Friday, January 26, 2007
Teri's Response to the Blog
On Wednesday I featured my sister-in-law Teri's comments about my brother Owsley's experiences with my parents. After
she saw the blog, Teri wrote the following:
I hope I am right......the pings/pangs are the sounds of being in a different house. The clumping footsteps
are the upstairs neighbors that are oblivious to anyone below.
Mom was up most of the night with issues that evening.
Normally, it is Pop........by the time Owsley gets everyone settled and then gets his head down - someone is getting up early
and oblivious he is only getting 3 hours if that.............
But I think you are right - Owsley is much more intimate
and Nurse Nelly........he is "the" physical caretaker in every way.
You do a fabulous job from afar..............hugs
to you and
thoughtful/insightful writing process. Interesting to see my morse code shorthand be analyzed.................."did
I say that?" is my reaction, but if I think about it - I guess I did.
blog on.
Wednesday, January 24, 2007
Conflicting Stories
I received an email from Owsley's wife Teri this morning:
Always interesting to get your story.......such high contrast to O's tonight ....he is exhausted
after yet another sleepless night in Media.....awake to pings/pangs/health issues/heart monitors/clumping footsteps up above
and one senior or another in an urgent crisis/early risers ... it is endless all night long.
Teri is a faithful reader of my blog. She
makes me realize that what I see when I stay with my parents at their apartment is so narrow and subjective. I realize now
that my parents treat me differently from Owsley. They regard me differently. They expect different things from me.
Over the years Owsley and I have been at opposite ends of the spectrum, in our parents' eyes and in the eyes
of our family. This image has been shaped by our life choices and by our personalities.
I have chosen to work and raise my family far away from my family in Pennsylvania. Owsley, on the other hand,
has never moved away from home for more than a few months.
I am a more professorial and emotional person than my brother. I like to read books, discuss ideas, and deal
with abstractions. In contrast, Owsley is all about the concrete, the physical, the practical, the here and now.
My parents always said that whenever they made a rest stop on the highway, they could count on Owsley to scrutinize
the rest rooms to make sure they were clean, functional and sanitary. Owsley can rebuild a car, rehab a house, cook a gourmet
meal, bandage a wound, and repair a water heater. He's a very handy guy.
Here is the insight I gained from Teri's email:
When Owsley stays with our parents I think they let it all hang out. Owsley is hearing their moans, their groans,
their aches and their pains. They are totally honest with Owsley. What they feel is what he gets. They know he can take it,
and as their proxy parent and caregiver, they hope he can fix it.
Me, on the other hand?
With me they tiptoe quietly around the apartment so as not to disturb my beauty
sleep. They stifle their coughs and whines. My, God! I now realize it! They still act like parents! I now realize what a noble
act they've put on for my benefit.
God bless them.
And God bless Owsley.
Tuesday, January 23, 2007
We Never Go Anywhere
I called my dad yesterday, and he said that keeping up with my mother was a full-time job.
Dad spends every waking moment keeping Mom entertained and alert. But it's a thankless task because Mom doesn't remember
anything that Dad does for her. Because of her Alzheimer's Disease, she is always "stuck in the moment."
Witness Sunday.
On Sunday Mom and Dad got up. Mom made breakfast for Dad. Then Dad hustled Mom off to church and took a quick breather.
When Mom returned from church their friends Joe and Naomi Tercha arrived and took them to lunch. "Joe took us to a nice
restaurant outside Media," Dad said. "And he was gentleman enough to pick up the tab."
After the Terchas dropped them back off at home, Mom and Dad settled in to watch the NFL football playoffs on TV. They
heard a knock on the door, and it was their two grandsons, Andrew and Patrick D'Ignazio. Andrew and Patrick stayed and watched
football with my parents and kept the house buzzing.
Dad made hors d'ouevres for everyone.
After the boys left Mom came up to Dad and said, "Babe, I'm hungry. Let's go eat."
Dad hates to go out at night because he is so frail. But he had promised Mom he would take her to dinner. They got in
their car and drove the block to the Towne House Restaurant so Mom could have dinner out.
When they came back home, Dad settled himself in front of the TV in the living room to watch a little more football.
Mom was content at first. But after awhile she got bored. She got up from her chair and came over and stood in front of Dad
to confront him.
"Babe," she said. "I'm tired of this. We haven't done anything all day. You never take me anywhere."
Friday, January 19, 2007
On Track in Pennsylvania
I called Mom this morning. Even with Lisa out of town, it looks like the kids are looking after her and Dad. Owsley spent
the night with them last night. And Mom said Timmy was on his way over from the restaurant to take them to the clinic for
Dad's radiation treatment.
