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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.

Archive Newer | Older

Thursday, December 29, 2005

Happy New Year!
 
I planned to continue writing my blog this week, but it's not going to happen. We are visiting our relatives -- including Mom and Dad -- in Pennsylvania. I will resume writing the blog next week when I am back in North Carolina.
 
I wish all my readers a
 
HAPPY, HEALTHY and SAFE NEW YEAR!
 
Thank you for reading my blog in 2005. I hope you'll enjoy reading it in the coming year.
 
-- Fred
 
5:04 pm est

Sunday, December 25, 2005

Merry Christmas!
 
I'm taking the day off to be with family and friends. I will return bright and early tomorrow morning, December 26th.
 
I wish all my readers a safe, healthy, and happy holiday.
 
- Fred D'Ignazio
 
7:38 pm est

Saturday, December 24, 2005

Women's Health and Alzheimer's
 
If you are a woman, do you know the biggest threat to your life? It's not breast cancer. It's heart disease. This one disease kills almost 489,000 women in the U.S each year -- more than all forms of cancer combined. A Mayo Clinic report lists the top eight threats to women's health:
  1. Heart disease
  2. Cancer (lung, breast and colorectal)
  3. Stroke
  4. Chronic Obstructive Pulmonary Disease (associated with lung cancer, emphysema and smoking)
  5. Alzheimer's Disease
  6. Diabetes
  7. Accidents
  8. Pneumonia and influenza

Some surprising facts:

Colorectal Cancer - This is often thought of as a "man's disease," but as many women as men (28,000) die from this disease each year.

Stroke - Women make up two thirds of the 163,000 people dying of stroke each year in the U.S. Stroke is the number three killer of women but also a leading source of disability among women.

Diabetes - An estimated 5 million Americans have diabetes and don't know it. Since they do not get treatment they only become aware of their disease when they develop life-threatening complications, including blindness, kidney failure and severe nerve damage.

Falls - One out of every three people over 75 falls each year. Almost eight thousand women die from these falls.

ALZHEIMER'S AND ESTROGEN

As you can see, Alzheimer's Disease ranks fifth among the leading threats to women's health. Almost 42,000 women die from Alzheimer's each year. This is double the number of male deaths.

Why does Alzheimer's Disease affect so many women? Until recently scientists speculated that this was because women live longer than men. Dementia (including Alzheimer's) strikes half of all people over 85. Most of these victims are women because there are many more "eighty-something" women than men.

But now scientists have uncovered a surprising new culprit.

Post-mortem studies by a team from the University of Chicago report that women with Alzheimer's have a lower estrogen level in their brains than women without the disease.  Doctors think that a deficiency of brain estrogen causes the build up of the brain "plaque" that characterizes Alzheimer's.

This study was led by Dr. Rena Li, senior author of the paper and principal scientist/associate professor at Sun Health Research Institute in Sun City, Arizona. Dr. Li and her colleagues conducted the first study of brain estrogen, rather than blood estrogen, in women.

Hormone replacement therapy works on raising the estrogen in the bloodstream. It has not been particularly successful as a defense against Alzheimer's and it carries an unacceptable risk of breast cancer, heart disease and stroke. But this new development allows scientist to focus on raising estrogen in the brain as a means to protect women from Alzheimer's.

8:03 am est

Friday, December 23, 2005

Why Does She Pick Her Teeth?
 
I've noticed that as I get older, my gums are receding. As a result it is easier to get food stuck in between my teeth after meals. I carry a toothpick and I use it a lot.
 
I also floss regularly. Everyone wants a clean mouth, right?  And there are unexpected perks from flossing. See my blog article on how flossing can help lower the risk of Alzheimer's!
 
My mom is like me. She picks at her teeth. But, boy, she sure does it a lot. I notice it around mealtime. She does it even before we start eating.
 
She does it when she has been left sitting for a while without any interaction with other people. This is a big "No-No" with my father. If we are all together and we leave Mom out of the conversation he stops everything and points to her. At times like these she almost always looks withdrawn and detached from the conversation. She seems to be lost somewhere inside herself.
 
And she is picking her teeth.
 
There seems to be no reason for Mom to pick her teeth. Doctors call this irrational "tic" an SMD -- Stereotypic Movement Disorder:
Stereotypic movement disorder is characterized by repetitive, but non-functional motor behavior which has lasted at least 4 weeks.
What are the causes of SMD?
The causes of this disorder, when it occurs in the absence of other conditions, are unknown. The movements appear to increase with stress, frustration, and boredom.
Maybe Mom has itchy teeth. I don't know. Next time I'm with her in Pennsylvania, and if I see an opportunity, I'm going to ask her. My guess is she won't even realize she's doing it.
 
We'll see.
 
7:46 am est

Thursday, December 22, 2005

Spending the Holiday with Alzheimer's
 
The holidays are a dual-edged sword. For many people, holidays are a time of spirituality, reunions with families and friends, parties and great joy. For others, the opposite is true. For millions of people holidays are a dreaded time of loneliness, sadness, and depression. My friend who does family counseling sees more people during the Thanksgiving - New Years holiday period than at any time during the rest of the year.
 
If you have a close friend or relative who has Alzheimer's Disease, holidays can also be unpredictable. According to the Hamden Journal in an article entitled "Holidays Can Be Painful Reminders of Loss:"
While everyone else seems to be reveling in holiday spirit, it may be just another day for an Alzheimer's patient who has lost cognitive skills. For that person's family, there may seem to be little to celebrate as they care for a person who may not even know who they are. It could feel as if they lost their loved one and ended up with a stranger.
MOTHERS & DAUGHTERS LUNCHEON
 
I feel fortunate that my Mom is in early-stage Alzheimer's and still feels caught up with the Christmas spirit. This is possible because of the support of her family in Pennsylvania. They visit her, spend the night at hers and Dad's tiny apartment, and invite her out for Christmas festivities.
 
I called Mom this morning, and she didn't even have time to talk with me. "I'm going out with Lisa and Nancy," she said, "and Nancy's mother. And some other people ... I'm not sure who. I have to get ready."
 
I learned from my brother Owsley who was there with Mom that the other people were Mom's lifelong friend Naomi Tercha and her daughter Cindy. The six women were going to a Holiday "Mother and Daughter Luncheon" at a popular local restaurant.
 
Before my Mom ran off to continue getting ready I asked her if she was excited about Christmas. "I am," she said. But then, as she always does, she changed the topic to the weather. "It's cold here," she said. "But there's plenty of sunshine. I can stand the cold as long as the weather stays nice."
 
Then off she went.
 
ALZHEIMER'S AS A BONDING EXPERIENCE
 
Author Elinor Fuchs has just published a new book entitled, "Making an Exit: A Mother-Daughter Drama Involving Alzheimer's, Machine-Tools, and Laughter." Fuchs, a drama professor at Yale, says her training in the theater helped her cope with her mother's Alzheimer's Disease.
 
When her mother Lil came down with Alzheimer's, Fuchs lived far from her mother Lil. She had to set up an intricate, long-distance system of caregivers for her mother who lived in Washington, DC. When Lil's condition worsened Fuchs moved her first to an assisted-living facility and later to a nursing home. Each transition was difficult.
 
There was a bright side to the disease. When she was growing up, Fuchs and her mother had always had a chilly relationship. When Lil came down with Alzheimer's the relationship changed dramatically, and the two women finally began to bond.
 
At first Fuchs challenged her mom when she came up with absurd statements. But, after awhile, Fuchs says she learned to go with the flow. "I learned how to get inside my mom's mind," she said. "Once I got inside, then the playfulness kicked in."
 
The last phase of Lil's life was hard on both mother and daughter. But it brought the two women closer together. In her book, Fuchs looks at the experience in a positive light:
Even when [Mom] was struggling to speak, the word she used the most often was "love."

When people hear the word "Alzheimer's," it seems so final. However, this was not so.
It somehow brought out a potential that was never there before.
Fuchs says the experience with Alzheimer's was hellish, but she doesn't regret the years she spent caring for her mother. She had spent most of her life distant from her mother, emotionally as well as physically. Ironically, it was the disease that finally made them feel like mother and daughter, even if the roles were reversed.
 
"I certainly ended this experience feeling like I did have a mother," says Fuchs.
11:12 am est

Wednesday, December 21, 2005

Alzheimer's: Brushing Teeth Good - Daydreaming Bad

Thousands of scientists around the world are spending billions of dollars trying to find the cure for Alzheimer's Disease. No wonder. Alzheimer's will claim up to 80 million victims, world-wide, over the next 35 years.

New research results are published every day. I keep a "Google Alert" on my desktop. Each morning it is full of news stories based on Alzheimer's research. Many of these reports are low-key, focusing on  small victories and incremental steps in the fight against Alzheimer's. But other stories are startling.
 
FLOSS YOUR TEETH

For example, at a recent conference in Washington, DC, researchers linked periodontal disease to Alzheimer's Disease. A team of researchers from the University of Southern California (USC) studied dementia in twins. Due to genetic factors, if one twin has Alzheimer's Disease, there is a 60% chance that the second twin also has it. However, in 109 sets of twins, where only one twin had Alzheimer's, the twin with the disease was four times more likely to have a history of periodontal (gum) disease during middle age.
 
