Tuesday, January 31, 2006
Man Suffering From Alzheimer's Disease Reported Missing In Vance County
For my Raleigh-area readers, please read the following:
POSTED at
WRAL.COM: 11:38 am EST January 31, 2006
VANCE COUNTY, N.C. -- Authorities need your help to find a person
who has been diagnosed with Alzheimer's disease.
Arthur Johnson, 77, was last seen at around 4:20 p.m. Monday at Jefferson's Store on Rock Spring Church
Road in Vance County.
Johnson was last seen wearing a plaid brown shirt, blue Dickies work pants, Timberland boots and a tan-colored
Ford baseball-type cap.
Johnson currently resides in Clarksville, Va. If you have any information about Johnson's whereabouts,
you are asked to contact the Mecklenburg County (Va.,) Sheriff's Office at (888) 624-2207.
Monday, January 30, 2006
In Memory of Jeff Stewart, 1956 - 2006
Last week my friend Jeff Stewart died. Jeff had early-onset Alzheimer's disease. I wrote about Jeff and his
family in my blog last November in an article entitled
Early-Onset Alzheimer's Disease.
I didn't know Jeff well, but I was deeply saddened by his passing. I know Jeff's best friend, Scott Rose, and in
recent weeks I have watched Scott suffering along with Jeff.
Jeff passed away on Tuesday, January 24th around 4:30 PM at the Black Mountain Center, a residential facility in Western
North Carolina that specializes in Alzheimer's treatment.
Jeffery
Allan Stewart, 49, of Cary
entered into eternal rest on January 24, 2006 after a lengthy illness.
Born September 1, 1956 in Washington D.C.,
Jeff grew up and lived most of his life in Fairfax Station and Herndon, Virginia
and graduated in 1980 from Bluefield College,
receiving the Algernon Sydney Sullivan Award.
He received his Master's degree from Strayer
College in 1999 and then moved to Cary
with Judy, his wife of 21 years and daughters MacKenzie and Jenna. Jeff was an active participant in the YMCA Indian Princesses
with his daughter and was active in several Bible studies as a member of Apex United
Methodist Church.
Jeff is the son of Allan
and the late, Julie Stewart of South Riding, VA.
He was predeceased by a son, Bryce Allan and is survived, in addition
to his wife, and daughters; a brother, Craig of Alexandria, VA; two sisters, Laurel of Hemet, CA, Kathy of Boston, VA; many
nieces; nephews; aunts; uncles; family and friends.
He was in the banking industry for 33 years recently employed by
the Coastal Federal Credit Union in Raleigh.
Memorial Service celebrating
Jeff's life will be held 2 p.m. Saturday,
January 28, 2006 at Apex United Methodist
Church with the family receiving guests after the service.
Memorials may
be made to Alzheimer's Society of Eastern N.C. in Raleigh, NC.
My wife Janet and I attended Jeff's memorial service on Saturday at Apex United Methodist Church. It was a beautiful
ceremony. Jeff's daughter Jenna played the recorder and his daughter MacKenzie read a poem dedicated to her father. Scott
told stories about Jeff as a slide show played overhead. And Jeff's wife Judy thanked everyone for the huge support they've
given the family over the last several years.
I'm glad Jeff is finally at rest and that he has gone on to meet God. But I am also very sad. After all, he was only
49 years old.
Wednesday, January 25, 2006
Incoming!
My parents made it to North Carolina!
My brother Owsley drove my parents all the way from Philadelphia.
I talked with Owsley on our cell phones all day long. I guided him over the final treacherous miles on his way from to
our home in Apex, North Carolina. There were no mishaps and my brother, his dog Andy, our family friend John Tercha,
a boat, a trailer and, yes!, my two parents, arrived safe and sound around 6:30 this evening.
It was a crazy evening! My daughter Laura needed to be picked up at the Raleigh Charter School open house at 8 PM just
as we were going to dinner with my brother, John Tercha, Andy the dog, and my parents. So we decided on 42nd St Oyster Bar
for dinner. (42nd Street is near Laura's school.) We went to Laura's school and she was nowhere to be found. We finally
connected. I took my parents to the Oyster Bar. I took Laura to Cameron Village Library, ran back, had dinner with my parents,
picked up Laura at her friend Mary's house, and we all returned home. Now my brother's very large dog is chasing our cat around
the house (disassembling lamps among other things) and dueling, nose to beak, with our pet macaw. It's way past midnight and
no one shows any signs of slowing down.
More later ...
Monday, January 23, 2006
Life Care Communities -- Reality vs. Stereotype
My mother-in-law Doris Letts is one of the loyal readers of my blog. Two weeks ago Doris and I had a great conversation
about the blog and about seniors and caregiving. Doris knows that my dad is prejudiced against retirement communities.
Dad has told me that Mom will go into a retirement community only over his dead body. Dad's decision to keep out of a retirement
community is a constant theme in my blogs. For one example, see "
An Institution or a Private Caregiver?" (10/26/06)
Doris has spent the last three years at Lima Estates in Media, Pennsylvania. Lima Estates is a life care community. After
our conversation Doris wrote me the following email:
Hi, Fred,
A lot of people do not understand a Life Care community. It is not an assisted living place. Lima Estates is like living in a hotel
- you pick the size of apartment - studio, 1-2-3 bedrooms. If you are in good health, you can go to Florida for
the winter, take short trips - do whatever you choose. The majority of the residents have cars so they can visit relatives, etc.
- whatever their life was before, without the maintenance of a home.
