Wednesday, July 1, 2015

Grace and Transfiguration


Nandina leaves and Fennel blossom

Turning Leaves

As I age,
change will come.
To some,
it looks like disease.
I shall morph,
and endure degradation.

This process
is from nature.
Let us try
not to fear it -
not overmuch.

Within my new colors,
my true self

The fuel for
my progress

My father has been gone 5 months now. His presence is still strong in my house. In the suite of rooms he occupied, his pictures still hang on the walls, furniture remains mostly in place, and clothes still await him in the closet and drawers.

The last shirt he wore is hanging from its wooden rod, the pocket still holding his ever-present tire gauge and a pen and pencil. These items were consistently with him, even when he could not remember whose house he was in, nor what city he currently occupied, nor the name of his beloved dog. His personal habits remain, in suspended animation. Shirts, socks, pants - all these seem to be holding their thready breath.

Several sets of dominoes are gathering dust. Old score sheets line the canvas bag in which we toted our "bones" to the senior centers every week. The specially-designed domino table is folded and stored in the garage near his 1955 Oldsmobile.

The dogs, and especially his own dog, Toto, spent several weeks waiting for him to return after he passed away. They have adjusted by now, but I think Toto still looks for him, now and then.

We feel lost without him. Our days and nights were scheduled around his needs and interests. Meals, walks, medications, appointments, errands, conversations we recycled several times a day - these are now shelled out to fit only two people. For quite a while, we set the table for three people: habit persisted despite Dad's absence. His chair stood empty at the kitchen table and his favorite easy chair was used only by the dogs. There is less energy required to keep house, fewer loads of laundry to do, smaller meals to prepare, nobody to keep entertained. As a caregiver, I am out of a job.

I tried to always see him as "Dad" and not as his memory disorder. He did change outwardly over the eight years he lived with us, but so did we! He kept charging along, up until his last three weeks of life, wanting to keep up his habits and routines. My husband likes to say that Dad had a "strong self-image" - a sense of who-what-how he essentially was as a person. He was a very consistent personality.

He developed double pneumonia at the end - caused by a faulty swallow reflex that was part of his Parkinson's Disease. He aspirated some food or drink and it set up shop in his lungs, instead of in his stomach. We decided to bring him home from the hospital and do home hospice. It was a very intense time, but we had private-duty nurses coming in all day and night, so he was never alone and always cared for at every point of need. I would do it all again, it suited him. He passed on right at home, with his dogs and his family. No pain, just peace.

Through the whole process - living, losing memories, spending time together, enduring illness and also happiness - we were upheld by Grace. The best definition of Grace that I have ever heard was told to us by Sister Julie Maduka:

"GRACE is the unmeritied favor of God to empower you to do, and to become, all that God intended for you. It is a free Gift and it is Priceless."

Saturday, February 21, 2015

Dad in the SeaBees, 1943-46

Dad on Mbanika Island, 1944, with CBMU 573.
Shirts were optional.
My father served in World War 2 with the Navy SeaBees.

Here is a video that gives you a taste of his adventure in the South Pacific.

My father passed away at home on February 7, 2015.

Thursday, August 7, 2014

Dad's Very Important 5th Birthday

Dad, on his 5th Birthday, 1930
Photo by Dad's Mother
Dad's 5th birthday was a life-changing event. His family had moved from the country to the big city, they were sharing a house with friends, and public school would soon claim his childish freedom.

Stock Market Crash of 1929

It was August 11, 1930. One year before, the stock market had hit a peak high of 381.17 on the Dow Jones. But by late October, Black Tuesday stunned the world with the greatest crash the market had ever known. Ripples of the stock market crash reached everywhere. In Oklahoma, where Dad's family lived, drought had struck and the cotton crop failed. Towns and farming communities suffered greatly and many people migrated elsewhere, leaving ghost towns and small cemeteries behind.