Gum disease can be reduced by good oral hygiene, including brushing and flossing your teeth. So is it as simple as "floss your teeth to lower the risk of getting Alzheimer's Disease?"
 
Not so simple. But every day scientists are discovering links between gum disease and all sorts of ailments in the body. Scientists say that the bacteria present in gum disease and the inflammation itself seem to have a way of spreading to other parts of the body and triggering body reactions as drastic as strokes, heart disease, and Alzheimer's.
 
NO DAYDREAMING
 
Researchers at Washington University in St. Louis are using the latest techniques of brain imaging on patients with dementia, including magnetic resonance imaging (MRI) and positron emission tomography (PET). MRI and PET can now be used to conclusively diagnose the presence of Alzheimer's Disease (versus other forms of dementia). In the past, Alzheimer's could only be diagnosed post-mortem after conducting an autopsy.
 
Perhaps in the near future doctors will be able to use MRI and PET brain scans to catch very early stages of Alzheimer's Disease so their clients can start treatment immediately to cure or slow the progress of the disease.
 
But Washington University scientists aren't waiting for the near future. They have already made the connection between Alzheimer's and daydreaming. Since both occur in the same part of the brain, the Washington University research team issued a report saying that daydreaming might trigger Alzheimer's. According to The Healthier Life:
The report theorises that youthful daydreaming may prompt elderly Alzheimer's. That's right, every time you've stopped to reminisce about a happy holiday or imagined yourself accepting an award, according to the research team you may have inched yourself just a little closer to dementia.
So, should we all make an effort to stop daydreaming? No way. The only thing the team determined was that the same parts of the brain are affected by daydreaming and Alzheimer's Disease. They haven't determined a causal connection between the two.
 
The take-away here? Flossing and brushing your teeth are good because they might help lower your risk of Alzheimer's Disease. And even if they don't, they help you in lots of other ways. And we are all still permitted to daydream, even if a little wild daydreaming at Washington University caused a temporary mental decline in the scientists' own brains.
7:54 am est

Tuesday, December 20, 2005

I'm Proud of My Sister and Brothers
 
Last summer my father was on the warpath. Nothing pleased him. He was mad at everybody. What was his problem?
 
Support. The man wanted support. He was watching my mother make her slow decline into Alzheimer's Disease, and he was all alone.
 
No one had his back.
 
Dad felt that his and Mom's friends were not stepping up to the plate and helping out. And he was about to disown his children.
 
He raged. And we finally heard him.
 
Mom's friends have taken up a lot of the slack. They invite Mom and Dad to their homes. They take them out to dinner and to the theater. They play cards with my mom. They call Mom and look in on her more often.
 
The grandchildren have stepped up their efforts to see Mom and Dad and to let them know they love them. Many of the grandchildren are teens or young adults. They all try to maintain a personal relationship with their Mom Mom and Pop Pop.
 
MONTHLY MEETINGS
 
Ever since this summer the four kids have been holding monthly meetings (or almost monthly) to try to work on common concerns about both Mom and Dad. We have lots of concerns, including doctors, medicine, medical insurance, caregivers, driving, long-term care, estate planning, I.D. bracelets, alcohol, diet, physical activities, social activities, etc.
 
I live long distance, so I try to stay in touch by calling Mom and Dad every day. I email and call everyone to see what they are up to.
 
SUPPORTING MOM & DAD EVERY DAY
 
My sister Lisa, her husband John, my brother Owsley and his wife Teri, and my brother Tim and his wife Nancy do all the work. They do something to support my parents every day. Here are just some of the many things they now do for my parents:
  • Lisa had my parents' apartment redone while my parents were in New Jersey at the seashore. She brightened up the apartment and added several conveniences that make their lives a little easier.
  • Tim and Nance had my parents' seashore home redone while my parents were away. The house is very old, and they redid several parts of the house to update it and make it more modern and comfortable.
  • My brother Owsley is the "shadow." He watches my parents like a hawk. He lives with them, cooks for them, and cleans up behind them. He has an amazing eye for detail, so he spots things that need doing before they become a problem.
  • Tim goes on daily morning walks with Mom. Physical exercise is supposed to help slow her Alzheimer's. Tim has been known to get Mom out of bed to walk with him.
  • Lisa picks my Mom up a couple times a week and drives her all around doing errands, shopping for clothes, having her hair done, and taking her out to lunch.
  • Lisa and John often walk Mom and Dad home after they eat dinner each evening at their nearby restaurant.
  • Nancy, Timmy and their family stop by frequently to visit Mom and Dad and to check on them.
  • Lisa helps out at my father's office in Media. She goes through my mom's old clothes to help get her clothes cleaned and to update and simplify her wardrobe.
  • Everyone checks on my parents' refrigerator and throws out old foods.
  • Everyone checks my parents' answering machine to field calls that my parents have missed.
  • Everyone helps drive my parents around, even though they still have their car.
  • Everyone asks my parents to their home for visits and meals.

My Dad is a much happier man. He seems less grumbly and out of sorts these days.

OUR NEXT CHALLENGE

Our next challenge is looming on the horizon: Florida. What to do about Mom and Dad when they make their annual pilgrimage to Key Largo. They are snow birds, and the icy roads and the freezing temperatures around Philadelphia are making Mom yearn for the sunny South.

Thanks to Dad's tirade, he and Mom have a real support system at their home base in Media. But if they decide to return to Florida, what kind of support will they have? We can all visit them, but it won't be the same.

Stay tuned.

6:49 am est

Monday, December 19, 2005

Alzheimer's Disease: A Global Ticking Time Bomb
 
Alzheimer's Disease is a not just a problem in the United States. It is a global epidemic. Experts predict that 16 million people will have Alzheimer's Disease in the US by 2040. In that same year, worldwide, 81 million people may be suffering from the disease.
 
According to a report on msnbc.com:

A team of scientists from Alzheimer’s Disease International estimate 24.3 million people currently suffer from dementia. Cases are rising by 4.6 million a year or one every 7 seconds.

Without prevention, the number will hit 42 million in 20 years and nearly double again by 2040 with the bulk of the increase in India, China, south Asia and the western Pacific.

Surprisingly, the number of people with Alzheimer's Disease will be three to four times higher in developing countries than in developed regions.

The rate of growth of Alzheimer's Disease is also disturbing. Any disease that doubles every 20 years is a potential global disaster. If we follow the projections:

  • 24 million people with Alzheimer's in 2005
  • 42 million people in 2020
  • 81 million people in 2040
  • 160 million people in 2060
  • 320 million people in 2080
  • 640 million people in 2100
  • 1 billion-plus people with Alzheimer's in 2120

What is causing this global doubling of Alzheimer's Disease? Part of the reason is that more people are living longer. Alzheimer's disease only affects 3 percent of the population who are under 60, but it hits 30-40% of all people living past the age of 80.

Developing countries have given little attention to Alzheimer's Disease because of people's relatively short life span. Health agencies in the developing world must turn their attention to Alzheimer's soon. By 2020 more than 75% of all people with dementia will be from the developing world. (See manbir-online.)

10:44 am est

Sunday, December 18, 2005

What Is a Blog?
 
You wouldn't believe how often I get that question when I tell people I have a blog on the Internet.
 
"Blog" is shorthand for weblog. According to Rebecca Blood's We've Got Blog: How Weblogs Are Changing Our Culture, the word weblog was coined by Josh Barger in December 1997. Josh was one of the first people to publish a weblog, or blog, which makes him one of the first bloggers.
 
We've Got Blog has a neat introduction to blogging:
Weblogs are the place for daily stories, impassioned reactions, mundane details, and miscellanea. They are as varied as their maintainers, and they are creating a generation of involved, impassioned citizens, and articulate, observant human beings.
 
They are a training ground for writers -- and there is fine writing being posted daily on hundreds of sites. They are platforms for intelligent reaction to current events and ubiquitous pundits. They are repositories of Web trivia. They are desktop broadcasting. They are, as one early weblogger put it, pirate radio on the Web.
"Blogs" became popular during the 2000 and 2004 Presidential Elections. "Hearty political pundits" (Forbes Magazine) spouted their edgy political opinions and became a new media channel. To learn more about political bloggers click on the Forbes link and look at five of the best political blogs.
 
Bloggers today represent an alternate source of news on almost any topic -- from the environment, to politics, to religion, to new discoveries in science and technology.  Even farmers have their own blogs: e.g., the University of Illinois's The Farm Gate, "Where Farm Decision-Makers Start Their Day."
 
The mainstream media saw how popular bloggers were becoming and they now sponsor regular blogs by their own writers. (As an example, see Joel Achenbach's Achenblog sponsored by the Washington Post.) Now almost every newspaper, magazine, TV show and radio show hosts several official blogs written by their staff writers.
 