Mom has a script she recites whenever anyone asks her about Dad. When I said, "How's Dad doing?," she said:
"Just fine. He's really hanging in there."
Dad has a million things wrong with him. So I'm glad he's still hanging in there.
I get frustrated that Mom pops up the same answer to me. On the other hand, I'm lucky to have a Mom who always puts a
brave and optimistic face on things. I've never called and had Mom complain. Not once. Whenever I call, she says she is doing
fine and Dad is "hanging in there." I am blessed to have such cheerful and strong-willed parents.
Thursday, January 18, 2007
Staying Independent
I'm amazed at Dad's great desire to stay independent. He might sacrifice Mom's health. He might sacrifice his own health.
But he will stay independent to the very end.
After talking with Tim and Owsley yesterday I have a more sober take on the meeting that occurred last week. Tim, Owsley
and Lisa did meet with Dad. And Dad did agree to get more help for himself and Mom. But there's no telling when this help
will actually be on board. According to Owsley, "We're basically back to where we were six months ago."
This is Dad's game.
Owsley has some leads for caregivers. He has made phone calls and is waiting to hear back. So far, nobody has returned
his calls.
Our primary lead, Jone McGrath, is busy taking care of another senior and won't be available (except on weekends) for
several weeks.
All four of us children throw up our hands about Dad and Mom. Last week I reported that my parents have stopped driving.
However, according to Timmy, "They're driving back and forth to the restaurant. But I know Dad. If he wants to drive somewhere,
he will."
Dad's skin is a mass of sores. His elbows, hands and knees are almost useless. He has fainting spells. He is wearing
a heart monitor. He has leaky heart valves. His whole body is a stiff, brittle shell. But that doesn't stop him. Every morning
he gets up out of bed and looks after my mother. He supervises her, stirs her up, and flirts with her.
He goes on through sheer will power. For Dad, independence is as essential as the air he breathes. I suspect that when
he loses his independence he will cave inward, mind, body and spirit.
He frustrates the heck out of us kids. But inside we all know what is going on. Every second for Dad is painful, but
he is still his own man.
Tim put it well yesterday. "He faces it all bravely," Tim said. "He does his own thing."
Wednesday, January 17, 2007
Dad's Heart Monitor
Dad has a condition known as
congestive heart failure. This occurs
by a loss of pumping power
by the heart, resulting in fluids collecting in the body. According to the University of Alabama at Birmingham medical school
website, congestive heart failure is:
A condition in which the heart cannot pump out all of the blood that enters it, which leads to an accumulation
of blood in the vessels and fluid in the body tissues.
I spoke with my brother Tim today on the telephone. Tim said, "I saw Dad's congestive heart failure
in action last week."
I asked Tim what he meant by that.
"I took Dad to see Dr. Mishalove, and he put Dad through an echo-cardiogram."
(I looked up "echo-cardiogram" on the web and found that it is a sound wave test of the heart. It is an ultrasound of the heart.)
"What did you see?" I asked Tim.
"I saw Dad's heart valves," Tim said. "They were fluttering, like fish or tadpoles, right before
my eyes."
"Is that good or bad?" I asked.
"Bad," said Tim. "They are supposed to clamp down hard so Dad's blood only flows in one direction.
Instead they weren't closing tight, and the blood created little whirpools around Dad's heart."
"That could explain
Dad's spells where he feels faint," I said.
"It could," said Tim.
Tim told me that last night my Dad had a heart monitor placed on his body. He will wear this monitor
for the next two weeks. It will log his heartbeat and heart efficiency so Dr. Mishalove can see a real-time snapshot of Dad's
heart in action.
After our conversation, Tim planned to drive to my parents' house to take Dad to his radiation treatment.
He promised to ask Dr. Mishalove if he had seen a difference between Dad's ultrasound this year and one he had a year ago.
Tuesday, January 16, 2007
Out of Focus
I called my Dad yesterday to talk with him about his meeting last week with Lisa, Owsley and Tim. (Please see the last
couple blogs.)
Dad was in a good mood. He said his two-week-old cold was finally getting better. He didn't have anything to say about
the meeting with my brothers and sister.
I asked him about the new plans for Jone McGrath coming in as a caregiver. He said that Jone wasn't there; she was busy
looking after another person and would not be coming to my parents' house in the near future.
I had a nice talk with Dad but I left the conversation mystified.
Lisa is on a trip for two weeks, so I'll call Owsley and Tim to see what they make of this.
Monday, January 15, 2007
More Help for Mom and Dad
Last week my brothers, Owsley and Tim, and my sister, Lisa, met with my father. They told him that it was time to find
some more support for him and Mom. Owsley, Tim and Lisa had already set up a previous meeting earlier in the week, but when
they arrived at my parents' apartment they found Dad fast asleep.
