Dad finds that climbing the steep stairs into the house has become too difficult. Also, our parents' bedroom is on the second floor of the old house, up another flight of very steep stairs.
 
My sister has offered to put a "stairway elevator" into the house in the front and another elevator at the back of the house that overlooks the "bay" (inland waterway). My brothers have suggested turning the front room downstairs into another bedroom for Dad's sake.
 
But, so far, Dad hasn't responded.
 
We have no idea what Dad wants to do next. Will it be shore or no shore?
 
Like Mom, we'll just wait and see.
 
6:42 am edt

Tuesday, July 18, 2006

Two Faces of Alzheimer's Disease
 
Alzheimer's Disease presents a different face each time I call my mom in Pennsylvania. I'm never sure "which Mom" I'm going to get: a coherent, conversational Libby or one who seems fussy and mildly spaced out.
 
Our phone calls are always brief. We talk about what Mom is doing that day. She asks me what kind of weather I am having. She thanks me for staying in touch. We say we love each other. And then we say good-bye.
 
WHO WON AT WILMINGTON?
 
Last week I called home just after the Wimbledon tennis match in Great Britain. Mom is an avid fan of tennis, and she watches all the matches on television. Mom knows all the old players and she is passionate about each one of them.
 
I thought it would be a safe bet to ask Mom about Wimbledon. However, I messed up because I called just after the last match was over. Wimbledon went from being a "current event" (one that Mom is clear about) to a "past event" (one that Mom is fuzzy or clueless about). This transition from current to past can occur overnight.
 
"So, Mom," I asked. "Who won at Wimbledon? Did Roger Federer win this year?"
 
"I don't know," said Mom.
 
(This is the point when I realized I'd made a mistake. I was asking Mom to remember something. "Uh-oh," I thought.)
 
"That okay, Mom," I said.
 
"No. No. I'll find out," Mom said, growing agitated.
 
I heard her turn away from the phone to speak with Dad. "Babe! Babe!" she shouted. "Who won at Wilmington? Was it Federer?"
 
I heard my dad say, "Wilmington? I don't know anything about Wilmington. Wilmington, Delaware?"
 
"Yes!" my Mom said. "Who won at Wilmington?"
 
"I don't know," my dad said.
 
"We don't know," Mom said to me, into the phone.
 
"Mom," I said. "Ask him who won at Wimbledon -- in England!"
 
"Babe! Babe!" Mom shouted. "Who won at Wimbledon?"
 
"Federer," said dad.
 
"Federer," Mom said, into the phone.
 
"Thanks, Mom," I said.
 
I'M WATCHING THE SPACE SHUTTLE LANDING
 
Some days when I call, I encounter the "Wilmington Mom." Other days, I meet up with a completely different Mom. This other Mom is hip, clear-headed and on top of the latest news about friends, family and world events.
 
I encountered this other Mom earlier this week when I made my morning call. Mom and I talked briefly but I could tell she was impatient to get off the phone. "What's up, Mom?" I asked.
 
"The Space Shuttle is landing," Mom said excitedly. "It's overcast at Kennedy Space Center in Florida, and they're worried that it will be a difficult landing."
 
I was pleased to see how excited Mom was about the Space Shuttle. "Is it coming down soon, Mom?" I asked.
 
"Yes," Mom said. "Right away. It's been a great mission. The first successful mission since the Columbia was lost in 2003. They've been working on the Space Station so they can set it up to help the moon launch in 2010. I'd better go."
 
"Right, Mom," I said, impressed. "I'll call you back later. Let's both say a prayer for the astronauts."
 
"Will do," said Mom. "Love you."
 
And she hung up.
 
Who had I just talked with? It clearly wasn't the feeble 82-year-old lady suffering from Alzheimer's Disease. Mom sounded more like an air traffic controller for the Space Shuttle or a TV commentator based in Cape Canaveral, Florida. Her words were clear and crisp. Her mind was firing on all cylinders.
 
I smiled. "She's having a good day," I thought.
 
2:43 pm edt

Monday, July 17, 2006

Driving Miss Libby
 
My dad has taken to driving my mom around in their car. It is a gallant, romantic and particularly apt invention. It fits their complementary strengths and weaknesses. Even more important it satisfies some important needs.
 
Let me explain:
 
Dad is becoming weaker physically. He may take an hour or more just to get up in the morning. Walking up and down a couple of stairs is a huge challenge. He doesn't answer the phone any more--partly because he's a contrary cuss and partly because he can't get to the phone in time when it rings.
 