My father's parents had been working on dairy farms and did some time as share-croppers. Grandpa was mechanically inclined and also took on odd jobs, which may be how he met Mr. Colson, the owner of the general store. When the store had gone under due to lack of funds, the Colsons moved to Ft. Worth, Texas and started life over. They got established in a two-story building which had the store on the street level and living quarters upstairs. Mr. Colson wrote to Grandpa and said he should come on down to Texas and find work in the city, where more opportunities were to be had.

The Big Move

My father's parents piled their household belongings on a Model T Ford, tied a side of ham in butcher paper, loaded their two young sons in the back seat, and drove perhaps 5 hours in the heat on two-lane blacktop into a new life and a new world. When they arrived in Ft. Worth, they went right to the Colson's place, presented the ham, and moved in upstairs alongside their friends. Grandpa helped out around the store at first, Grannie looked for a job.

So it was in Ft. Worth, Texas on August 11, 1930 that my father - the shorter boy in the photo above - turned 5 years old. His mother baked a cake and put it on a glass cake stand that she may have borrowed from Mrs. Colson. Shirley Colson, the granddaughter of my Dad's benefactors, was present to help with the festivities. No doubt Dad's older brother had his share of cake too! Grannie got out their Brownie box camera - you can see her shadow partly cast over Dad's feet - and took this photo on the great day!

A Shift in Family Fortunes

From this point in our family history, so many new things happened. The boys got a good public school education in the city. Grandpa worked many jobs, but wound up as head mechanic of the City of Ft. Worth Garage. Grannie worked her way up from a seamstress to a floor supervisor with Williamson Dickies, making uniforms and jeans during World War 2. Dad signed up for the Navy from a recruiting office in Dallas, and when he came home from the  South Pacific, went to college on the G.I. Bill. His brother worked on aircraft at Convair, where many bombers and fighter jets were made and sent into the battle. Both boys had professional careers after the War and were able to provide their children with a very different life than the one that they themselves were born into.

On that hot day in August of 1930, a boy cut into his birthday cake and started changing his own path in life. He's done so much since then. Built houses, had a long marriage, raised two daughters, worked 25 years at one job and retired. He will soon turn 89! You can bet that he'll be having cake on that day too, because he still has so much to celebrate.

Tuesday, July 29, 2014

Dad's Existential Question Cycle

Question Cycle Booklet
Photo by Pam Stephan
Dad has been living with dementia for at least 8 years now. He has an awareness of his loss of memory and it does bother him. Before he retired, Dad worked as a civil engineer, doing highway design. That means math - lots of numbers: calculations, formulas, checking and rechecking. He worked on interchanges, overpasses, underpasses, on-ramps, off-ramps, frontage roads, easements, drainage plans, damage and repair estimates.

Dad lived by numbers. He was my math coach, my domino teacher, the one who introduced me to geometry and the man who taught me to sharpen my pencil with a pocketknife and an emery board. Dad did beautiful drafting work, precisely done to scale, long before computer-aided design. His handwriting reflected his early training, squared off and almost as consistent as a typeface. Dad appreciated mathematical accuracy! He was somewhat disappointed that I struggled with all flavors and varieties of math and was upset when I actually flunked Algebra 2 in high school.

Eight years ago, when Dad moved in with us, he could still reel off the value of Pi out to 13 places past the decimal point. He knew the address of all the houses he had built. While at my house, he could tell that he was not in Ft. Worth - where he and Mom had lived for 75 years. He liked to keep his checkbook register and read his calendar for upcoming events. When he flipped through a photo album, he easily named people in the pictures and even told me a bit about them.

Three years ago, my father started asking a set of repeated questions. It is a common symptom of dementia's progression and suggests a decline in his frontal lobe function. That's  the clinical explanation. Let me give you the down-home, boots-on-the-ground side of the story. As Dad's memory fades, he can no longer identify Mom in old photos or even in more recent photos. We went through many old albums before we found one that he recognized and it went back to 1946 - about the year they met! Even so, he could not remember her name! Why is that so major? Because she is the person he misses every day, all day long. These days, he isn't always sure if he is at his house in Ft. Worth, or at my house, 250 miles away. Often when he asks me where we are, I just reply, "We're at Home." He can't tell you his address. He can't manage his checkbook. He can't remember how to sign his name some days, other days he does just fine. This feels very weird to him. The person that he is, at his very core, knows that some serious deterioration is going on, but can't explain it, because of the memory loss.