DIARIES FOR 21ST CENTURY TEENS
 
According to the Bismarck, North Dakota, Tribune:
The Pew Internet and American Life Project estimates one in every five teenagers on the Internet keeps a blog. That translates into nearly 4 million teens talking about interests, writing about feelings and sharing personal information via dozens of popular online journaling Web sites like Xanga.com and MySpace.com.
My daughter is a 16-year-old junior in high school. I drive car pool for my daughter and her classmates three days a week. I get to overhear lots of teenage banter, joking, jibing, and opinion. Blogs are a daily discussion topic. Every kid in the car has a blog. The students tell each other what they've written in their blogs, what others have said about their blogs, and what they're planning to write the next day.
 
When I was a teen in the 1960s I kept a diary, just like lots of other kids. My diary had a lock and a key, and I hid it in the bottom drawer of my desk underneath a stack of papers. I wrote things in my diary that I'd never tell anyone about, even my best friends. (In fact what I wrote usually was about my best friends.) I was paranoid about my diary, fearing that my parents or my sister might find it and read it.
 
Today teens publish their deepest, most secret thoughts in their blogs. And the whole world can read them. In fact, that's the point.
 
SO, WHAT'S A BLOG?
 
As you can see, a blog can be many things. To help you figure out what a blog is, here's a list of blog characteristics. Any given blog may have only a couple of these characteristics:
  • It's a diary -- A blog is very personal. It lets you share things you normally wouldn't share with anyone. But somehow it feels safe to share it on a blog.
  • It's a filter -- The Internet is vast. Bloggers are passionate about some narrow subject. They know a lot about this subject and they have strong opinions. Bloggers filter the infinite information on the web and compress it to small, manageable chunks, with an edge.
  • It's real-time -- A blog is updated daily. You can count on new information every day.
  • It's a revolution -- Blogging is simple and free. Everyone can blog. You don't need an agent, an editor or a publishing house. You go online, set up a blog (see below), and start writing whatever comes out of your head. Millions of people around the world start blogs every day.

START YOUR OWN BLOG

If you want to start a social blog, then you can go to MySpace.com or Xanga.com.

To start a general-purpose blog about any topic, go to Blogger.com. It takes three steps to start a new blog on Blogger. If you have something on your mind, you can be sharing it with the world in under ten minutes.

Blogging is a global phenomenon. For a mind-boggling look at look at blogs from around the world, click on the "Random Blogs" and the "Blogs of Note" links on the Blogger.com page. Click on the "Next Blog" link and you can scroll through blogs like channel surfing. Spend a few minutes surfing the blogs and you'll be amazed at this new avenue for self-publishing.

2:51 pm est

Saturday, December 17, 2005

50 First Dates with Stretchy Boy
 
Dot and Mom with Stretchy Boy
 
My mother has early-stage Alzheimer's Disease. Her bouts with forgetfulness reduce her to anger, frustration and despair.
 
Mom's "hissy-fits" are legendary in our family. No wonder! Put yourself into my mother's shoes. Just think what it must be like to go through your day just as you have done for 81 years ... and you can't remember the simplest things.
 
You wake up each morning and the world is new. You don't remember where you put your glasses the night before. You don't remember what you are wearing. You don't remember where you put yesterday's clothes.

You walk out into your apartment, and it's new, too. If something is out of place, you wonder why it's there. It's as if someone came through your house, messing up your orderly world, and then slipped out the front door just before you woke up.
 
Newness is a virtue; it's a great alternative to boredom. But if everything is new each day, is it possible to function?
 
This is the way my mom lives each day. It is sometimes the way she lives each hour.
 
HER SWEET DISPOSITION
 
My mom is startled so often by circumstances that we sometimes forget that underneath her surprise and frustration is her sweet disposition.
 
When Mom is not upset by things she is still the courteous, generous, kind Christian lady she's been her entire life. It is amazing that even with the storms of Alzheimer's raging through Mom's life, her basic good nature still exists. Sometimes it is hidden by exasperation and bewilderment, but it is still there.
 
50 FIRST DATES
 
Adam Sandler and Drew Barrymore recently starred in the comedy Fifty First Dates. Sandler is Henry Roth, a man afraid to make a commitment until he meets beautiful Lucy (Barrymore). He thinks Lucy is the girl of his dreams until he takes her out on their second date and she doesn't have a clue who he is. Lucy has short-term memory loss and can't retain any information. Even after dozens of dates, Sandler can't get to second base with Lucy because she always thinks it's their first date.
 
This is what it's like dealing with my mother. For example, I gave her an outfit last summer for her birthday. She wore the outfit that same evening and was grateful to me for having given it to her. When I visited Mom a couple weeks later, I noticed she had on the same outfit. I complimented her, and she said, "Yes. Isn't it nice? I have no idea where it came from."
 
I reminded her that I had given it to her. But I'm sure that the next morning she had no clue where the outfit came from.
 
My dad, my brothers and sister all have dozens of stories like this one. And it's okay. That's just the way it is. "Live life one day at a time" has special meaning for our family.
 
LIBBY MEETS STRETCHY-BOY ... AGAIN AND AGAIN
 
Colin Patrick Haggerty was born to Courtney Sypher and Casey Haggerty on Thursday, October 13, 2005. Courtney is the daughter of my cousin Dot D'Ignazio. (There are several blog articles on Dot and her client, Skip, who has Alzheimer's. For example, click here.)
 
Colin's nickname is Stretchy Boy. His grandmother Dot gave him this name because he stretches all the time.
 
When I was home in November for my Dad's 88th birthday we all visited Stretchy Boy. My wife Janet, my Mom and I all got the opportunity to walk over to Stretchy Boy's house, since it is just a couple blocks from my Mom's apartment. Here is a picture of Mom and Stretchy Boy on a cold afternoon in mid-November:
 
Mom and Stretchy Boy Yawning TogetherWhen I held Colin, he acted sleepy and closed his eyes. But when Mom took him, he woke up. He seemed fascinated with Mom's face. And when he did something like stretch or yawn, so did my Mom! She talked with him just like an adult. And he gazed at her as if to say: "What a strange and wonderful person."
 
We spent an hour at Courtney and Casey's house, but Mom and Colin bonded forever.
 
Or so it seemed.
 
We left Stretchy Boy's house and walked back to Mom's apartment. We had dinner that night at my father's restaurant. I told my dad about the wonderful time Mom had with Colin. Mom turned to me as I was talking to my dad and gave me a puzzled look. "I did?" she said.
 
The next day, Dot came by my parent's apartment. I had taken lots of pictures during our visit with Colin. I showed Dot and Mom the pictures. She was delighted with them, but didn't recall the visit until I reminded her. Later in the day I referred to Colin, and Mom asked me, "Colin who?" When I told her that Courtney had just had a baby named Colin, Mom said, "She did?"
 
Just yesterday Dot brought Colin to my parents' apartment so my dad could meet him for the first time. She got Dad to do something he never did with my kids: Hold the baby. Dad has always said he is uncomfortable around babies. But this opportunity was too good for Dot to miss. Colin and my parents represent four generations of family. And with Dot's mom and dad gone, she looks to my dad as the head of the family, like her father.
 
It was a marvelous occasion having Pop Pop D'Ignazio cuddle little Stretchy Boy Haggerty. But when Dot told me the story on the phone yesterday afternoon she said: "Your Mom was so friendly with me, just as she always is. And she was tickled to see Colin. But I had to explain, all over again, who Colin was and where he came from. For Aunt Libby it was like meeting Colin for the first time."
 
So Mom and Colin have met again. I hope they keep meeting. And if they do, someday Mom and Stretchy Boy will celebrate their fiftieth "First Date" together.
11:39 am est

Friday, December 16, 2005

Two Fires a Day ... One Fatal Fire Every Month
 
Last year one third of all deaths from residential fires claimed the lives of people over 65, a group that represents only 12% of our country's population.
 
Many of these fires occur in assisted-living facilities that now have more than one million residents across the U.S. In fact, two fires a day are reported in assisted-living facilities. And, on the average, one person a month dies from these fires.
 
An assisted-living facility is midway between a retirement community and a nursing home. Nursing homes have full-care medical assistance seven days a week, 24 hours a day. Assisted-living facilities offer 24-hour assistance and supervision, and medical care only as needed.
 
For an overview of residential facilities for seniors, see my earlier blog article, "An Institution or a Private Caregiver?"
 
THE INSPECTION PROBLEM
 
Today's cover story in USA Today is entitled "Fire Risks Threaten Assisted Living." The story is based on a 50-state study by the staff of the newspaper. Reporters found that half of the country's 15,000 nursing homes violate federal fire safety standards. But at least nursing homes are federally inspected.
 
None of the 36,000 licensed assisted-care facilities has to comply with federal inspection. And it shows. Assisted-care facilities average twice as many fires as nursing homes. And there are many thousands more facilities that remain unlicensed. These include converted homes and giant apartment complexes.
 
Among the paper's findings are the following:
  • Four states (Massachusetts, Montana, Minnesota and Hawaii) have no standards. Only six states require sprinklers in all facilities. Fewer than half the states require smoke alarms that alert fire authorities.
  • Thousands of smaller, unlicensed facilities never receive visits from fire and building inspectors.
  • Four out of every ten state fire marshalls say that their state's safety standards are "poor or weak."