Mom, on the other hand, is physically in good shape. In a month she will be 82. But she is robust, she is a strong walker and able to do most physical tasks around the house. Unfortunately, she has Alzheimer's. This leaves her in a passive, idling state mentally unless someone stirs her up.
 
That's where Babe (my dad) fits in. Dad's idea to go on drives in the car suits both of them.
 
Dad may take a long time to get into the car, but once he's in the driver's seat, he's ready to go. His mind is sharp. His senses all work. His reflexes are quick.
 
Mom is happy to go anywhere with Dad. When he slowly walks across their little street from their apartment to his office, Mom follows along. If permitted, she sits in his office while he does his work.
 
Find Dad and you can be sure Mom is nearby.
 
THE PERFECT TOUR GUIDE
 
Dad is the perfect tour guide for Mom. Dad has an amazing memory about the area where he has spent his entire life. He can drive up any street and recall events, people, and buildings that he saw there 20, 40, or 60 years ago. He always has a little story to tell about each memory.
 
Mom is the perfect listener. In fact, that's about all she does. And who better to listen to than the love of her life?
 
I can just picture Dad driving Miss Libby up and down the highways and byways of southeastern Pennsylvania, weaving together stories about people and places that he effortlessly summons from his marvelous memory.
 
Mom is riding alongside him, just as she has done for 60 years. And she is all ears.
 
ESCAPE FROM BOREDOM
 
Of course it's not always that idyllic. Dad may be 88 years old, but he is still a mischievous imp. He loves to stir everyone up. He knows everyone's "hot spots," and he's had over half a century to discover Mom's. If he pushes the right button, he can transform Mom from a glazed-eyed daze into a pot-and-pan-throwing hissyfit in less than 30 seconds. He's a master "spoon" who delights in stirring up the pot.
 
I can imagine that many of their drives around the Delaware Valley are probably anything but tranquil. Instead they are probably filled with threats, teasing, yelling, and fuming silence.
 
But this is not so bad. Anything to escape the stifling claustrophobia of their tiny apartment. What a great freedom for two persons whose bodies and minds are hobbled but whose spirits are intact? Dad may be almost 90 years old, but he can put the pedal to the metal and zip around city and town, calling up echoes of the passionate, active man he has always been.
 
And what great entertainment--and therapy--for Mom. The worst thing for Mom is to sit like a stone in her tiny apartment. She needs stimulation, conversation, triggers and hooks to keep her anchored in her brain, in her identity as Libby D'Ignazio, in her past and her present.
 
This is what Babe offers as he drives Miss Libby up and down the country roads, the tree-lined streets and narrow alleys in the patchwork of little towns and farms nestled between the western shore of the Delaware River and the eastern shore of the Susquehanna.
 
TOGETHER FOREVER
 
And what a perfect metaphor. My parents have always been fiercely independent souls. They have always been the center of a vast circle of friends, business acquaintances, admirers and hangers-on. Now as those folks gradually die or fade away, all that's left is Libby and Babe. Libby and Babe, Mom and Dad, driving alone together in their little car. They're still alive, still together.
 
No one knows where they're going. But that doesn't matter. Dad is in the driver's seat. Mom is at his side. They're still so much in love.
 
Off they go again.
 
 
8:23 am edt

Friday, July 7, 2006

In the Blink of an Eye
 
Yesterday we woke up at Aunt Martie's house. We called Mom and Dad and found out we were already in trouble. We planned to have breakfast with them before driving back to North Carolina. But we somehow weren't clear about what time breakfast would be.
 
We drove our car from Aunt Martie's to Mom and Dad's apartment in Media. Dad was standing out in front waiting for us. Mom was already in their car.
 
"I've got a place picked out for breakfast," he announced. "I'll drive my car. Eric will ride with Libby and me. You and Janet follow us in your car."
 
Dad climbed into his car, and he took off up the road ahead of us. "Oh no!" I said to Janet. "By being late we've put Dad into the driver's seat. Heaven help us!"
 
We were kidnapped. Babe was in control. Our fate was in his hands.
 
We knew we were in trouble when we started going down back roads, across obscure creeks, and up dirt roads. What was Dad up to?
 
His intentions became clear when he pulled up in front of 66 Letitia Lane, the first house I ever lived in. We wound around our old neighborhood at 10-15 miles per hour. Then Dad scooted off up the road. Janet and I gave chase.
 
The next stop on Dad's little tour was the house I grew up in: 401 Glenwood Avenue. Again, Dad slowed down. I saw Eric's head nodding in the car up ahead of us as Dad gave Eric the full history of the D'Ignazio family in the 1950s and 1960s.
 