Everyone was sure Dad was going to refuse all offers of support. Dad's master plan has been for each of us kids to
move in with him and Mom for a week each month. Four kids, four weeks. Full-time support.
Dad's plan was a non-starter. Each of the four kids already has a family, a job, and a life of their own. It would
be hard for us to move in with our parents for a week a month.
My brothers and my sister told Dad they had an alternate plan. They told Dad that he and Mom needed a person who would
come in daily to help them bathe, dress, cook, do household chores and take them on errands, especially doctors' appointments.
To their surprise Dad said yes.
This is a happy occasion and a sad one, too. It is happy because Dad and Mom desperately need more support. It is sad
because Dad is a stubborn, ornery cuss. He's been this way his whole life. He is like the New Hamphire license plate: "Live
Free or Die."
Dad never lets down. He never backs off.
This time he backed off.
It is the passing of an era. Our dad is not the same man he used to be. We knew it. Now maybe he knows it, too.
Lisa and my brothers have spoken with Jone McGrath (see earlier blogs). Jone has already been visiting my parents on
an occasional basis. Now she will come by regularly to help Mom and Dad.
We still need helpers for my parents
when they visit their home at the New Jersey seashore and when they go to Florida.
For the moment my parents are staying put. Dad has three weeks of radiation treatments remaining on his leg. After
that they think they will go to Florida.
In the meantime, Dad agreed that he and Mom won't drive any more. They will have one of us kids drive them
or use their new helper as a chauffeur.
I am proud of my brothers and sister for confronting Dad and presenting him with the inevitable. It was hard to do, but
it was necessary.
Friday, January 12, 2007
Mom and Dad Need More Help
I got a telephone call from my brother Tim yesterday. Tim said he was taking Dad down to the hospital every day for his
radiation treatments. In addition, Dad has been having near-fainting spells, and he has been seeing several doctors to find
out what is going on. Tim is Dad's "medical driver," and he has been spending hours and hours recently driving Mom and Dad
around and waiting in doctors' offices.
Dad is getting weaker and weaker. He has a new health issue every couple of weeks.
When Tim called me he said that he, my sister Lisa and my brother Owsley are going to meet with Dad to see if they can
persuade him to hire a caregiver. Dad and Mom have an insurance policy that covers a caregiver. The caregiver could show up
daily. They could drive Dad to his numerous doctors appointments. They could drive Mom around on her errands. They could do
lots of chores around the house. Dad has to closely supervise Mom on all these chores. A caregiver would take a big burden
off Dad.
NEW DOCTORS
I called Dad this morning. His speech still sounds slurred to me. He speaks more slowly. I asked him how he felt. He
said "Okay."
He told me that he is seeing new doctors. He saw a neurologist yesterday. "I'm crazy in the head," Dad said. He also
saw a psychiatrist.
I asked him if maybe the spells might be related to the supply of blood in his brain. (I was thinking mini-strokes.
And Dad has a weak heart.) Dad said he was having spells because he was "crazy."
Dad said he was tired of seeing doctors. He said that if a doctor wanted to see him, they could come to him.
Thursday, January 11, 2007
Update on Dad
I talked to Dad on the telephone on Tuesday and Wednesday. He said he is doing fine, but that he doesn't have
any energy. He mentioned his spells.
What struck me was how he spoke. He slurred his speech. He repeated himself several times. He talked very slowly.
After a few minutes on the phone his speech improved.
What am I to make of this? Are these spells possibly mini-strokes?
I will call Lisa, Owsley and Tim today to see what they make of this. Also, I'll call Dad and check in with him again.
I told my daughter Catie to call Dad whenever she can. You never know how long he will be with us. Catie is worried about
Dad. She is getting married this year, and she worries that Dad won't be around for her wedding.
I'm worried, too.
Tuesday, January 9, 2007
Dad Has More Spells
My sister Lisa called yesterday on the telephone and told me that Dad has been having more near-fainting spells.
Lisa says that Dad doesn't lose consciousness or become disoriented, but he becomes weak and feels like he is going to
faint. Lisa said she watched Dad go through a spell at the Towne House Restaurant over the weekend.
My brothers have taken Dad to see his cardiologist, Dr. Mishalove. Dr. Mishalove doesn't recommend any changes in Dad's
medication or schedule for the moment. But he is monitoring Dad's condition.
Dad's health hasn't been stable for a long time. Each week he has a new mini-crisis. He always pulls through,
but he is getting weaker and weaker.
I will report back what I hear from Pennsylvania.