If you or a loved one is moving into a nursing home or assisted-living facility, be sure to check on its fire safety standards. This is a life or death matter that, unfortunately, you can't take for granted.

10:49 am est

Update on Prescription Drug Prices
 
Yesterday I promised to follow up on the issue of prescription drug prices for seniors. I called my parents' pharmacy in Media, PA, and they said my parents were on "some kind of plan."
 
I chased my father all day and finally got through to him on the phone this morning. "Don't worry about it," he said. "We're covered. We have Blue Cross / Blue Shield."
 
I told my dad that the Federal Government has a new Medicare Drug Prescription Plan that begins January 1, 2006. I warned him that he only had until May 15, 2006 to register for 2006. Otherwise he would have to wait until the end of the year and he wouldn't get coverage until 2007.
 
"Don't worry about it," my dad repeated. "We're covered. If we want to get in later, we'll get in. I'm just taking this one day at a time.
 
"Right now, I'm putting on my clothes, and your mother has given me the job of making the cereal while she goes out walking with your brother."
 
So, that's it, for the moment. I'll let you know when I make more progress.
10:38 am est

Thursday, December 15, 2005

Alzheimer's ... One Drug ... One Year ... $1,663.08

When I was home with my parents the last time I went with them to the local pharmacy to fill their drug prescriptions for Alzheimer's medication. Just one month's refill of one drug (Aricept or Namenda) cost my parents $138.59.

My wife Janet has health insurance through the State of North Carolina. (My wife works for North Carolina State University in Raleigh.) We are accustomed to high co-pays on prescription medicine, but I was shocked when I saw my parents' bill. Together, my mom and dad are taking up to twelve prescription medicines. If this is the monthly refill bill for just one of the twelve, imagine the size of their monthly drug bill.
 
For example, if they are paying $138.59 a month for just one prescription (e.g., thirty 10 mg. tablets of Aricept), that comes to $1,663.08 annually. If their other prescriptions are as costly, their annual drug bill might be as much as $20,000.
 
THE NEW MEDICARE PRESCRIPTION PLANS
 
The new Medicare prescription plans are now available. Enrollment is continuing until May 15, 2006. Coverage begins January 1, 2006.
 
To see if I could lower the high costs my parents are incurring above, I went to one of these plans: the AARP MedicareRx Plan. I followed the steps to determine prescription costs for my parents' medicines:
  1. I entered my mom's two Alzheimer's drugs: Aricept (10 mg) and Namenda (10 mg).
  2. I entered my parents' zip code and the computer found a list of local pharmacies.
  3. I checked the name of my parents' neighborhood pharmacy: Murray-Overhill on State Street in Media, Pennsylvania.
  4. I checked the box that said my parents did not qualify for extra, low-income assistance.

The program came up with a prescription drug plan for my parents for an annual supply of Aricept and Namenda. The total plan cost is $1,122.43. This covers their annual premium cost and the cost of 12 months of Aricept and Namenda, obtained from Murray's, their local pharmacy.

This fee of $1,122.43 for two medications compares quite nicely to $1,663.08 for just one medication.

MORE RESEARCH IS NEEDED

Today I'm going to call my Dad in Media and tell him what I've learned. I'm going to ask him if he and Mom are on any kind of prescription drug plan. I'll also call Murray's Pharmacy in Media to see what they know. I'm going to visit the official government Medicare website. And I'm going to start checking out message boards on the Internet that are run by Alzheimer's support groups.

I'll let you know tomorrow what I find out. Stay tuned.

8:07 am est

Wednesday, December 14, 2005

Do Not Call Registry - A Help for Seniors
 
When I was home with my parents in November I noticed that my parents were getting a lot of telemarketing calls. I told my father about the National Do Not Call Registry. He asked me to sign him and my mother up, using all their phone numbers.
 
You can sign up to have all your phone numbers removed from telemarketing lists by clicking here.
 
Seniors like my parents are especially vulnerable to calls from telemarketers. They would never tolerate dozens of people coming to their front door seeking money. But they politely talk to salespeople who call them on the phone.
 
My mother has early-stage Alzheimer's Disease. She is also a very kind-hearted person who has donated thousands of dollars to her church and to various charities during her lifetime. If a telemarketer called her with an appeal for money that touched her heart she would probably give money without a further thought. And, since she has Alzheimer's, she might not remember giving the money.
 
My mom is especially vulnerable to telemarketing fraud. According to the National Center for Victims of Crime:

Every year, Americans lose more than $40 billion to telemarketing fraud. More than one-half of the victims of these crimes are older people. Illegal telemarketers direct anywhere from 56 to 80 percent of their calls at older consumers1. As the number of Americans over age 65 dramatically rises in the next two decades, seniors will become an increasingly inviting target for criminals who steal with telephones.

Studies show that many older people do not make the connection between illegal telemarketing and crime. They may not understand that dishonest telemarketers are not shrewd business people but criminals who are trying to steal their life savings.

To help reduce the risk from telemarketers and telephone scams, put your family's phone numbers on the National Do Not Call Registry. You can register as many numbers as you like, all for free. Once you are registered, it is illegal for telemarketers to call you for the next five years.
 
I registered my parents this morning, and after 30 days they will be off-limits to telemarketers and unethical telephone hucksters until the year 2011.
 
This will not give you complete protection, since legitimate charities, political organizations, and companies with whom you already do business are exempt from the list. However, if you do get a call that you question, you can go to the site and immediately file a complaint.
 
To reduce your parents' risk of being defrauded you should frankly discuss these issues with them. And you should respectfully find a way to reduce a senior with Alzheimer's access to a checkbook or credit cards.
8:32 am est

Tuesday, December 13, 2005

Living Independently Through High Tech
 
My father is set on not going into a retirement community. He is 88 years old. My mom is 81 years old and has early-stage Alzheimer's. Dad is Mom's primary caregiver.
 
We've all worried that my dad, who has a heart condition and high blood pressure, might suffer a stroke or heart attack, and my mom would be incapable of helping him.
 
Also, if my mom had an accident or health emergency, my dad might not be able to cope. He is so arthritic that he cannot move quickly except with great pain.
 
My two brothers and my sister live in the area, and they often drop by and help my dad and mom. My parents have considered hiring a professional caregiver, but they keep putting it off. At the moment, they live on their own.
 
My Mom and Dad are stubborn, independent people. We admire them immensely. But we also worry about them.

SECURITY THROUGH SENSORS
 
My brother Owsley sent me an article yesterday that had appeared in Wall Street Journal Online. The article, "Keeping Tabs," suggests that there are high tech gadgets that might give our family peace of mind while our parents continue to live independently.
 
Devices known as PERS -- Personal Emergency Response Systems -- have been available for years. Better known as "Panic Buttons" they are worn by a handicapped person or a senior living alone. If the person has need for emergency assistance they hit the button. A signal is sent to a switchboard where a person or machine automatically dispatches an ambulance, EMT (Emergency Medical Technician) or other first responder.
 
However, what happens if the person falls and is knocked unconscious. Or because of their arthritis, they can't press the panic button. Or their wife is so upset and confused (due to Alzheimer's) that she forgets to press the panic button?
 
The newer systems are ready for this type of situation. They focus on external monitoring of the home by trained personnel and by family members through electronic surveillance.
 
The newer systems are known as home monitor systems. Wisely they retain the panic button, but they also include several sensors and monitors that detect motion and temperature changes in different rooms in the senior's house. It allows a relative to track their parent or other loved one's movements around the house.
 
A home monitor system operates 24-7. It can tell if a person changes their patterns of movement. For example, if the senior begins getting up more frequently at night due to bowel or bladder problems, there will be a record of this change in behavior. Even more important, if the senior's movement stops abruptly, the system will catch that and send out an alarm.
 
QUIETCARE
 
One system, QuietCare, is made by Living Independently Group Inc. in New York. According to the Journal article:
Sensors are placed throughout the home: at the refrigerator, in the bathroom and at the front door, among other locations. When someone opens the refrigerator door to get breakfast, for example, the sensor detects the movement and logs it by sending a wireless message to a base station.
 
... It also calls under certain conditions that could indicate a fall or other emergency, such as a person failing to leave a bedroom in the morning or remaining in the bathroom too long.
A relative or caregiver not residing with the senior will receive an immediate call if an emergency occurs. Or they can elect to keep track of their relative on a secure website on the Internet, or receive periodic text messages on their cell phone.
 
Installation of the QuietCare system costs from $199 to $299. Monthly service (tied in with ADT Security Services) runs from $79.95 to $89.95.
 
QuietCare also monitors household temperatures. This is an appealing service. Right now there is snow on the ground in Pennsylvania, and termperatures dip at night into the teens and twenties. I don't like the idea of my parents' furnace not working and our not knowing about it.
 
And since all the information that is collected is sent to a secure Internet website, I can keep tabs on Mom and Dad daily, just by logging onto the Internet. My brother Tim lives only a couple miles from my parents, so he can personally check on them. But my sister Lisa and my brother Owsley live approximately 20 minutes to 45 minutes away. And I live in North Carolina.
 