The big advantage for Life Care places
is that when you need help in caring for yourself , the Assisted Living facility is here, as is hospital care. Like I said, it is the insurance that
even if I need care, my fee will not go up.
Nursing homes and assisted places are very expensive and they are very confining. If your Uncle Jack is in good
health and just needs meals provided and friends to communicate with, check out life
care communities,
There have been several marriages here at Lima. One day, shortly after moving in, I was in the laundry room and
a man was doing laundry. I made the comment that it was nice of him and he said he only did his own. I told
[my husband] Bill that it was a rule here that the guys do their own laundry.
Oh well, I tried!
It used to be that a person had to be able to walk in unassisted into life care facilities in order to qualify for admission. Then the government got into it,
and said that was discriminatory so they passed a law. Now people wait too long and don't get the advantage of the community
before they go into assisted living. Plus the fact that since it is fairly expensive, they don't get the plus part of
this kind of living.
I am so glad to be here (and I know the family is, too). I don't have to shop for food, drag it home, cook it, clean
up after and be stuck in that condo where most of the people went out to work. The residents here are all very
nice, and we all take part in what goes on. Last year two women from my building took a bus trip to Mackinac Island
- they loved it!. My bag is more going in to New York to see a play or Atlantic City to the casinos.
The staff here likes to keep us oldsters busy and happy.
I got that Christmas Kangaroo for Sarah on a trip to the Pennsylvania Dutch country.
I'm running out of room here.....Love, MIL*
*Mother-in-Law!
Friday, January 20, 2006
Untangling the Origins of Alzheimer's (Part Two)
Yesterday we talked about how free radicals can play a role in causing Alzheimer's Disease. Free radicals are not the
only culprits in causing Alzheimer's Disease. Free radicals can be harmful to the brain, but they have evolved as part
of the body's chemistry over millions of years. They also play a necessary role in many of the body's basic functions.
The body needs free radicals but it needs to keep them in check. The key is balance. When free radicals accumulate in
the brain they oxidize brain neurons. This leads to an increase in brain proteins that normally carry brain messages and help
preserve memory. These proteins do not play a healthy role in the brain but instead wedge together in the hippocampus and
the cortex and form clumps.
Scientists at Case Western Reserve University in Cleveland, Ohio, have just published a
study this week that shows that the first step in this process may be when something in the brain tells brain neurons to start
dividing. In a process known as
cell cycling, the brain cells start to divide. However, since they are not supposed
to divide, they become stuck and begin to die. This is an important study because brain cells are not supposed to divide,
and they are not supposed to die. In a healthy person, brain cells can live for 100 years or more. A certain number of
new brain cells can be created, even later in life, but, for the most part, you must make do with the brain cells you are
born with.
Dying brain cells are like the proverbial snowball at the top of the hill. The momentum builds as more and more cells
start dividing ... and dying. From one to six months after they die, a new protein appears known as APP -- Amyloid Precursor
Protein. It may be stimulated by a gene known as APOE (apolipoprotein). This gene comes in many variations. Variation #4 of
APOE is associated with 60% of the cases of normal (late-onset) Alzheimer's Disease. It is the only risk-factor gene identified
that could cause Alzheimer's Disease. Since it is a dominant gene it can show its effect even when inherited from only one
parent.
The APP protein begins forming Beta-Amyloid, a protein fragment. Tiny molecules of Beta-Amyloid accumulate gradually
into a plaque known as Amyloid plaque, a gluey, wax-like substance.
The picture above shows a plaque found in the brain of a person with Alzheimer's. In this picture the plaque
is stained green. Surrounding it are the tiny neuron tangles that also characterize Alzheimer's Disease. These tangles, made
mostly of protein like the plaque, are stained in red and blue. The protein in plaques is mostly Beta-Amyloid; the protein
in tangles is known as tau.
MIDDLE-STAGE AND LATE-STAGE ALZHEIMER'S
Cell death accelerates in the brain of a person with Alzheimer's as plaques and tangles accumulate. In early-stage Alzheimer's
the plaques and tangles primarily affect the hippocampus. This causes the tell-tale loss of short-term memory.
As the disease progresses it expands into the cerebral cortex, the part of the brain that enables us to think, use language,
make decisions, and control our instincts and emotions.
This diagram shows a normal person's brain on the left and the brain of a person with Alzheimer's on the right.
As you can see in the diagram, the brain of the person with Alzheimer's has shrunken sections and large indentations where
brain cells have died. As the brain is attacked, it can no longer control crucial functions. According to the
Alzheimer's Association:
Alzheimer's disease disrupts each of the three processes that keep neurons healthy: communication, metabolism,
and repair. This disruption causes certain nerve cells in the brain to stop working, lose connections with other nerve cells,
and finally, die. The destruction and death of nerve cells causes the memory failure, personality changes, problems in carrying
out daily activities, and other features of the disease.
In the last stages of Alzheimer's (which may occur anywhere from eight to twenty years after the onset
of the disease), a person may lose control of their bowels and bladder, their ability to stand and walk, their ability to
swallow and breathe. One of the most difficult parts of Alzheimer's is that this phase often can last for many years.
Thursday, January 19, 2006
Untangling the Origins of Alzheimer's Disease
Readers of this blog know that my mother, Libby D'Ignazio, has Alzheimer's Disease. This blog is partly a diary of my
experiences and observations as Libby's son. But it is also a look at Alzheimer's Disease itself -- where it comes from, who
gets it, and how to cope with it. As yet, there is no cure. Once you've got it, it doesn't go away. All you can do, hopefully,
is slow it down.