Dad's Question Cycle Booklet

He has developed a set of existential questions, which he cycles through many times each day. It is very like a ritual, in that he almost always repeats his questions in the same order. These repeated questions address the basic facts of his new life in my house. Dad's question cycle is so reliable that my sister Phyllis and I collaborated on a small booklet that he can flip through to get his answers. I update the book as needed, or when it becomes tattered and stained.

Right now, the booklet cover 6 questions. Dad usually finds some reassurance and comfort from flipping through the book, but sometimes it upsets him. That's when I resort to distraction and redirection. They tell me that magicians use those same techniques. I don't have the makings of a great magician, but we can usually break the cycle if I try hard enough.

I came up with the order of his questions by carefully listening to him go through the cycle. Once I had memorized his routine, I wrote up the answers - one per page - and made up the booklet. Here's how it reads:
  • We are in (Pam's city). You have been here 8 years.
  • Mom passed away 9 years ago in Ft. Worth.
  • Phyllis was with you when Mom passed away in Ft. Worth.
  • Pam read Mom's obit in the paper 1 year after she passed.
  • You cleaned out the house in Ft. Worth and moved in with Pam 8 years ago.
  • You sold the Ft. Worth house 1 year ago. Your stuff is moved in to Pam's house.
Most dementia caregiving websites I read up on suggest that a caregiver keep their answers short, sweet, and relative - not specific, not numerical, not depressing or sad. I tried that. Yup, but in Dad's case, that didn't help. He is still a Numbers Guy. For him, comfort and reassurance comes from having the numbers clearly stated. He likes to say that he is a realist and he wants accurate answers.

Having a Memory Flash

On good days, after he has eaten well, played dominoes well (that means winning), been useful, and feels very secure, guess what? He will sometimes recite the Answers to me - instead of the Questions! Dad will actually tell me whole story, in order, with accurate numbers. We have recited his question cycle so many times, and it means so much to him, that somewhere in his brain, a copy of the Question Cycle Booklet exists!

Just hearing him do that once in a while makes me feel like I have done some good. Being a consistent caregiver takes commitment, and patience, and creativity. Sometimes it also takes a good cry alone behind a door. But when a Good Day comes along, it makes the clouds roll away and both our hearts are content. At least for a while, and that's enough to treasure.

Sunday, June 15, 2014

Father's Day: Things My Father Taught Me

Dad feeds baby Pam, about 3 months old.
Photo by Mom, June 1956
Dad was a teacher, even though he trained for civil engineering and did a lot of construction. I started learning from him when I was tiny. In honor of him on this Father's Day, here are some things Dad either taught me, or helped me learn.

Don't Argue With Mom. Why? Because you'll always lose. It's not about who's right and who's wrong, because with Mom - it's either Her Way or the Highway. If you need help, go see Dad. Just don't let Mom find out.

If You Wake Up First, You Gotta Make the Coffee. I was the kid that liked to get up early on weekends and start watching cartoons on TV, even though my parents wanted to sleep late. Dad just decided to turn that into an advantage for him, so he taught me how to make coffee (in an all-metal percolator with a glass bulb on top!) Then he made me promise not to turn the sound on the TV up too loud, and for gosh sakes, don't sit too close to the screen because it will ruin your eyes! To this day, I am still making his coffee. Smart, isn't he?

Don't Spend All Your Money Just Because You've Got Some. Once a week, Dad would hand us girls some cash for lunch. He would always ask for the change when we got home. Often, he would look it over and then let us keep it. (We didn't get an allowance and didn't get paid for chores.) It was one way of teaching us how to save. Maybe that is where I got my early training in being a tightwad.