"Oh, well," I told Janet. "Eric wanted to visit with his grandparents. This way he's having his visit on the move."
 
Again Dad took off. We followed him in our car. We went across creeks and rivers, up and down hills. Soon we were in a part of Folsom, PA, that I had never been to. Now where were we headed?
 
Java Joe's. It looked like a hole in the wall. Did they even serve meals?
 
We went in through the front door and the place looked just fine. It had a big dining room and featured enormous menus with every kind of dish imaginable. My brother Tim had introduced my parents to this restaurant recently, and soon we were ordering omelettes, Belgian waffles, orange juice, strawberries, peaches, and lots of coffee, tea, and whipped cream (for me!).
 
We had a terrific brunch at Java Joe's. We piled back into our cars and Dad led us back to his and Mom's apartment in Media. We visited with Dad briefly in his office and we all said good-bye.
 
After seeing my parents we visited with Janet's mom at her place in Lima Estates. Doris wanted to get on Google Earth. Eric and I were delighted. Here was Eric's 85-year-old grandmother--a computer whizkid. Instead of being frightened by computers, she wanted to learn the hottest new software. She wanted to use Google Earth and "pilot" her computer around the globe.
 
Eric and I installed Google Earth on Doris's computer, and he gave her a "piloting lesson" as they navigated around the planet via the joystick controls on the computer screen. On the way they visited Eric's apartment in Tokyo, Janet's and my home in North Carolina, the Grand Canyon, the Hoover Dam, New York City, and Janet's childhood home in Royal Oak, Michigan.
 
Just a Blink to the Babe
 
We said good-bye to Doris, and we began our 9-hour drive back to North Carolina. After our visits to childhood homes, Java Joe's and Google Earth, we didn't get on the road until 2:30 PM.
 
As we drove back to North Carolina, I asked Janet about her conversation with Dad at the Towne House on Wednesday, when we sat down for a late-day lunch after driving up from the New Jersey seashore.
 
"It was a great conversation," Janet said. "All except for one thing."

"What's that?" I asked.
 
"Your dad said that we don't stay long enough. We zip in and zip out."

"Oh, I know," I said. "That's his big gripe."
 
"I know where he's coming from, I think," said Eric.
 
"You understand your 88-year-old granfather?" I asked, amazed. "He's been a mystery to me my whole life."
 
"You've got to remember that when you are his age, time goes faster. A week to us is just a day to him. A day is just a moment. Even if we came up to visit him for a week, it would still seem like a very short time."
 
"Then you don't think he is just pushing our buttons, trying to make us feel guilty?" I asked.

"No, I don't," said Eric. "He really sees things this way. Life is just too short. It has all gone by in a whirl. Everything is speeded up to him. To Pop Pop, he really means it when he says, 'Stop, pull up a chair. Sit down with me and visit for awhile.' He probably would begin to feel comfortable with us if we stayed a month. Otherwise it's like we're always rushing in and rushing out. It makes him sad because we're gone before he knows it."
 
"Like in the blink of an eye?" I asked.
 
"Like in the blink of an eye."
 
10:31 am edt

Wednesday, July 5, 2006

Recharging Mom's Batteries
 
Happy Fourth of July!
 
Our family spent the Fourth at my parents' house by the bay in Avalon, New Jersey. We ran, we biked, we swam, we launched boogey boards into the ocean, we did Yoga. During the afternoon we watched a homegrown Fourth of July Boat Parade snaking down the narrow channel behind my parents' house. In the evening we watched distant fireworks in Stone Harbor, and were treated to God's own fireworks, as frightening webs of lightning arced across the nighttime sky. Teri D'Ignazio made us frozen margaritas and homemade chicken soup, and we watched our favorite soccer team, Italy, defeat the Germans in the World Cup semi-finals.
 
Everybody Pay Attention to Libby
 
This morning we packed up our cars, and Catie, Dave, Eric, Janet and I drove up from the seashore to Media, PA, for a noontime luncheon with my parents at the Towne House Restaurant. We planned to have a quiet little family lunch with just Libby and Babe, but the group grew and grew until our table took up half of the Towne House's front dining room.
 
With this big a group I immediately began worrying about Mom.
 
Dad's chief complaint in a social situation is that everyone ignores Mom. Now that she has Alzheimer's she doesn't naturally participate in conversations. If you don't address her directly, she slides quietly out of the conversation. Before long, it's as if she isn't even there. The conversation swirls mindlessly around her, and she sits in the middle, silent and ignored, with a dazed look in her eyes. 
 