THE BASICS -- WHERE DOES ALZHEIMER'S STRIKE?
Alzheimer's is a brain disease. But the brain is a pretty big place, filled with billions of neurons. What part of the
brain does Alzheimer's strike?
Alzheimer's strikes the cerebral cortex, the part of the brain that enables us to think and make decisions. It also strikes
the hippocampus. Humans actually have two hippocampi -- one on the left side of the brain, and one on the right.
The hippocampus' curved shape resembles a sea horse. "Sea horse" in Greek is hippocampus.
Each hippocampus sits inside a temporal lobe of the brain. The function of the hippocampus is to translate short-term
memories into long-term memories.
The hippocampus is part of the limbic system. According to
Wikipedia:
The
limbic system (
Latin limbus: "arc") is the collective name for structures in the
human brain involved in
emotion, motivation, and emotional association with
memory. ... The limbic system plays its role in the formation of memory by integrating emotional states with stored memories
of physical sensations.
A KEY SYMPTOM OF ALZHEIMER'S -- PROTEIN PLAQUES
Alzheimer's Disease is a form of dementia. a brain disorder that prevents a person from carrying out their daily
tasks. Dementias can strike different parts of the brain. Alzheimer's strikes the hippocampus.
There are many markers, or clues, that a person has Alzheimer's Disease. Usually the final determination of Alzheimer's
can only be made after a person's death if an autopsy is performed. Four consistent markers for Alzheimer's are found in the
hippocampus:
-
Amyloid plaques -- waxy protein clumps
-
Neurofibrillary tangles -- twisted threads of dead nerve cells
-
Disrupted connections between nerve cells that store memories
-
Lower levels of brain chemicals that carry nerve messages
PROTEIN & ITS ROLE IN ALZHEIMER'S
The average adult human brain weighs around three pounds. A newborn baby's brain weighs about 3/4 of a pound. The brain
and its 100 billion neurons are mostly made up of fat. But the brain's long spidery neurons communicate using protein.
Proteins in hormones and enzymes are the core chemicals for communication within the brain and for the brain's ability to
remember.
After water, protein makes up most of the weight of a human body. Our muscles, organs, nails, hair, and ligaments are all
made of protein. Hormones and enzymes that create chemical changes in our bodies and control all bodily processes are made
of protein.
Alzheimer's Disease doesn't have a single point of origin. At the macro or real-world level, there are many suspected
causes of Alzheimer's Disease, including heredity (genes), a polluted environment, stress, poor diet, lack of exercise, aging,
reduced mental activity, isolation, etc.
But at the micro or brain level, it all comes down to protein. What causes a brain to lose control of its protein?
THE BAD GUYS -- FREE RADICALS
Many scientists think the culprit is free radicals. A free radical is a molecule or atom that is unstable
and lacks an electron. A free radical is highly reactive. When it is around another molecule, such as a nerve cell in your
brain, the first thing it does is steal an electron from the brain cell. But that creates a new free radical. And that free
radical turns around and steals the electron from another brain cell. A chain reaction is created as healthy brain cells are
consumed and replaced by non-functioning brain cells.
This process is known as oxidation. Healthy cells oxidize: the tissue that they make up becomes unstable and breaks
apart.
In the popular press, free radicals are portrayed as tough, rowdy street gangs that roam through our bodies "rusting" and
destroying valuable brain cells, artery cells, and organ cells. They are the primary culprits for cancer, heart disease,
Alzheimer's, and aging itself.
Hence the popularity of antioxidants such as Vitamin E, Vitamin C, beta carotene and Selenium. Antioxidants are
the good guys, the white hats. These free-radical scavengers attack the free radicals, give them back their electron, and
render them harmless and neutral.
STAY TUNED.
Tomorrow I'll wrap up this story by showing how proteins are at the heart of Alzheimer's Disease.
Stay tuned.
Wednesday, January 18, 2006
Today Dad Is Having His Corduroy Artery Checked.
Talking with my parents is such a roller coaster. I try to call them every day, but it's never the same. It's like having
twelve parents instead of two. I never know which of those twelve parents will answer the phone. Some days they answer the
phone all bright and chipper. The next day my mom answers the phone and angrily shouts "HELLO! WHO IS IT?!" Even way down
here in North Carolina I flinch. I feel like a little boy and I've just done something wrong.
I know everyone has moods. So it's no big thing. But it keeps a me a bit off balance, just the same.
Today Dad anwered the phone. I said, "Hello, Dad, it's Fred."
Dad replied: "Fred, who?"
This has been Dad's way of greeting me ever since I left home forty years ago.
Once we got past greetings, Dad said that he had a doctor's appointment.
"What for?" I asked.
"They're going to look at my corduroy artery," he replied.
"Your corduroy artery, Dad?" I asked.
"Yep," he said. "They want to see if I'm getting enough blood and Oxygen to my brain. "Personally I wish they'd done
this twenty years ago. I asked them where were you when I needed you."
CORDUROY, MO-GATING, AND OTHER BABE-ISMS
Of course Dad meant they were going to check his carotid artery. I'm used to Dad making up words as he goes
along. He's been doing this for as long as I can remember.
When I was a kid, Dad used to give toasts at the big dinner table in our family dining room. We had the four kids and
my two parents. Often we'd have half a dozen guests joining the family at the table. Dad would prepare everyone's plate, then
before we were allowed to eat he would give a toast -- a long toast. It was always filled with big, multi-syllable words.
It was quite impressive. It took my going to college before I realized that many of my father's words were made-up or altered
for dramatic effect.