Cars Are Members of the Family. Dad has always loved cars. His first car, bought with money earned from odd jobs, was a 1931 Model A Ford with a rumble seat. He still talks about that car! He's had a DeSoto, Plymouth, Dodge, and several Oldsmobiles. And 9 months before I was born, Mom and Dad bought their first new car, a 1955 Olds Rocket 88. It was two-tone green, 4-door, with tons of chrome and an all-metal dashboard. He spent many Saturday afternoons maintaining our cars himself and rarely took them to a mechanic. We were taught to treat cars respectfully and drive defensively. And man! If we got into a fender-bender or got a scratch on the paint, did we catch it! As for the '55, Dad loves that car so much, he still has it. After all, it's practically a person by now.

Geometry Is Good For You. He taught me how to draw with pencils that he sharpened with his pocket knife. Because he did a lot of drafting, he let us use geometric templates to start drawings. So many things can be seen as the sum of their collective circles, triangles, curves, ellipses, and lines. He would frequently bring home huge sheets of paper from the office and let us girls go wild drawing on them. We never lacked for paper and pencils and colors. It may sound odd, but even though I have mathophobia, I've always enjoyed geometry. For many years I did technical illustration, because of his influence and encouragement.

Take Care of People, Be Good to Animals. Dad brought home all kinds of stray critters. We got to have dogs and cats, but also baby possums and mockingbirds. Any animal that lived with us had to be cared for and treated kindly. Sometimes it had to go back to the wild, but while it was with us, it would have a pretty easy life. When Dad's parents retired and moved to their farm, he helped them fix up the place and get settled. And after his father died, he and Mom took in his mother for a while, until she needed professional care. Nowdays, Dad lives with us, and we spend all our time together.

There's so much more that I could list of the things that Dad has taught me. The main thing is that it is okay to love people. Even if they are unlovely towards me. People are not just here to be used. We are here to help each other. And to teach, and to learn. Happy Father's Day to all the Dad and kiddos!

Thursday, June 12, 2014

Mom's 87th Birthday

Mom, 1946
Studio Portrait

Today would have been my mother's 87th birthday. Her final birthday was spent in hospice, where she passed away 9 years ago. She and Dad were married for 60 years and he misses her every day.

Even though dementia is slowly wiping away my Dad's memories, he does not forget Mom. Like many people enduring memory loss, he asks repeated questions daily. She is a prime feature of his question cycle.

"How long has your mother been gone?"
"Where's your mother?"
"Was anybody with us when your mother passed?"
"Did your mother and I visit you here?"

Dad is aware that Mom isn't around anymore, and he is aware that his memory doesn't work too well. He has put these two important facts together and has become convinced that there is a cause and effect relationship in that circumstance. He has told me that he "lost my memory when your mother died." That she, in effect, took his memory away with her.

My parents got married soon after the end of World War II. Dad had served in the South Pacific with the SeaBees, joined up 3 days before he turned 18. On their wedding day, Dad was 22 and Mom was 20. In the first 35 years of their marriage, they had two daughters, built three homes, and put both kids through public school and college. Dad worked his way up in the Texas Highway Department, and retired after 25 years. With both kids married and out of the house, my folks felt free to travel.

Mom and Dad loved to roam around this country. She was obsessed with genealogy. They must have hit every courthouse, library and public records building in every state in the union! Mom even got Dad to drive them to Alaska - not once, but twice! - just to dig up some info on an uncle. It's a good thing that my Dad loved to drive. And that he could fix most of their cars himself.

When we cleaned out Dad's house, we found many things that my mother let behind. She did not believe in throwing things away. As for her stacks of genealogy research, she filed her papers into hefty 3-ring binders which eventually filled 37 book boxes (now in storage). Three cardboard boxes hid her "mad money" which added up to a substantial sum of cash, much of it in large bills! That made Dad chuckle. He knew her well.