But not today!
 
Today we all gathered around Libby like moths to a flame. Catie and Dave talked with her. Eric talked with her. Janet talked with her. I hugged her, kissed her, and fussed over her. She was the center of attention.
 
I watched her carefully. While people engaged her, she was vivacious, alert, spirited. She laughed and made witty, humorous retorts to everyone's remarks. Then when there was a lull, she fell silent. It was like watching the fuel dial on a car dashboard. The dial started dipping toward empty. Her face got this granitelike appearance. Her eyes got that odd look. Her mind was somewhere else--or not there at all.
 
Then another person spoke to her, and she perked right up. Immediately she was Mom again, all personality and light. Her eyes sparkled, and off she went, talking, laughing, being her dear, sweet self.
 
Mom is like the energizer bunny--with a short life span. When she's charged up, she is fearsome. But she doesn't stay charged very long. It's as if the Alzheimer's saps away her inner personality. Without memory, without an agenda, she remains essentially passive. She doesn't initiate, she responds. Hanging with Mom makes me realize how important social interaction is for people with Alzheimer's. Mom has the capacity to be social. But she needs someone to press her "ON" switch. Her "on" switch is attention.  Dad is right. We can keep Mom with us longer, but we have to focus on her, tease her, interact with her, and make her the center of conversation.
 
This is not a normal style of conversation. But it is worth the price to keep Mom around.
 
4:04 pm edt

Tuesday, July 4, 2006

No Longer the Center of the Universe
 

Some of this blog’s readers may be wondering if we ever found my Mom and Dad. We did, but not until late Saturday afternoon.

 

Just where where did we find Waldo … I mean, Babe!

 

You’ll remember that Janet and I were driving north from North Carolina on Saturday. It was a long, hot drive through heavy traffic on a Fourth of July weekend. When we had crossed the Delaware Memorial Bridge into New Jersey, I called my folks at their Media telephone number. As I called, I bet my wife Janet that my parents would be out at their farm in Oxford, PA.

 

I was wrong! They were “in residence” at their little Media apartment, and Mom answered the phone. I told Mom that I had been worried, since I had called their three residences—farm, seashore house, and Media apartment—and hadn’t caught them anywhere. Mom told me not to worry. She said that Dad was just driving them around.

 

(In circles! I thought. But I didn’t say this to Mom.)

 

I told Mom we’d be in touch on Sunday. Right then Janet and I were headed to the seashore house to meet up with our daughter Catie and her boyfriend Dave Raymond.

 

The next morning, Sunday July 2nd, we woke up at 5 AM and did a beach triathlon with Catie, Dave, my brother Tim and his son Andrew.

 

My cousin Dot D’Ignazio drove down and became our on-the-beach paparazzi. She chased us around shooting pictures as we did our swimming, biking and running. Then she raced to a 1-hour photo store and brought back pictures to present to us while we were still eating bananas and oranges on the beach.

 

Dad Is the Old Center of the Universe

 

On Sunday afternoon Janet and I drove up to Philadelphia and met our son Eric who was flying in from a wedding in Detroit. Eric arrived in Michigan last week from Japan, then spent four days visiting his friends and taking part in the wedding.

 

Yesterday morning, July 3rd, we woke up and Eric decided that he wanted to go back down to the seashore. At first I was upset. I had gone to walk with Mom around Media, and when Eric called, and Dad and I were sitting on the front porch of his and Mom's apartment. I was looking forward to a leisurely day in Media. Suddenly, with Eric’s phone call, I was faced with another hot car ride—back to New Jersey where I had just come from the day before.

 

This is ridiculous, I thought. The whole reason I was in Pennsylvania was to see my parents and to make sure my children saw my parents. The day before, Eric had told us, fresh off the plane, that all he wanted to do was see his grandparents. Now, he was turning his back on his grandparents and heading down to the shore to see his sister Catie.

 

I was upset with Catie because she had arrived in Avalon and had told everyone that she wasn’t budging. She and Dave were tired of driving, and they were planning to spend the next several days just relaxing at the seashore. If people wanted to see her, they could drive to the shore.

 

This seemed very selfish of Catie. Why wasn’t she more interested in seeing her grandparents? Wasn’t that the whole point we were in Pennsylvania?

 

The New Center of the Universe

 

Then I realized that what Catie was doing was healthy. For days I had been frantically chasing after my father, trying to figure out where he was, trying to schedule a get-together with him and my children. And Dad is elusive. He confounded me at every turn. He wouldn’t be pinned down. I said we’d go anywhere so we could meet up with him and Mom. But he wouldn’t tell me anything.