One word we learned from Dad was mo-gating. Mo-gating is not just a word; it's also a way of living your life.
It's a complex word. It means being chilled and not letting things bother you. But it also means weaving your way through
daily chores in an intentional and efficient way.
Mo-gating can also mean getting lost. It is what happens every time we look for Dad at a family dinner or an important
family event. When Dad doesn't show up someone will always say, knowingly, "Don't worry about Dad. He's just mo-gating."
Dad's skill at mo-gating is nothing short of incredible. You might be talking with Dad at his restaurant. You turn your
head to talk briefly with someone else. You look back at Dad, and he's vanished!
Not to worry.
He's just mo-gating.
Tuesday, January 17, 2006
He's a Happy Man
This week my brother Owsley drives my parents on their annual hiatus from the dark, cold days of Pennsylvania to the
balmy, sun-drenched Florida keys.
Janet and I hope that they will pass through North Carolina and spend a day or two with us on the trip south. But with
my folks and Owsley, you never know.
One year they decided to head west to Kentucky to visit my mom's brother Jack. Another year they went far to the east
so they could eat a seafood dinner in South Carolina. The year they came through Raleigh, we were waiting for them, along
with our two-year-old Macaw Neko. Owsley was fascinated by Neko and spent his entire visit teaching Neko how to say "cigar."
It was remarkable! Over and over, dozens of times, Owsley went up close to Neko's cage and patiently whispered, "SEE-gar
... SEE-gar ... SEE-gar."
To which Neko replied, "Cracker!"
The trips to Florida are legendary in our family. Mostly Owsley just hangs on for the ride. He is the driver, but he
is not in control. In times gone by, in the back seat he had my parents' beloved Weimeraner, Soda. Soda was a noble, dignified
dog and a good car traveler, almost to the end. When she got very old, she became incontinent. To prepare for the trips
Owsley had to set up a "pampers" arrangement on the back seat to protect the leather from Soda's involuntary lapses in bathroom
etiquette.
Meanwhile, he had Mom who was, then as now, eager to go, go, go. "Are we there yet?" is supposed to have come out of
the mouth of a four-year-old eager to be done with a long car trip. But it just as easily could have been said by Mom. Mom's
idea of traveling is let the pedal hit the metal and drive like the blazes till you get there.
Which couldn't be more different than my Dad's approach. You see, my Dad has reached the point in his life when he'd
like to do a little sightseeing. He reads National Geographic magazine and he would like to see some of the faraway places
where his life hasn't previously carried him.
My dad is about meandering.
And, in the middle, is Owsley. Except he really isn't in the middle. He's in the driver's seat. And as he nervously glances
over his shoulder to see if Soda's back seat is still dry, he hears Mom ask, "Where are we now? When will we get there?" "There"
being a magical place in my mother's mind, considering the fact that it is a two- or three-day trip to Florida, and "there"
might be the next tiny motel off Highway I-95 where Owsley and my Dad see if they can smuggle Soda into a room behind the
watchful eyes of the clerk at the motel's front desk.
And there's Dad. Dad is chewing on a cigar. He is smiling. He's noticed the chaos around him, and he's detached himself
from it. For the moment, the arthritis that cripples his body is forgotten. His weak heart is actually singing. He's moving
at 65, 70, 75 miles per hour. The open road lies before him. He's seeing the world. My dad is a happy man.
Monday, January 16, 2006
Kind Caregivers for Young and Old
I had an experience the other day that touched my heart. I had a chance to watch very young people, just starting out
their lives, and very old people, finishing out their lives. I saw them both in the space of a couple hours. For me, it was
unique. Normally I associate with adults, people younger than me, people older, but pretty much all the same. Normally I don't
hang out with the extremes: The very young, the very old. So it caught my attention. And what I noticed was their similarities.
What they both had in common were caregivers. They both had people around them who looked after them -- shepherded them
-- in a kind and gentle manner.
I started my day by visiting Pine Tree Villa--an assisted-living facility in North Raleigh. The director of admissions,
Gray McKay, took me on a tour of all three floors of the facility. Gray knew all the residents at the facility and greeted
them warmly as we went on our tour. I said hello to all the members of the staff and watched as they took care of the residents
in a personable and respectful manner.
After visiting Pine Tree Villa I traveled from Raleigh to Cary to go swimming at the Cary YMCA. I was still thinking
of all the very old seniors that I had visited at Pine Tree Villa, when suddenly the locker room at the pool flew open and
a horde of young people burst into the room, yelling, laughing and chasing each other. Their caregiver, a young man
in his twenties, followed them. He chatted easily with them, joked with them, and did his best to get them to change out of
their swim suits back into their street clothes. He was very effective, but he never had to threaten anyone or raise his voice.
The horde of boys sat on the floor in the locker room putting on shoes and socks, racing in and out of the shower, rubbing
their bodies with towels. Then suddenly they flew out the front door, and they and their caregiver were gone. Once again the
locker room was quiet: Just us boring middle-aged folks brushing our teeth and putting on our swim trunks.
As soon as the boys left it hit me that my two experiences that morning were similar under the surface. The boys
moved at double-time and triple-time. They were loud, raucous, playful like lion cubs rolling and flying around the room.
The seniors, on the other hand, were quiet and moved in slow motion. But in both cases I noticed that everyone seemed comfortable
and at ease. There was no tension in the air, no despair, no sense of stifling or repression. This good, healthy atmosphere
I attribute to the caregivers.