THERE'S STILL A LOW-TECH SOLUTION
 
Even if my parents agree to install a home monitoring system, there is a good way to keep in touch with them each day. I can call them on the telephone. Twenty-four-hour sensor readings are great for emergencies, but there is no substitute for a daily phone call. My mom gets a charge each day when I call her. And so do I.
12:58 pm est

Monday, December 12, 2005

Not All Dementia Is Alzheimer's
 
My father and brother took my mother to the Mayo Clinic last summer. Mom had been showing memory loss for a couple years, and my dad wanted to get her a full-scale evaluation to see what was the matter.
 
The doctors told my mother she had early-stage Alzheimer's. She was told to take medications (Aricept and Namenda), exercise, and lead an active lifestyle to slow the progress of the disease.
 
My mom has Alzheimer's Disease, but this is not true for everyone who shows Alzheimer's-like symptoms. One of the best outcomes of Mom's Mayo visit was to find out that her memory loss wasn't caused by other serious health issues.
 
Memory loss can be caused by, among other things:
  • Physical ailments such as high blood sugar, diabetes, Parkinson's Disease, heart disease
  • Emotional ailments such as anxiety and depression
  • Excessive use of alcohol
  • Fatigue
  • Certain medications including statin drugs
  • Drug interactions
  • Aging (some memory loss begins normally after the age of 50)
  • Non-Alzheimer's Dementia
  • Alzheimer's Disease

For a comprehensive look at memory loss go to the Wrong Diagnosis website and look at the article on Forgetfulness.

NON-ALZHEIMER'S DEMENTIA

Alzheimer's Disease is the most common form of dementia. But what is dementia? According to a CNN Health/Library report (from MayClinic.com):

Dementia is a neurological disorder that affects your ability to think, speak, reason, remember and move. While Alzheimer's disease is the most common cause of dementia, many other conditions also cause these symptoms. Some of these disorders get worse with time and cannot be cured. Other types can be treated and reversed.

The three most common forms of dementia are Alzheimer's disease, vascular dementia and Lewy body dementia. Sometimes, a person can have more than one of these problems at the same time.

Vascular dementia occurs when blood arteries feeding the brain become blocked or constricted, often due to high blood pressure or a stroke. A person can suffer from Alzheimer's Disease and from vascular dementia at the same time. Symptoms of vascular dementia include difficulty thinking, speaking, seeing, walking, and loss of bladder control.

Lewy body dementia occurs when round bodies begin growing inside of cells in the midbrain, beneath the cerebral hemispheres. Symptoms of Lewy body dementia mimic symptoms of Alzheimer's Disease and Parkinson's Disease, including confusion, loss of memory and judgment, and a shuffling gait and flexed posture.

Still other forms of dementia include:

  • Frontotemporal dementia - Affects the lobes of the brain used for judgment and social behavior. It often occurs between the ages of 40 and 65 and seems to run in families.
  • Huntington's Disease - This hereditary disease often occurs between the ages of 30 and 50. Symptoms include jerky limbs, clumsiness and muscle weakness. Dementia develops as the disease progresses.
  • Parkinson's Disease - Characterized by tremors, speech impairment and a shuffling gait. Dementia may occur late in the disease.
  • Creutzfeldt-Jakob Disease - Extremely rare in the past, but now receiving attention due to the emergence of of mad cow disease caused by human consumption of beef from contaminated cattle.

TREATABLE DEMENTIA

If you become aware of memory loss in yourself or others, it's best to be optimistic. Many mild forms of memory loss can be caused by temporary conditions such as health issues, depression, or drug interactions. The best course of action is to overcome your fear and go see a doctor. It is likely that the doctor will find a cause that you can treat such as:

  • Your reaction to a medication
  • A metabolic abnormality such as decreased thyroid function
  • A nutritional deficiency such as dehydration or a deficiency of Vitamin B-1 or B-6
  • Emotional issues such as depression and anxiety
  • Infections such as meningitis, syphilis, encephalitis or HIV

All the above are treatable and your memory can be enhanced or restored. But the important thing is to go to the doctor and get a full evaluation so you can do what's needed to recover.

10:08 am est

Sunday, December 11, 2005

Alzheimer's at Meal Time
 
According to the CNN's Health/Library (from MayoClinic.com) in an article entitled "Alzheimer's: Making Mealtimes Easier:"

Although nutrition may have little effect on how Alzheimer's disease progresses, it's important for your loved one to eat a variety of foods, particularly fruits and vegetables.

Poor nutrition can result in physical weakness, increasing the likelihood of falls and fractures. It can also reduce the efficiency of the immune system, making it less able to fight off disease and heal wounds. Malnutrition and dehydration may increase confusion and stress, and reduce your loved one's ability to cope.

"I'VE GIVEN UP COOKING."

Mom told me recently, "I have given up cooking. I've cooked for over sixty years. I'm tired of cooking. I've given it up."

At first I took this on face value. But then I thought that perhaps her Alzheimer's Disease was a factor in her giving up cooking. Cooking is a pretty detailed process: there's shopping, bringing dozens of items home, organizing them in your kitchen, reading cookbooks, following recipes, measuring out and mixing different ingredients, cooking and serving different dishes, all at the same time. Cooking is complicated. Maybe it's too complicated for Mom.

I give Mom credit for recognizing this and for devising a classy story to cover her decision to quit cooking.

IT'S JUST LIKE HOME

So if Mom has "given up cooking," how do she and dad eat?

Mom may have given up cooking, but she still makes breakfast. Each morning in her apartment, Mom makes cereal, tea, and coffee for herself and dad. She takes a lot of pride in her breakfasts. It helps her self-esteem to feel in control and serve Dad a meal each day, just as she has done throughout their marriage.

How about lunch and dinner? Mom is fortunate that her husband is the owner of D'Ignazio's Towne House Restaurant, which is only a block away from hers and dad's apartment. She and dad eat breakfast in their apartment, and they eat lunch and dinner at the Towne House.

I was talking with Mom yesterday. She said she loves going to the Towne House. "When I get to our little booth in the bar," she told me, "I feel I'm home." She should. She has been sitting in this same little booth for decades. It really is home.

It also has an added value: lots of mingling with other people. Mom gets lots of social interaction and stimulation -- so valuable for fighting her Alzheimer's -- each day at the restaurant.

She and Dad are in the spotlight the moment they sit down. Having them there regularly is valuable. They are the face of the restaurant --  its stars. The Towne House and my parents have been there together for 50 years.

Both of my parents are real characters. This can make them tough to deal with as parents. But the restaurant's customers love them. Customers show their affection by visiting my mom and dad's booth and chatting with them, teasing them, flirting with them, reminiscing, and swapping stories. It is entertaining just sitting at their booth.

FADING SENSE OF TASTE AND SMELL

It is a blessing that my mom and dad have the restaurant. Whenever I go with Mom to a different restaurant, something bad happens. She is never happy with her meals. The rest of us don't see anything wrong with the food, but it is a rare meal that meets mom's expectations.

According to the CNN Health/Library report:

The senses of taste and smell tend to diminish with age. So even healthy seniors often eat less because food doesn't smell or taste as good as it once did. Alzheimer's disease seems to inhibit eating even further.

This is true of Mom when she dines away from my dad's restaurant. Perhaps the unpredictability of food in other restaurants is what affects Mom. She orders. Her food arrives at the table. Invariably she is surprised by how it looks. She tastes it. It is either too much, or it doesn't have enough seasoning, or it has the wrong texture. There is always something wrong.

Mom gets agitated. She has a small tizzy. Then she shuts down and retreats inside herself.

This pattern repeats itself over and over.

At Dad's restaurant it's different. The servers know Mom and her quirks. They cater to Mom gently, responding quickly to her every whim. The food is always the same. The table is set the same way. The decor is the same. Nothing changes. This familiarity of routine is critical for a person with Alzheimer's. And it keeps Mom happy.

IF YOU DON'T HAVE YOUR OWN RESTAURANT

The CNN article gives lots of tips to help you make your loved one's meals more smooth and successful:

* Look for non-Alzheimer's causes for eating problems, including ill-fitting dentures; health problems such as diabetes, heart disease, or stomach problems; medications (such as pain-killers and antidepressants) that stifle a senior's appetite.

* Call your loved one at mealtimes to remind them and to walk them through a safe, healthy meal preparation.

* Store prepackaged meals in your loved one's refrigerator for easy access and "fast-food" preparation.

* Stock your loved one's cupboard with brightly covered plates and utensils. Studies show that persons with Alzheimer's eat 25 percent more when they have brightly covered dinner utensils.

* Reduce distractions at mealtimes. People with Alzheimer's are easily agitated by change and hubbub. Standardize the mealtime into a regular routine.

* Divide a meal into many little meals. For example, make breakfast into three mini-meals: a juice meal, an eggs meal, and a toast and cereal meal.