Monday, January 8, 2007
New Stem Cells for Alzheimer's?
Stem cells may soon offer hope to my mom and other Alzheimer's sufferers. Stem cells are parent cells that
can develop into almost any other cell in the body. They are found most commonly in people's bone marrow and in the human
embryo or fetus. Stem-cell therapy can be used to treat Alzheimer's Disease in its early stages by creating new brain cells
to replace those destroyed by the disease.
(Note: Stem cells cannot replace precious brain cells that store a person's memory. But they can be a rich source of
new brain cells that can be used to form new memories.)
In a front-page
story, this morning Raleigh's News and Observer describes on-going research at Wake Forest University in Winston-Salem, North Carolina.
Researchers Anthony Atala, Elizabeth Howse and other team members have discovered stem cells in the amniotic fluid of pregnant
women. Amniotic fluid is the liquid that holds the fetus in a pregnant mother's womb.
The team has also isolated new stem cells in the
placenta, the blood-rich organ that feeds the fetus in the womb. The placenta is a miraculous organ. It grows in early pregnancy,
provides the hormones that a fetus needs throughout its development. It supplies valuable nutrients to the baby. It handles
waste materials from the baby. And it is disposable once the baby has been delivered.
Thousands of parents have already been saving the umbilical cord of the mother after she delivers her baby. Cord blood
is a known source of stem cells. Couples bank these genetically unique cord blood cells for the future health of their loved
ones. The national
Cord Blood Registry is the key coordinating center for saving or donating cord blood.
Friday, January 5, 2007
New Year's Eve with Mom
On New Year's Eve, December 31st, I spent the entire day with Mom. It was a Sunday, so we got up together, had breakfast,
and went to church. Then we said good-bye to Pop Pop and off we went, driving the highways and the backroads around suburban
Philadelphia. We went out to breakfast together at the Trolley Stop Diner in Media. We met up with my cousin Dot, and we followed
her to Aston to get a look at her daughter's new house. We visited with Dot's daughter Courtney's family and played with baby
Colin. Then we drove to Westchester and had tea and conversation with Lisa's daughter Shannon who is visiting from California.
After we said good-bye to Shannon we drove to the Media Ale House and had holiday drinks with Janet and her sisters and Mom
at their annual "Ladies Luncheon." Next we drove into Media and shopped at the Acme. Pop Pop had given us a long shopping
list, and Mom and I plowed through the New Year's Eve shopping traffic and rounded up all of Pop Pop's goodies. We made a
quick stop at the liquor store for New Year's Eve beverages and finally returned to Mom's apartment seven hours after it all
began.
INTERACTION IS THE KEY
Dad is always telling us kids that it is important to engage Mom in every conversation. Dad plays the role of Mom's
"spark" or "trigger" to help her stay connected to the world around her. And he's right: when you don't talk with her for
awhile she gets that dazed look. She retreats to some inner place inside her head. It's a sad sight, like watching the Energizer
Bunny suddenly lose all its juice and stop dead.
Mom doesn't initiate conversations on her own. You have to actively keep asking her questions and be almost overly bubbly
and exuberant to keep her involved. Dad, of course, also relies on insults, jabs, flirting, compliments--anything that keeps
her stirred up.
On New Year's Eve Mom was wonderful. She was active mentally the whole day. But I am an interaction freak and I didn't
let her alone for more than a few seconds. Somehow she never grew tired of my questions and jokes and gentle pranks and goofy
remarks. She often responded in kind and kept me on my toes, too.
DINNER, A TOAST AND FIREWORKS
After our whirlwind day, Mom and I had hors d'oeuvres with Dad at their apartment and watched some football
on TV. Next I drove to the airport and picked up Catie and Dave, who had just returned from a wedding in Nicaragua. Then
Catie, Dave and I swung back to the apartment and picked up Mom. We met Janet, Laura, Laura's boyfriend Joe, and all of Timmy's
family at the Towne House for dinner.
Mom hung in there at dinner during all the commotion and chaos. She even delivered a moving toast that her and all of
the rest of us in tears.
(As a side note, Lisa was marvelous to find space for us in the Towne House on New Year's Eve night, one of the restaurant's
busiest nights of the year.)
After dinner we walked back to the apartment, talked with Pop Pop, and then we moved out onto the front sidewalk and
street and set off a giant Roman Candle and burned several over-sized sparklers. Mom was in the thick of things the whole
time. She was very cute running up and down the sidewalk with her giant sparkler.
Happy New Year, Mom!