I noticed people at the end of their lives and at the beginning of their lives. They were very different, yet all the
same. They were just people. And they all seemed to thrive under careful yet gentle and loving shepherds who did the most
important thing of all: they let them be themselves.
Friday, January 13, 2006
A Webwork of Disbelief
Over the last two years my attitude toward my mother has changed in startling ways. Two years ago I heard reports from
my sister and my two brothers that Mom was going downhill. Every time I talked with them they told me a new story about something
Mom had done. It almost always involved memory loss, and it was clear my siblings were worried.
I didn't see much of Mom, but I visited her and Dad a couple times a year. I did see Mom acting and thinking a little
slower. But what could people expect. Mom was almost 80 years old!
I shared my opinion with my wife and children. We all agreed that the family was over-reacting to mom's natural aging.
Maybe it was because they saw her every day. Maybe they were just too close.
The turning point in my own attitude occurred last summer. My dad and my brother Owsley took Mom to the Mayo Clinic
in Minnesota. The doctors at Mayo ran tests over several days. The good news was that Mom didn't have any underlying health
problems. The bad news was she had early Alzheimer's.
If Mayo thought Mom had Alzheimer's, I guess she had Alzheimers. My attitude made a sharp about-face. But the real change
occurred later in the summer. I was down at the seashore with Mom, Dad and Owsley. We were talking about Mom, and suddenly
Dad turned to me and with a look of burning intensity he said, "Freddie, you don't get it. You just don't get it."
I was shocked by his fierce, pained look. "Get what?" I asked. "I don't know what you're talking about."
"I'm talking about your mother, your dear mother," he said, his voice rising. "She is losing her memory. A year from
now she won't even recognize you. She may not even recognize me."
That did it. He got my attention.
Ever since that night I've had a different attitude. And I've tried to be around Mom a lot more. With more exposure I
started to see what my brothers, my sister and my father had been seeing all along. My mom was losing her memory. She was
going downhill.
One day, in particular, shocked me. Mom and I were shopping in Media, her hometown for 55 years. We were inside
a store, and suddenly Mom looked at me. She asked me where she was. I told her. She asked me what we were doing there. I told
her what she had just said she'd needed to buy.
We completed our purchase and we walked home. Mom seemed fine again, but I was shaken. I didn't really need to do it,
but I held her arm and steered her all the way home. My old beliefs about my Mom's self-sufficiency and her being okay on
her own were shattered. A new, very different future suddenly revealed itself to me.
THE INERTIA OF OLD IMAGES
I was talking with Marcia Petterson at the Cary YMCA yesterday. I told her about this blog, and I talked about my mother.
Marcia surprised me by telling me that her Mom had had Alzheimer's too, just like my Mom. In fact, Alzheimer's killed her
Mom. The disease gradually took away her brain functions until, three years ago, she couldn't even swallow. Shortly after
that she died.
I asked Marcia how long her Mom had Alzheimer's before passing. Marcia said that her mom was diagnosed with Alzheimer's in
1998, but Marcia suspected her mom had it several years before that. But it was in its early stages and people wrote off her
mom's memory lapses as "just old age."
"The worst thing," said Marcia, "is other people's attitudes. My brother wouldn't listen to us about my mom. We kept
telling him something was not right, but he refused to believe it. He thought we were overreacting."
I told Marcia about my experiences with my own mother. I told her that I had discounted my brothers' and sister's worries
for a period of years. "I think that it was because I hadn't spent enough time with her," I said. "When I called Mom on the
phone she sounded absolutely normal. But now I know that she had developed a remarkable ability to 'hide' her condition. She
always talked about the present and the weather. And she got off the phone as quickly as possible."
Marcia nodded her head. "People take a lifetime to form their impressions of other people. When those people begin to
act different, they deny what they see with their own eyes. All they see is the person they've known and loved their whole
lives. It's hard to convince them that their friend or family member is melting away, little by little.
"Nancy Reagan calls Alzheimer's Disease 'The Long Good-Bye.' It is good-bye, but in my opinion it is way too long. The
person with Alzheimer's is oblivious to their condition. But everyone else who is on their wavelength is watching the person
they love slowly disappear. It is very painful."
Thursday, January 12, 2006
Safe Return for the Wanderer
A couple days ago I talked with my good friend Rosie Parmigiani of Bristol, PA. Rosie and I both have mothers with Alzheimer's.
(For a contrast between Rosie's mom and my mom, see my Wednesday, January 11, 2005, blog
article.)
While we were talking Rosie asked, "Do you have safe return for your mom?"
I had never heard of it. "What's that?" I asked.
"We have it for my mom," Rosie replied. "She doesn't wander, but it sounds like you really need it for your mom--for
the future."
- The caregiver and the person with Alzheimer's both get a bracelet or a necklace that they always wear.
- The caregiver's medallion says, "I am a caregiver for.." and then gives the name of the person with Alzheimer's. It also
lists the phone number of a dispatcher to call to alert contacts that the caregiver is disabled and someone else must provide
care.
-
The Alzheimer person's medallion says, "I am memory impaired." It, too, lists the dispatcher number so that
the caregiver and other contacts can be notified that the Alzheimer person has been found.
Safe Return is a national service. You can sign up by:
Alzheimer's Association
National Office
225 N. Michigan Ave., Fl. 17
Chicago, IL 60601-7633
With a $40 enrollment in Alzheimer's Association Safe Return, you receive the following products:
-
Engraved identification bracelet or necklace and iron-on clothing labels.
-
Caregiver checklist, key chain, lapel pin, refrigerator magnet, stickers and wallet cards.