There were some things that I am very grateful that Mom left behind. These things were also in boxes (and folders and baggies and old envelopes). Photos - zillions of them. About 30% of these have some writing on the back giving us some idea of what the photo may mean. Some photos are in albums of black craft paper leaves, with captions hand-written in white ink, complete with dates and names. Memories - that Dad can appreciate. Memories that Mom is, inadvertently, returning to Dad. I scan these photos - many of which are quite small, but sharply focused - and organize them into groups on my computer. Then I put them on my iPad. When Dad is blue or upset or feeling lost, we take a tour through the memories that are preserved in these photos.

This is the Mom that Dad recognizes - the young woman that he married after the war. The "skinny, fat-faced girl" that gave him children. The woman for whom he built houses and gardens.

"How long has your mother been gone?"

Mom is still here - she is the slender hazel-eyed gal in the photos. She stands beside a 1940's DeSoto coupe. She poses with a statue in some county courthouse square. She holds your young child. Here, time refuses to move along, instead it lingers with you. Mom didn't make it to 87, she didn't visit us here, but in the leaves of the old albums, she is always with you.

Wednesday, May 28, 2014

Sleeping Around is Often the Caregiver's Lot

Hospital bed and visitor's cot
Photo by Pam Stephan
In the last month, I have slept in several places. When my dad is doing well, I can sleep in my own bed. But when Dad's health or confusion brought on by dementia acts up, I sleep where I can help him or reassure him.

I've been Dad's caregiver for seven years now and as his memory loss progresses, he needs to see a familiar face whenever he is awake (no matter what time it is!)

If Dad wakes up at 3 a.m. and gets dressed, starts to walk to the back door to take his dog outside, I'm the one that can persuade him to go back to dreamland for a while. I will go to his room with him, help him settle in, and perhaps take his little dog on my lap. Toto doesn't mean to, but sometime she wakes him up. Then I try to get some sleep. I call it sleeping, but in reality, I almost never clock out from this job.

Beds are best to sleep in but, I've made do with what's at hand. Here's some places I have slept:
  • Dad's bedside recliner in his room
  • A couch within hearing distance
  • An air mattress
  • A hospital cot
  • A visitor's chair in the hospital
  • And most recently, a gerichair.

Nightmares and Dementia

Dad sometimes has very vivid dreams or even nightmares. He has often woke up, come out of his room, and asked, "Where's your mother?" (He still misses her.) The problem with that question is that Mom's been dead these last 8 years. But telling him that at 2 a.m. is unwise, because he won't believe it, or he will get really upset. Our best reply is, "She isn't here right now. Let's try to get more sleep, okay?" That's my cue to go stretch out in his bedside recliner and stick around until he is asleep.

These vivid dreams can be caused by medications like galantamine or by other drugs given to help delay or slow down dementia symptoms. Other things that mess up the sleep of a dementia patient can be sleep apnea, nocturnal bathroom visits, depression, sundowning, and changes in the brain itself. I don't know of treatments for each of those. Of course, when Dad doesn't sleep well (and I don't either!) he may nap during the day, which only disrupts a normal sleep pattern all the more.

Make a Plan for Sleep

Because a guy with dementia is already taking a collection of daily pills, I don't like the idea of giving Dad a sleeping pill.  Naturally-induced sleep is safest and best for me and for Dad. So we try to keep a standard schedule in the evenings, starting with supper. After the meal, we clean up, take the dogs for a short walk, then either try to read, go through old photos, play dominoes, or watch some news.

Bedtime is always 9 p.m. and it follows a ritual that we stick to carefully. After the dogs have their final trip in the back yard, we get everybody settled in. I make sure Dad has a flashlight and the TV remote control. We get the dog into her bed. Dad and I then get a big hug, and we recite a formula that we've used since I was a child:
Me:  "Good night!"
Dad:  "Good night!"
Me:  "Sleep tight!"
Dad:  "Sleep tight, and don't let the bedbugs bite!"
Me: "I won't, but I will see you in the morning."