* Remind your loved one to chew and swallow carefully. Give them as much time as they need to eat. Don't rush them. (Be familiar with the Heimlich Maneuver and the new, easier guidelines for CPR.)

* Make eating physically easy. Serve meals on a nonskid surface like a wet towel or a place mat with a rubbery mesh. Switch from plates to bowls to make eating easier. Switch from a fork to a large-handled spoon.

* Concentrate on morning meals. Studies show that people with Alzheimer's are more alert and hungry in the morning.

12:12 pm est

Saturday, December 10, 2005

A Senior Moment or Caregiver's Dementia?
 
Ever since my mom was diagnosed with Alzheimer's I have kept an eye on myself. In particular, I've been scrutinizing my brain. Has it been a slacker recently? Does it lapse into ditziness and cluelessness? What is my space-cadet quotient?
 
Yesterday I talked with my cousin Dot on the phone. You'll remember that Dot has a business called Let Dot Do It! She hires herself out to do odd jobs for people, including errands, driving, and pet-sitting. Many of Dot's clients are senior citizens, including a lovable senior named Skip. If you haven't heard about Skip, just dip into a few of my recent blog articles. (For example: "Skip Stories.") Skip stories are funny ... but sad, too.
 
Skip is in the early stage of Alzheimer's Disease. What complicates things is that he is the primary caregiver for his wife who is in middle-stage or late-stage Alzheimer's. Skip is not supposed to drive, so he needs Dot as his driver so he can do errands.
 
 is past Thursday Dot arrived at Skip's to take him out for his weekly errands and doctors appointments. Skip emerged from his house and came up to Dot's side of the car. She rolled down her window.
 
"C'mon with me," he said.
 
"Where are we going, Skip?" Dot asked. She was puzzled.
 
"I'm driving today," said Skip. "C'mon! We'll use my car."
 
"I'm not sure that's a good idea, Skip," said Dot. "Why don't we just use my car?"
 
"Fine with me," said Skip. "Move over."
 
"Why?" asked Dot, puzzled.
 
"I'm driving today," said Skip.
 
It took Dot another couple of minutes to convince Skip that it was better to let her drive. She asked him why he had hired her if he was going to drive.
 
Skip got in the car. They headed out on their errands. Dot turned to Skip and said, "Are you allowed to be driving, Skip?"
 
"Not really," said Skip. "But I do it anyway. I drive up and down all the back roads out here."
 
***
 
In a Yahoo! Health Groups web posting entitled, "A Senior Moment or Caregiver's Dementia?" Lynn Sheldon tells a story that all of us "over-50s" can relate to:
 
"Ok, ok, I thought I'd give you all your chuckle for the day.

"Most of you know Spencer and I do rescue of neglected and/or abused birds, scottish terrier dogs, etc. We re-hab these critters and use them for pet therapy with our Alzheimers residents. Doing right by these animals, keeping them physically and emotionally well, keeping them well fed and simply spoiling them comes second only after the quality care of our residents. It is time consuming, but it is, in a sense, our respite time away from the sadness that is Alzheimers.

"Today I had several tasks at home to do and a few errands to run. I made my *to-do* list and set about my day. By 3 PM I still had not gotten to the bank or supermarket, so I headed out the door. Then I remembered Houdini, our rabbit, was still out *sunning* in his hutch and needed to be brought safely back inside before I left the house. With bank deposit, grocery list and car keys in hand, I rushed out the side door, grabbed Houdini, brought him in, stuck the lil guy safely inside his cage and off I went.

"An hour later upon arriving home, Spencer said to me, "Oh, isn't that cute! Houdini is in the cockatoo's cage. There he was. Sitting in this huge bird cage, just hanging out. I had even put the clasp lock on the door. Eleanor, the cockatoo sat perched up top on her play yard, cocking her head and peering down at Houdini as if to ask, "What the HECK kind of a bird is THAT, and what is he doing in MY cage?

"Spencer and I laughed ourselves silly. Houdini was nonplussed.

"Lynn (aka PatientSpirit)"
 
 
7:37 am est

Friday, December 9, 2005

Respite for Caregivers: The Four Hours Felt Like Forty!
 
I was talking with my friend Michele last night. She was telling me about the latest news from a friend named Mark who is in a coma resulting from a bike crash last summer. At first Mark was in a coma rehabilitation center, but now he is home. He has various physical therapists who come in, and many friends visit him. But his 24-7 caregiver is his mother Carol. Mark's mom has turned her back on the rest of her life and has devoted herself exclusively to her son. "If Mark recovers," said Michele, "it will be because of Carol. She is amazing."
 
Michele and her husband Saul spent the afternoon with Mark and Carol yesterday. They told Carol that they could watch Mark if Carol needed to take a break. Carol was overjoyed. She told Michele and Saul how the previous night Mark had gotten out of bed, several times, then slumped to the ground. Mark is wearing a neck brace and didn't hurt himself, but he kept getting up all night. Just getting Mark back into bed wore Carol out. She needed a break.
 
Carol left, and Michele and Saul had Mark for four hours.
 
According to Michele, Mark is like a toddler, a big, mobile, 33-year-old toddler. Mark is at level five of the 8-point Rancho Los Amigos Coma Scale. Level five is: "Confused-Inappropriate, Non-Agitated." A comatose, level-five person can be extremely mobile. For example, Mark and Michele walked around in circles in Mark's house until Michele, an athlete, was tired.

Later, after recovering from their walk, Michele danced with Mark. She pretended to do a spin, and when she came around, there was Mark, swaying his hips to the music. "It was hilarious," Michele said.
 
Since Mark has no depth perception, he doesn't know when he is about to make contact with a piece of furniture, a wall, or a window. Berfore leaving, Carol showed Michele how she lets Mark walk into the window. She makes sure he makes gentle contact. "But he has to learn," Carol reassured Michele. "It's just like with a toddler. We have to teach Mark all over again."
 
Just taking Mark to the bathroom is exhausting. During their four hours with Mark, Michele prompted Mark, over and over, to see if he needed to go to the bathroom. Often, Mark would indicate he had to go to the bathroom. Michele would set up the toilet, then turn Mark over to Saul. Several times Mark changed his mind before going.
 
When Saul and Michele left Mark's after four hours, they were exhausted. "I don't know how Carol does it," Michele said. "She does it all day and all night. Then she starts all over again the next day. And they say the recovery period for Mark's condition could be another three years."
 
CAREGIVERS DEMENTIA
 
The burden that caregivers like Carol carry is multiplied many times when we consider the huge number of people who are liable to develop Alzheimer's Disease in the coming years. As baby boomers move from middle age to become senior citizens, there will be a large increase in Alzheimer's Disease in the U.S. population. In the  next 30 years, as more baby boomer move into their 80s, more than 50% of them will come down with Alzheimer's. This will result in 16-20 million people with Alzheimer's and another 16 million to 48 million people as their caregivers.
 
According to Dan Gottlieb, on WHYY Radio's Voices in the Family:
Alzheimer's Disease is one of the most feared illnesses of our time. With baby boomers aging, it threatens large portions of our society -- those who get Alzheimer's and their families, who will most likely take care of them.
Most of the attention on Alzheimer's is being focused on the people who get the disease. But another, much bigger population that will be affected, are the Alzheimer's caregivers. As in Carol's case, Alzheimer's caregivers carrry an enormous, nonstop burden, as they watch over a family member with a crippled brain.
 
People speculate that a secondary "disease" will ripple through society, along with alzheimer's. It is being called caregivers dementia. According to David Shenk, author of The Forgetting: Alzheimer's Disease -- Portrait of an Epidemic:
The amount of stress that caregivers go through in the course of this disease is absolutely enormous. There is a study that 50% of Alzheimer's caregivers are going through clinical depression
 
... If you can imagine a disease that requires 24 hours of your day, 7 days a week, without vacations, that puts a financial strain on you, that is taking away one of the people you love most from you, that is Alzheimer's.
HOME CARE vs. INSTITUTIONAL CARE
 
When my father insisted that my mother not go into a nursing home or even a retirement community, I thought he was making a bad decision. But now I'm wondering if maybe he was right.
 
Michele has told me that her friend Mark is making huge progress in recovering from his head-on bike crash last summer, due primarily to the extraordinary care he gets from his mother. Carol's loving, personal dedication to Mark is a key factor in Mark's recovery. It is certain that Mark would not receive this level of care from anyone else in the world, even from loving friends.
 
Similary, my father is the center of my mother's universe. She and my dad have been married almost sixty years. He is an irascible, brooding, cantankerous curmudgeon. But, around my mom, he has turned into a kind of saint. When I visit them and live with them in Pennsylvania, I am astounded by the new reservoir of patience my father has developed; by the meekness he shows when he suffers my mom's verbal and emotional outbursts; by his gentle guidance of my mom toward more healthful activities and thoughts.
 