-
For an additional $5, you'll receive caregiver jewelry. In an emergency, it alerts others that you provide care for a person
enrolled in Safe Return.
When you enroll you will be need to provide the following information:
-
The name of the person with Alzheimer's and their contact information
-
Their identifying characteristics (height, weight, eye color, distinguishing marks and characteristics, etc.)
-
Their EXACT wrist measurement in inches (required when ordering a bracelet)
-
Up to three contact names, addresses and phone numbers (more can be added, if necessary)
-
Local law enforcement information (address, phone and fax numbers)
My brother Tim and I investigated the idea of getting an ID bracelet for Mom and Dad. It would have personal medical information
on it (including their medications). The Safe Return bracelets seem like a good alternative. Or maybe we could get our parents
to wear both sets of bracelets.
In either case, we will choose the $45 option so that we get a bracelet for my Dad to wear. He is my Mom's primary caregiver
and his health is fragile. It is possible that he could suffer a stroke or be disabled suddenly and not be able to return
to my Mom. So they both need bracelets.
I will check with my family to see what they think.
Wednesday, January 11, 2006
Rosie's Mom vs. Freddie's Mom
Yesterday I called my friend Rosie Parmigiani in Bristol, PA, to wish her Happy Birthday. I was a day late but Rosie
forgave me.
We got into a discussion about our mothers, both of whom have Alzheimer's Disease. My mom lives with my dad in Media,
PA. Rosie's mom lives with her in Bristol.
Rosie told me that they took her mom with them to visit Rosie's sister in Pittsburgh for the holidays. "Mom was one big
hive," Rosie said ruefully. "The moment she got to Pittsburgh she broke out in hives. They went away. Then they came back
again."
"What caused them?" I asked.
"The doctors said that it was from stress," said Rosie. "Just the stress of traveling and visiting a new place. She's
stayed with my sister before. But for a person with Alzheimer's that past experience is completely wiped out."
I remembered that Rosie and her sister shared caregiving for her mother. I asked what she planned to do.
"My sister says she's coming here," said Rosie. "Whenever I'm out of town, then she'll move into my house with mom. It's
a lot better than having Mom go to Pittsburgh and get hives."
WHAT MAKES A PERSON WANDER
Rosie leaves her mom to look after herself at home when Rosie leaves for work. I asked Rosie if her mom, like many persons
with Alzheimer's, had ever wandered.
"She's never wandered," said Rosie. "It's because she has no history of going anywhere. She never got her driver's license.
She didn't travel. She pretty much stayed at home."
Many experts think that people with Alzheimer's wander because they are repeating earlier behavior when they had jobs
or needed to travel around a community. The Alzheimer's person is mimicking their early behavior without real purpose or awareness
of their current actions. Their memory is impaired so they are unable to adhere to their earlier routes, and they become disoriented
and lost. (For a tragic example of this behavior, see my blog article, "
Are You Kidding? She's still driving?" from December 5, 2005.)
Rosie's observations about her mom made me think of my mom. Rosie's mom and my mom are exact opposites. Rosie's mom didn't
travel, so now she doesn't wander. But my mom is the "errand queen." She has a driver's license and she knows how to use it.
In addition, my mom is the proud resident of four houses--four houses! She and my dad have put their assets
into houses, and they live in all of them: one in Media, PA; a house in Avalon, New Jersey; a farm in Oxford, PA; and a condo
in Key Largo, Florida. In any given week in the summer my mom might live in three out of her four houses.
They're not close together; they're all far apart. They require lots of driving to get to them. Mom still drives.
"Uh-oh," I said.
"What's the matter?" said Rosie.
I told her.
"Whoa," said Rosie. "The good news is that your mom will probably not break out in hives when she travels. The bad news
is you'd better keep an eye on her. If she ever starts to wander, it could be big time."
Tuesday, January 10, 2006
Roller Coaster Days
"Hanging out with Mom is like riding a roller coaster." That's the report from my sister Lisa.
Lisa called me last night after a long day with Mom. Dad was gone all day at doctors' appointments, so Lisa spent the
day with Mom. They sorted through Mom's old clothes. They went on errands together. They got their nails done together at
the spa. And they had lunch together at Dad's restaurant, The Towne House. Last night, Mom, Dad and my brother Owsley came
up to the Towne House together for dinner. Lisa works at the Towne House each afternoon and evening, so she was there to look
after them at the restaurant.
It was a full day--for Mom and for Lisa.
"It was an exhausting day," Lisa told me last night. "Mom has her good days and her bad days. This was definitely not
one of her good days."
Alzheimer's Disease (at least in Mom's case) is not a constant thing. Some days Mom shows almost no memory loss and seems
to be normal. Other days she is totally different. She may not notice any difference, but Dad, her children and her friends
notice a big difference.
If you see Mom on a given day you might think she is fine. However, if you spend enough time with Mom you notice
that her condition varies all over the map. And she is gradually getting worse.
Monday, January 9, 2006
A Peek-A-Boo Gift Card for Seniors
I talked with my cousin Jack McComas yesterday about how my parents' fierce aversion to anything that resembles a nursing
home. Their dislike covers nursing homes, assisted-living facilities, continuous care-campuses, even retirement communities.
My dad's attitude is the same as the state of New Hampshire license plate: "Live Free or Die!"
My cousin Jack said his dad was a lot like that, too. After Jack and his brother Dix pestered their father, Uncle
Jack, he finally agreed to test out an assisted-living home. "I'll stay there one week," he promised. "Then we'll see."
He lasted just one hour.