 

Catie’s plan was to stop the rat race. She established a new “center of the universe” – the seashore. She made me realize that we don’t have to chase Dad around, wondering where he will be, listening to him say that he doesn’t want to be “found.”

 

At first I was upset. I thought: how disloyal. We’re got to stick with my Dad. But then I realized that it’s time to move on. We can try to meet up with Dad, but that just makes me crazy. It’s time to look to Janet, me and our kids. If we figure out what is best for us, we will be okay.

 

And Dad wil be okay, too.

 

Today we are down in Avalon with our children and with my sister-in-law Teri. We are having a wonderful Fourth of July holiday. This is where we should be. This is our new center of the universe.

 

1:46 pm edt

Monday, July 3, 2006

A Walk Around Media with Mom
 

We made it to Pennsylvania!

 

Last night we ate dinner with my parents at Dad’s restaurant, D’Ignazio’s Towne House, in Media. Janet and I watched in awe as my normally grumpy Dad was charmed by our 27-year-old son Eric. Eric is a fluent Japanese-speaking businessman who works in a Japanese firm in Tokyo. He flew into Philadelphia yesterday afternoon from Detroit. Dad and I have trouble exchanging more than a few words. Eric and Dad were in an intimate, head-to-head conversation for more than two hours.

 

Today I woke up at my sister-in-law Martie’s and immediately thought of my Mom. She normally walks each morning with my brother Tim. Tim was down at the seashore in Avalon, New Jersey. Maybe I could be Tim’s back-up and take Mom for a walk in Media. I called Mom. She was still in bed. It was 8:30. She said she’d be ready in 15 minutes.

 

I jumped out of bed, took a shower, and drove to Media to meet Mom.

 

We walked all over Media. Mom was my guide. I was born in Media, and I walked on streets this morning that I have never seen in my life. Mom never grew disoriented or confused. “Turn right here,” she said. “Go straight up this alley.” “Turn left here.” She didn’t miss a beat.

 

We had breakfast at the Trolley Stop Restaurant on State Street in downtown Media. Mom and the waitress acted like old friends. Mom knew it was Monday, the day before July 4th. She and the waitress agreed that it was so quiet because all of the citizens of Media were on vacation, partying with their families.


I asked Mom about her jewelry. She told me the origin of all the rings, bracelets, and earrings. “How do I love thee,” Mom quoted from her necklace locket, “let me count the ways.”

 

I asked Mom how she felt about being almost 82 years old. She said, “I’m 82 years old, and there’s nothing I can do about it. So I just accept it."

 

I talked to Mom about her old house in Media. I asked her if she ever missed it. “No,” she said. “I don’t miss anything much any more. I just live each day, and I enjoy it.”

10:29 pm edt

Saturday, July 1, 2006

I'm Going Home Today!
 
I have storytelling at Whole Foods Market this morning. Then Janet and I climb into our green van and head home.
 
Actually we are going to New Jersey today, and then on to Pennsylvania tomorrow. We have tried tracking my parents down, but they remain elusive. One day they are in Media. The next day they are at the seashore. Now I hear they are going somewhere else.
 
It's okay.
 
We are not sure where Mom and Dad are, but we aim to find them.
 
Getting to Dad Will Be Fun!
 
Finding them will be fun. For example, maybe Dad will be at the seashore house in Avalon, New Jersey. But if he's not there, our daughter Catie and her boyfriend Dave will be there. And we can't wait to see them.
 
If they are not at the seashore, Dad and Mom might be in Media, PA, in their little apartment. But even if they're not there, we will be happy: our son Eric is flying in from Japan, and we'll be at the Philadelphia Airport to greet him at 3:20 PM Sunday afternoon!
 
If we can't find Mom and Dad anywhere else, we know where to look: the Farm! They have a farm out in Oxford, PA, near the Pennsylvania - Maryland border. And Monday or Tuesday (after we have visited Janet's mom Doris) we will head to the farm.
 
We love Doris. Doris stays put (relatively!). And she tells us where she is going to be because she wants to be found.
 
Babe (my dad) is a different matter. I've told him and Mom for weeks that we are coming to visit him and Mom. His response is to be more and more unclear about his whereabouts. He says: "Maybe we'll be here. Maybe we won't."
 
It's almost like a game of hide-and-seek.
 
So: Ally ally in free! Ally ally in free!
 
Babe, where are you?
 
7:31 am edt


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