According to Betsy Arledge, producer of PBS's The Forgetting (based on David Shenk's book):
This is a film that is filled with heroes ... The patients and family members are heroes. The toll on a family member to try to take care of someone with Alzheimer's [is huge.] Most people try to keep their family member with Alzheimer's at home for as long as they possibly can. They put off a decision for nursing-home care until it's absolutely unavoidable. And that unconditional, unwavering love is one of my most moving experiences in making this film.
10:54 am est

Thursday, December 8, 2005

Skip Stories
 
My cousin Dot D'Ignazio is my age (56). She runs a business called Let Dot Do It! She takes on all sorts of odd jobs, including driving people on errands, taking them to doctor's appointments, and watering flowers and pet-sitting when people are away on vacation.
 
One of Dot's clients is a man with Alzheimer's named Skip. You will recall Skip from two of my previous blog articles -- "Are You Kidding? She's Still Driving?" and "Let Dot Do It!"
 
Dot calls me on Thursdays after her time with "her man Skip." We both get a chuckle out of her Skip stories.
 
This morning Dot called with the latest Skip story. Today is Thursday, the day Dot picks Skip up and takes him on his various errands. After driving to Skip's house, Dot went to his door, and knocked.
 
Skip opened the door.
 
"Hi, Skip," said Dot.
 
"Hi, there," said Skip. He stared at Dot. "Say," he said, "I know you. You're the one trying to get into Fair Acres. Or is it Lima Estates?"
 
[Fair Acres is a geriatric center in nearby Lima, PA. Lima Estates is a Continuing Care Retirement Community, also in Lima.]
 
Dot was surprised.  "No," she said. "I may feel like getting in sometimes, Skip. But I don't think I'm applying right now."
 
Skip shook his head doubtfully. He and Dot left to do their weekly errands together.
 
***
 
The Skip stories are illuminating because they shed light on what it is like for a caregiver to relate to a person with Alzheimer's. In general, the strategy is to go along with whatever the person says. Caregivers who work with a person suffering from Alzheimer's say that sometimes the person sees them as their husband, wife, mother, father, or one of their children. Usually a caregiver will smoothly play along and not correct the person. The person with Alzheimer's will not remember being corrected, and if we correct them we risk agitating them.
 
Also, a person with Alzheimer's often says things that are "true" to them with such force and authority that it stops the caregiver in their tracks. This is what happened to Dot.
 
So no matter what the preferred "strategy" is, the caregiver has to be prepared to be surprised and caught off balance, and must try to cope with whatever the person with Alzheimer's says to them.
 
And since Alzheimer's is a progressive disease, the person you are dealing with today may become an entirely different person next week or in another month. Somehow the caregiver has to respond to these changes and go with the flow.
 
12:17 pm est

Wednesday, December 7, 2005

If I Lose My Mind, Will I Also Lose My Heart?
 
In November 2005 Dan Gottlieb, of Voices in the Family, produced by WHYY Radio, in Philadelphia, hosted a show entitled "Alzheimer's: Losing a Mind." According to Sheldon Goldberg, President of the National Alzheimer's Association, and a guest on Dan's show, we can expect an epidemic of horrific proportions over the next few years. As our society's 78 million baby boomers age, more than 16 million of them are expected to develop Alzheimer's Disease. Already 65-70% of all residents of nursing homes have Alzheimer's. The same percentage of residents of assisted-living facilities have Alzheimer's.
 
According to another of Dan's guests, Sam Gandy, Director of the Farber Institute for Neurosciences at Thomas Jefferson University in Philadelphia, we are in for a dismal future. Within two to three decades our society will be divided into two classes: those who have Alzheimer's and those who take care of them.
 
Over 38 million Americans know someone with Alzheimer's Disease. Is it any wonder that most people assume that Alzheimer's, or some other form of dementia, is a natural part of the aging process?
 
THE SLOW EROSION OF WHO WE ARE
 
The most difficult part of Alzheimer's is the slow wearing away of a person's identity. It doesn't happen suddenly but in painfully slow steps as the gooey Amyloid protein plaques, that cause Alzheimer's, loop their way through the brain and poison its nerve cells.
 
In The Forgetting, PBS producer Betsy Arledge interviews a woman named Fran who is suffering from Alzheimer's. In the program Fran tells viewers:
I'm losing my mind but the essence of a person is their heart. I hope that as I grow older I'll still be able to laugh, and I'll still be able to hug, and I'll still know love.
Dan Gottlieb interviews Betsy Arledge on his show. She comments on the experiences that families go through as they watch family members like Fran go through Alzheimer's:
I think one of the reasons this disease is so terrifying ... is that it robs you of who you are. It takes away the very essence of your humanity: your memories, your place in society, your relationships to other people, your loved ones, your friends, your community. And because it happens slowly and insidiously and over a long period of time, it's even worse for the family to watch as their loved one just disappears before their eyes.
9:47 am est

Tuesday, December 6, 2005

Alcohol Use by Persons with Alzheimer's
 
When my mom went to the Mayo Clinic last summer the doctors said she had early stage Alzheimer's Disease. They advised her to take her medicines (Aricept and Namenda), to be active mentally and physically, and to limit alcohol use.
 
Limit alcohol use?
 
The Alzheimer's Disease Education and Referral Center (ADEAR) of the National Institute on Aging is more stark in its recommendations:
Keep all alcohol in a locked cabinet or out of reach of the person with AD [Alzheimer's Disease]. Drinking alcohol can increase confusion.
Alcohol can also cause an person suffering from Alzheimer's to become depressed. According to AgeMatters.com:

Discourage the use of alcohol, which may make the patient feel "better" for a while. After the euphoria wears off, it can trigger feelings of depression.

My mom likes to drink. Back in the 1950s and 1960s, it was the custom to drink a lot. Now Mom drinks one or two rum and cokes each day at lunch. At night she either has wine or a couple of mixed drinks. Her reaction to alcohol fits the descriptions above. She becomes animated for a short while after drinking. Then she sometimes (not always) seems to retreat inside herself. Sometimes after drinking she appears confused; sometimes depressed.

It is better that Mom not drink at all. In fact, my father has tried many times to wean Mom from alcohol. He has tried kidding her, cajoling her, teasing her, and forbidding her to drink.

Nothing works.

(So far he hasn't tried the "locked cabinet" approach.)

The flip side to drinking is that it is something Mom wants to do and that, at least briefly, gives her pleasure. She is 81 years old, she doesn't drink to excess, and what other "perks" does she have to look forward to each day?

Will the alcohol hasten the progress of Alzheimer's in Mom's brain and nervous system? Or does it give a little boost to her quality of life?

10:00 am est

Monday, December 5, 2005

Are you kidding? She's Still Driving?
 
I had lunch last Friday with Tom Wagner, a representative for the John Hancock Life Insurance Company. I met Tom at the Health Affairs Round Table in November in Raleigh, and he is interested in my company, Video Life Narrative.
 
Tom knew that I had been up to Pennsylvania to see my mom and dad recently. And he knows that Mom has Alzheimer's Disease. As we were talking I mentioned that Mom was a good driver. Tom's response was swift: "Are you kidding? She's still driving?"
 
It's true. She's still driving. (See yesterday's blog article.) Mom seems like a safe driver, but she does have Alzheimer's Disease. Tom's concern immediately heightened my worries about my mom.
 
This morning I was talking with my cousin Dot D'Ignazio. By coincidence, she is worried about a friend of hers who has Alzheimer's Disease who is trying to get his license reinstated. You'll remember Dot's friend Skip from my blog article from last week. Well it seems that right now, as I write this blog, Skip is at Riddle Memorial Hospital, in Lima, PA, taking a driving seminar so he can get his driving license back. According to cousin Dot: "I'm worried about Skip. He shouldn't be driving. Last Thursday he didn't even know what day it was."
 
Dot's anxiety did nothing to quell my worries about my mom.
 
Then I looked at the headlines of today's morning newspaper, The Raleigh News and Observer, and I really started to worry. The headline read: "Dementia Plays Role in Fatal Crash." In the accompanying article it says that C.J. Hooks, an 87-year-old farmer who lived in Smithfield, NC, outside Raleigh, was killed when he ran, head-on, into a family traveling the opposite way in their red pickup truck. Mr. Hooks was on a four-lane highway, driving the wrong way.
 
Dementia Plays Role in Fatal Crash
 
Mr. Hooks was killed instantly. The driver and passengers in the truck are in serious condition but expected to survive. Among the passengers were five-year-old twin girls and their six-year-old brother.
 
The previous night Mr. Hooks had insisted that he was waiting for an imagined ride to go pick cucumbers. During the night, while his wife Betty Hooks slept, he got in the family car, and drove from his home into Raleigh, a distance of 30 miles.
 
When police pulled his body from the wreckage at 10 AM the next morning they had no idea how long he had been driving in the wrong lane. They speculated that he was beginning the long drive west to a barn in Kentucky where he guarded freshly harvested tobacco every fall. The only problem was that he had been retired for several years.
 
According to the News & Observer:

Friends and family were still hunting for Hooks when a Smithfield police officer knocked on Betty Hooks' door.

"It's been a heavy burden," Betty Hooks said. "I did the best I could, but you can only do so much."