According to Jack Jr. his dad spent the hour at the facility getting more and more claustrophobic. Complaining that he
felt kidnapped and trapped, he burst out of the building. Like the good preacher that he is, as he made his jailbreak he was
humming, "Free at Last. Thank God Almighty, I'm free at last."
A COMPROMISE FOR UNCLE JACK
Jack Jr. suggested that my parents consider having a person visit their home each day for a few hours. Then they could
still live independently, but they would get the support for daily maintenance tasks they can no longer keep up with, including
laundry, shopping, cooking, housecleaning, etc.
"This is what we have Dad doing," he told me. "We have two people who come in daily and watch after my father. They do
lots of little things around the house. They make sure Dad is safe. They keep an eye on his health and well-being. And they
make good companions. He has become very attached to them, and they to him."
"Maybe," said Jack, "this is something your parents might consider."
A PEEK-A-BOO GIFT CARD FOR LIBBY AND BABE?
My parents, Libby and Babe, are having trouble even having someone come into their home for a few hours a day. And when
we suggest something more drastic, like a live-in caregiver, they really get nervous.
"But you don't want to go into an assisted-living home," we kids counter. "And you can't keep up with the housecleaning
and daily home chores."
We're stuck because my parents are stuck. While they are still feeling able, their number-one priority is their personal
space and their independence. They don't want to psychologically "throw in the towel" and say they are finally needy, dependent,
and over the hill.
How do we get un-stuck? Perhaps we should look for a gift card to an assisted-living facility that would be valid for
a one-week "peek-a-boo" visit to test the waters. My mother-in-law, Doris Letts, came up with this idea this morning. She
lives in a CCRC -- "Continuous Care Retirement Community" -- in Media, Pennsylvania. "Your Uncle Jack had a good idea," Doris
told me this morning. "Perhaps what a lot of seniors (mostly men) need is to make a 'non-binding' visit to a home before they
agree to sign up permanently. A one-week visit would be just enough to decide whether it was what they needed."
Doris told me that her husband Bill was also deeply opposed to moving to a retirement community. "Maybe I would have
been opposed, too," she said. "But I had the good fortune of visiting our community (Lima Estates) twenty years ago for a
bridge game with an old friend who lived here. From that point on, I knew what to expect. I knew it was a pretty nice place."
"Beyond that," said Doris. "You don't have forever to make up your mind. These places are looking for what they call
active seniors. They admit people who are still independent and can pretty much look after themselves. If
you wait too long, you become an inactive senior. If you are on the outside, that's too bad. But if you are
already a member, it's a natural progression, and they bump up the care to your new level. But you'd better not wait to long
to decide, or it'll be too late and they won't let you in."
So maybe to get my Mom and Dad over their stark black-and-white image of retirement communities, they need a gift card
to let them try a place for a week to get a look at life on the inside. Then at least they can make an intelligent decision
on what to do next. And the experience should jolt them into a decision either way. It might be just what they need to take
the next step on their own, rather than wait for a crisis or emergency to take the decision out of their hands.
I asked Doris if she thought the gift card could be Uncle Jack style, i.e., just for one hour. "No," she replied, laughing. "I
think it ought to be for a little longer than that."
Friday, January 6, 2006
We Have to Go!
My mom is all about motion.
She has played tennis her entire life. And at 81 I know if I met her on the tennis court I wouldn't stand a chance.
Ever since I can first remember, Mom has been on the go. I can't picture her standing still or, yikes!, sitting down.
No way. She is movement, hustle bustle, go, go, go.
Which makes it all the more a problem now that she has Alzheimer's Disease.
WHERE ARE YOU GOING, MOM?
My sister Lisa and I were talking about Mom two days ago. Lisa picks Mom up twice a week and takes her shopping and out
to lunch. They do errands and get in some girl time together. It gives Mom some structure to her days and something to look
forward to.
Lisa said that Mom is like a toddler. She always needs to get her wiggles out. As soon as they sit down or stop someplace,
Mom gets anxious and wants to get going. This is a typical conversation:
MOM: "Let's go, Lisa."
LISA: "Go where, Mom?"
MOM: "I'm not sure. But let's go."
LISA: "There's no schedule, Mom. We're just hanging out."
MOM: "It doesn't matter. I want to go."
Lisa said that she and Mom talk like this at least a couple times every day that they get together.
WANDERING AND ALZHEIMER'S
Helpguide.org's
report on Alzheimer's says that one quarter to one half of all persons with Alzheimer's Disease wander. They wander mentally, of
course, but they also wander physically. They have this overriding urge to keep moving. But they are disoriented and they are
losing their memory, so when the urge hits ... they wander.
It is purposeful behavior without purpose. It is goal-oriented behavior without a goal. In some ways it's very healthy.
Think about it. We wake up every day and we make a mental outline of the tasks for the day. Some of us are so good at this
that we organize the tasks, prioritize them, and make a game out of getting them done as efficiently as possible.
This was my mom.
Her need to keep moving is part of her core personality. Her desire to stay on task, stay on schedule, shines through
the fog and bewilderment brought on by the disease.
It is a blessing to see my Mom still active, still wanting to go places, still eager to do things and keep busy.
But it is also a burden. My father has heart problems, knee problems and arthritis all through his body. He moves slowly when
he moves. And, most of the time, he'd rather not move at all.
But as soon as Mom wakes up in the morning, she starts bugging my Dad: "Let's go, Babe. Let's go." For Mom, it's always
time to go, go, go.