Thursday, January 4, 2007
Babe's First Radiation Treatment
Today Dad had his first radiation treatment at Crozier-Chester Hospital. I called him this afternoon, and he said he
was in and out in "about 10 minutes." I asked him if it hurt. He said he didn't feel a thing.
"I didn't even have to take off my pants," he said. "I just rolled my pantleg up to my knee and they did the treatment.
It was painless."
A DRAMATIC 24 HOURS
Today's appointment went well. Dad said after today he has only 29 radiation treatments remaining. He is counting them
down, one at a time.
Yesterday was much more dramatic.
Yesterday around lunchtime, Lisa went over to Mom and Dad's apartment to fetch Mom for their weekly errands together.
When Lisa arrived she saw that Dad was looking pale and was acting odd. Lisa asked Dad what was the problem. He
said that he had been having "fainting spells."
Dad is on several medications for his blood pressure, his arthritis, and his congestive heart disease. Dad said he had
missed one of his doses. Lisa became alarmed and hustled Dad and Mom into the car and drove them to Crozier-Chester Hospital.
At the hospital they met Dr. Mishalove, Dad's cardiologist. Mishalove checked Dad's vital signs. He put a cardiac monitor
on Dad. And he gave Dad a stern lecture on taking his medications on a strict schedule. He told Dad that if he missed even
a single dose he mght have a stroke.
Wednesday, January 3, 2007
Support from Mom's Church?
Mom and I attended the 10 AM service this past Sunday at Christ Church in Media. Christ Church is just around the corner
from Mom and Dad's little apartment.
After the service Mom told me that she was sad that no one in the church recognized her. She has been a member of the
church for more than 50 years, and she worked many years as a secretary to the church minister and as the leader of the church's
altar guild.
When we left the service on Sunday, only one lady recognized Mom and said hello to her.
Today I wrote the minister of the church who conducted Sunday's service. Here is my letter:
Hello, Reverend Marie,
I met you this past Sunday at Christ Church with my Mom, Libby D'Ignazio. I introduced myself to
you as Mom and I left the church at the end of service.
I'm writing because I wanted to ask a favor on behalf of my Mom.
Mom is 82 years old and she has Alzheimer's Disease. She has been a member of Christ Church since
1950. After the service she said to me, "Freddie, I worked at Christ Church as a secretary for Father Albert (back in the
1950s and 1960s). I was a member of the Altar Guild for many, many years. But now I go in my own church and no one knows me."
Reverend Marie, could you possibly include my mom in the congregation's weekly prayers. She is a
beautiful person, but her world has shrunk terribly since the onset of her disease. I know if she saw her name in the weekly
program, or heard her name mentioned in church, it would mean a lot to her.
I don't know if there is any other kind of support for my mom. But maybe you know of something. Dad
and Mom live across the street from the church at 206 South Avenue (phone: 610-566-0814). Mom is very isolated. Dad has opted
to try to live independently with Mom. They have only minimal housekeeping and caregiving assistance. Dad is 89 years old,
and he has many health problems. He is sharp mentally but very weak physically. Mom, on the other hand, is physically strong
and healthy even though the Alzheimer's is taking a toll on her mind.
Mom is hobbled mentally by her disease but she is still a sweet and loving lady.
I just wanted to make her known to you and to Christ Church in the hope that there might be some
recognition of her disease, her social needs, and her long and loyal dedication to Christ Church over the years.
Thank you for Sunday's service. It was simple, spiritual and beautiful.
Peace,
Fred D'Ignazio (919-244-7601)
I heard back from Mother Marie a few minutes later. Here is her reply:
Hello Fred,
Yes, I remember you very well -- you were so gentle and caring with your mother.
Yes, I am passing along your request to Mother Sara, The Rector, and I know the unusually good,
most loving work of the pastoral care team at Christ Church and I am sure that Mother Sara will be with a caregiver for
your Mother and Father, very soon, making sure that a special visitor regularly visits your parents.
Thank you for your kind words about the worship at Christ Church; the whole team of liturgical
ministers is the best -- musicians, acolytes, servers, chalicists and readers! And, as you noticed, the whole congregation
is very interactive, passionately spiritual.
I will keep you and your parents in my prayer, and please, make yourself known to Mother Sara,
the next time you are 'up north' for a visit to your parents.
Faithfully,
Mother Marie Swayze +
I was pleased by Mother Marie's email. I don't expect the church to provide
practical caregiver support. However, I think Mom will be tickled to receive visits from church members who care about her
and about Dad.
Mom gets a huge amount of pleasure from her faith and from going to church.
It would be neat if she felt more a part of the church community.
And the prayers and good wishes from the church members will provide Mom with spiritual blessings.
I think Mom will be delighted to discover that she is on other people's minds and in their hearts.