12:31 pm est

Sunday, December 4, 2005

Driving with Alzheimer's and Other Fuzzy Subjects
 
I'm reading Spook: Science Tackles the Afterlife, a great new book by Mary Roach, author of Stiff: The Curious Lives of Human Cadavers. Roach is an excellent science reporter, and she does her best to uncover what science has to say about life after death. However, as she travels to research sites around the globe, she discovers that sometimes the closer you get to truth, the more slippery it gets.  She writes:
The deeper you research a topic [like life after death], the harder it becomes to stand on unshifting ground. In my experience, the most staunchly held views are based on ignorance or accepted dogma, not carefully considered accumulations of facts. The more you expose the intricacies and realities of the situation, the less clear-cut things become.
The same can be said about Alzheimer's Disease. You can read about people in the abstract who suffer from Alzheimer's, but this won't tell you what will happen in the case of a particular person.

Like my mother.
 
It says in the literature that you should only prescribe Namenda (mementine) for treatment for moderate to severe Alzheimer's. My 81-year-old mother has been on Namenda for several months. Yet on most days she is able to drive, play a great game of bridge, and go shopping alone in a busy suburban community.
 
I rode with my mother recently. She drove me around town in her car. As she drove she talked -- about her life, the weather, and defects in other motorists' driving skills. She is a courteous driver, she obeys all traffic signals, and she is an ace at parallel parking.
 
On the other hand, when I went shopping with her last year, things went differently. That time we were on foot. We had walked the five blocks from her apartment on the edge of town into the small downtown shopping district. Mom has lived in her town for more than 50 years. But on this day she got lost.
 
We were in the dollar store looking for the paper towels on her shopping list, and she asked me where we were. I told her. Then she asked me what we were doing there. She had forgotten the "script" for the day that she had cooked up at her apartment, just an hour earlier.
 
After we had bought the towels, I grabbed her hand and escorted her home. It really shook me up. One moment she was breezing purposely through the store. The next moment she was like a small child with no clue what to do next.
 
So you tell me: Is my mom in early-stage Alzheimer's? Or moderate to severe Alzheimer's?
 
Maybe the answer depends on the day of the week.
 
11:37 am est

Saturday, December 3, 2005

Longevity vs. Quality of Life
 
Alzheimer's drugs don't offer a cure, but they can slow down the progress of the disease. According to an article at the online CNN Health/Library:
Alzheimer's still has no cure, but some medications can stabilize the symptoms and slow the progression of the disease. This can improve quality of life for both the person with Alzheimer's and his or her caregivers. It may even delay placement in a nursing home.
The key phrase is "quality of life." The person suffering from Alzheimer's undoubtedly has a higher quality of life for a longer period, if the drug treatment is successful. I believe my mother is in this category. She is conscientious about taking her Arricept and Namenda pills every day. She definitely has memory loss, but she still is able to do many things, including drive, socialize with friends, and play bridge. For the moment she is on a kind of "plateau." She isn't getting better, but she doesn't seem significantly worse.
 
Mom is 81 years old. Perhaps she has another ten years to live. The medications may give her and my dad (who is 88) a better quality life together for their remaining years.
 
But what about a person who has early-onset Alzheimer's? And how about their caregiver? What kind of quality of life can they expect?
 
I have written a lot about Jeff Stewart and his family, and about Tom DeBaggio and his wife Joyce. Jeff came down with Alzheimer's in his forties; Tom when he fifty-six. The drugs they have taken have prolonged their lives, with some quality of life intact. But what effect has the extension of their lives had on their wives, their primary caregivers?

In an interview that Tom and Joyce did on NPR, Joyce admitted that her quality of life suffered drastically after Tom came down with Alzheimer's. Joyce had been a practicing artist in Alexandria, Virginia, where she and Tom live. She had been forced to leave the studio where she had practiced for many years because she was no longer able to keep up her commitments and obligations to the community of artists. As Tom's personality faded and his needs increased, Joyce slipped into a deep depression. Antidepressant drugs were only partly successful. Joyce is still depressed. Meanwhile Tom's condition, ever so slowly, keeps getting worse.

Have life-extending Alzheimer's drugs helped Joyce DeBaggio?

Even the plans for committing Tom to an institution have been put on hold. The drugs have slowed the progress of the disease to the point that the moment for his switch to an Alzheimer's-care facility has become blurry and unclear. In the interview Tom and Joyce had an exchange about this. Joyce is waiting to hear from Tom that he is ready to leave her, to leave his home. Tom admitted he is ready. Perhaps this what Joyce needed to hear. But she isn't sure.

My wife has a friend who has a Down Syndrome child born without an esophagus. Thanks to medical technology her child has survived for fourteen years. But the cost to her and her single mother has been horrific, including dozens of major surgeries, millions of dollars in medical costs, financial bankruptcy, and years of unrelenting stress, roller-coaster mood swings, and anguish.

Have these medical advances improved the quality of life for these two people?

We have another friend who is 35 years old. Her mother has early-onset Alzheimer's Disease. She has had it for almost ten years. Yet, even now, she is only sixty-four.

This morning my wife Janet and I were discussing our two friends and the terrible caregiving responsibilities they wrestle with every day.

"Look at how much you worry about your mother," Janet said. "But she came down with Alzheimer's when she was in her late 70s and early 80s. Your family and your dad have to look after your mother. But, on the outside, she may have another ten years to live.

"That doesn't even begin to compare with our other two friends. They face being caregivers for decades to come. Medical miracles can prolong people's lives but they also stretch out caregiving into a faraway future. For our poor friends, there is no break, no relief, in sight. Their whole lives have been affected.

"Without the medical advances caregivers might have faced a relatively swift death for their loved one. The loss would have been painful for them. But it would have occurred quickly. They could have moved on with their lives.

"But that's not possible now. Now many caregivers are stuck in a kind of quicksand as they worry over their loved one who never gets better but who doesn't die either.

"Where is the quality of life in this picture?"

9:51 am est

Friday, December 2, 2005

Let Dot Do It!
 
My cousin Dot has started a business called "Let Dot Do It." She accepts any kind of work people need. She does errands, takes people to the doctor's, buys groceries, and looks after people's plants and pets while they are on vacation.
 
Many of Dot's customers are senior citizens. Some of these folks have Alzheimer's Disease and other forms of dementia. This requires Dot to exercise special care. But it also results in some humorous incidents involving Dot and her clients. Dot called me tonight and told me about an incident that occurred earlier this week.
 
Dot: I have a customer Skip who has Alzheimer's. I call Skip a lot to make sure we are on the same page about things he wants done. I was supposed to pick Skip up Thursday morning, so I called him up Wednesday night to tell him I had a funeral to go to on Thursday morning, so I'd pick him up early. Skip said fine. Skip is a retired Navy officer, so I call him "Commodore." He calls me "Midshipman." When we signed off on Wednesday night, he said, "Aye, Aye, Midshipman."
 
On Thursday morning I arrived at Skip's house at 8 AM. There were no lights on. I knocked at the door. After awhile Skip appeared at the door, disheveled and surprised to see me.
 
Skip: Hi, Midshipman! What are you doing here. It's Wednesday.
 
(When people with Alzheimer's say something, it may be completely untrue. But they say it with authority.)
 
Dot: I don't think so, Commodore. (But Skip was so sure, I became confused. After all, I had a car accident, and my brain isn't what it used to be.)
 
Skip: I'll go get the paper. That'll tell us what day it is.
 
Skip walks up the steep driveway to the road to get the newspaper. He gets the newspaper, looks at it, then walks down the hill. He sees that the day is Thursday, but on the way down the driveway he forgets again. He gets back to the house and spots Dot.
 
Skip: Oh! It's you, Midshipman. Good to see you! Come on in and I'll make us a cup of coffee.
 
Dot: Skip, what day is it? I really have to go. I have a funeral ...
 
Skip: Oh, yes ... (looking again at the newspaper). Ahhh ... It is Thursday! It says so right here.
 
Dot: So I said good-bye to Skip and drove away to my funeral. And that's how Skip and I started our day.
 
6:43 pm est

Thursday, December 1, 2005

Mom's Life After Ginny
 
Ginny Alyanakian died on Thanksgiving evening, just five days ago. Ginny was my mom's oldest and dearest friend. At this moment my mom and dad are in Christ Church in Media, PA, attending Ginny's funeral service.
 
What effect will Ginny's passing have on Mom?
 
Ginny's husband Charlie (see his picture in my blog) died six years ago, in 1999. Ginny's health has been deteriorating ever since Charlie died. Her emphysema was so bad that when I saw her last week, she had a huge umbilical cord of Oxygen tubes draped around her body, and twisting and winding down the front steps of her house to the Oxygen tank on the first floor. But it was her heart that failed on Thanksgiving evening.
 
Ginny's failing health was a tragedy. But, ironically, it had a healthy effect on my mom. Her concern for Ginny kept Mom connected to Ginny and to the world outside herself. (See yesterday's blog about the healthful effects of concern for others.) Mom called Ginny every day. Every couple of days Mom visited Ginny -- at home or in the hospital. Mom forgot a lot of things. But she never forgot about Ginny.
 
Now Ginny is gone.
 
 
11:24 am est


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