Mom's need to keep moving may be a warning sign that we should watch. Mom has not wandered off on her own yet. When
she does go someplace there is always a good reason, and she almost always goes with another person. But what happens if another
person, especially my dad, is not available? Right now Mom's need to move is more important than her schedule or her destination.
If this urge takes over, she may decide to head out on her own.
And she still has the keys to the car.
Thursday, January 5, 2006
Knockwurst, Sauerkraut & Five Cigars
My 88-year-old father threw a temper tantrum last summer. And it worked.
He was exasperated that his four children and his circle of friends seemed so unconcerned about his wife Libby's worsening
case of Alzheimer's Disease.
He yelled at friends and he yelled at his children. And it got our attention. Since the summer we have met monthly, been
in touch weekly by telephone; and my brothers and sister show up daily at Mom and Dad's apartment to provide support. Mom
and Dad's friends invite Mom out whenever they can so Dad can catch up on his real-estate work or just relax from the burden
of being a 24-hour caregiver to a partner with early Alzheimer's.
Dad is more mellow these days. His kids show up on his doorstep and call him on the phone several times a day. Friends
call and whisk mom away to parties, luncheons and bridge games. Once he is dressed and has eaten breakfast Dad walks
thirty yards across the narrow street in front of his apartment and goes to work at his office, Valdig Investors. When he
and Mom want to shop, all they have to do is walk two blocks and they are in downtown Media, their hometown for more than
fifty years.
Oh, yes, and one block away is their personal restaurant.
Dad started D'Ignazio's Towne House Restaurant in the early 1950s. Today it occupies an entire block, right in the heart
of Media. My brother-in-law John Carnie manages the Towne House. My sister Lisa (John's wife) and my brother Tim are assistant
managers and report to John.
Lisa and I were talking yesterday about how well Mom and Dad are doing. Mom's daily dose of Aricept and Namenda seem
to have slowed the progression of Alzheimer's Disease. And Dad seems more comfortable now that his family and friends are
giving him more support.
"He's very comfortable," said Lisa. "On New Year's Eve we invited Mom and Dad up to the restaurant. We put a candelabra
on their private table which was right next to the hostess desk where I work. They held court and entertained dozens
of staff members and customers who came up to wish them Happy New Year.
"They had a nice dinner and went home around 10 PM. Then the next morning, New Year's Day, the Towne House got a
call from them."
"What about?" I asked. "I didn't even know you were open."
"We hadn't opened yet," said Lisa. "Dad was calling because he and Mom were hungry from all their celebrating. Dad told
the on-duty manager Mike Howanski to send him and Mom knockwurst and sauerkraut sandwiches and five cigars."
ABANDONING THEIR SUPPORT NETWORK
Dad and Mom are comfortable, right where they are. So why are they turning their back on this elaborate support network
and heading to Florida in the middle of this month?
No one knows.
It's true that they have wintered in Florida, in Key Largo, for decades. But even a year ago Dad was more active physically,
and Mom's Alzheimer's wasn't as advanced.
Knowing that they were thinking about going to Florida, Lisa worked hard this fall to line up a live-in caregiver. She
and Dad screened caregivers who could live with them, then travel to Florida when the time came.
But nothing came of all these interviews. Dad no longer was desperate. Things seemed to run smoother. He liked the status
quo. Also, he didn't like the idea of having a stranger move in with them.
So now they are headed to Florida. Alone.
My brother Owsley will drive them down in their car. He'll stay with them a couple of weeks while they get situated.
But then Owsley will come back to Pennsylvania.
That leaves Mom and Dad in Florida without their children, without a caregiver, and with a dwindling group of Florida
friends.
How will they get along? Stay tuned.
Wednesday, January 4, 2006
You Sit Down to Dinner and Life As You Know It Suddenly Ends
I've just returned from a holiday trip to Pennsylvania to visit my mom, dad and approximately one hundred other relatives.
(You know who you are!) It is a happy peak experience to drive 400 miles, party till you drop, then drive 400 miles back home.
But it is also a bit exhausting.
I loved every minute with all of my relatives, but I especially treasured the time I had with Mom and Dad. Now each time
I see them I get kind of choked up. My wife recently lost her dad, Bill, and I know that there was one time when she said
good-bye to him (it was on his hospital bed shortly before he died) that it was the last time she said good-bye to him.
This is the feeling I have when I am around my 81-year-old mother and my 88-year-old father. Just maybe (God forbid),
but just maybe, this is the last time I see one or the other one alive.
When Janet and I left them four days ago suddenly I bent over my dad's easy chair and wrapped my arms around him and
squeezed him as hard as his arthritic and painful shoulders could bear. And I held on.
Later Janet asked me if I had learned something new about Dad's health to make me so unwilling to leave him. Nope,
I told her. But when I was hugging him I was thinking of the quote from Joan Didion's new book,
The Year of Magical Thinking:
Life changes fast.
Life changes in the instant.
You sit down to dinner and life as you know it ends.
The question of self-pity.
Joan wrote these words after her husband, fellow writer John Gregory Dunne, died at the dinner table in late 2003.
Didion's "magical thinking" is about grief. It is about the journey the mind and heart go on after the unthinkable happens--when
the dearest person in life suddenly passes away.
After Bill's passing and after reading Joan's book, the passing of my mom and dad is no longer unthinkable. Name
a date in the near future: October 2006? March 2007? 2008?
Will my dad still be here? Will my mom?
Very possibly they won't be. So how do I feel about that? How do I feel when I hug them good-bye? How do I feel
when I call them up on the phone and hear their dear, sweet voices just one more time.
Just one more time.
