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."

Sunday, May 11, 2014

Mother's Day - I am not my Dad's new Mommy!

Dora, my father's mother
Formal portrait circa late 1940's
My grandmother was a wonderful person, and could love people unconditionally. She started out in life with very little, but worked hard all her life. Grannie was a mother to two sons - my father was the younger of the two. Both of my father's parents taught their boys to be respectful, work hard, play when it was time, and love truly. Grandmother Dora was hospitable, a great cook, a wonderful seamstress, a productive gardener and rancher, and was expert at spoiling us grandkids! She endured the Great Depression, World War 2, the transition from life on a farm to life in the big city. My grannie was a real mother and grandmother - she earned those titles daily.

A couple of years ago, I was seeing a counselor to help me cope with the stress of being a full-time caregiver for my Dad. He has dementia and I spend most of my time with him. I told the counselor about many of the things that I do for my Dad: cooking, driving, home haircuts, laundry, pedicures, keeping files, managing medications, providing activities, and going to doctor's visits. She listened intently and then said, "Pam, you have a baby. It's the same as caring for a baby."

Well, I am here to tell you - Dad is not a baby and I am not his new Mommy.

Baby Culture

Many people who want to have a family plan on having a baby. They hope for the best, and prepare for the arrival of their new child. Young parents can ask their peers and parents for advice, and in many situations, they can expect support from their family and community. Their friends probably throw a party and shower them with gifts to help set up the little one in good style. Young mothers will freely give advice and swap stories about everything from pregnancy to birth to first diaper change to cutting the first tooth. When baby comes home, the parents are congratulated, and they begin the task of caring for and nurturing their child. They look forward to the many things their child will learn, and will be able to do. Perhaps they dream of what college or university the kiddo will attend. They might speculate on their child's future marriage and possibly, grandchildren!

In short, they expect the child to grow, flourish, learn new things, eventually take care of itself, and start the cycle of life anew.

Dementia Culture

My generation wasn't sure what they were expected to do when their parents became elderly. Many folks my age remember grandparents who lived in nursing homes or some type of senior apartment, set apart from the mainstream of life. I know there was exceptions, but there was a host of long-term nursing homes in the 1960's and 70's that were home to many seniors. My mother told me that she never wanted to be put in a place like that and she got her wish.

When Dad developed dementia, Mom was his caregiver at their home until she got lymphoma and passed away. He was heartbroken. He spent a year trying to live alone, with lots of help from my sister. But eventually his memory problem progressed to the point that he needed to live with somebody. Seven years ago, he and his dog moved in with my husband and I.

Caring for Dad is not like taking care of a baby. I can't hope for him to learn new things. He won't ever become independent. We were not congratulated when Dad moved in, although some folks have said kind things about our situation. There was no "Daddy Shower" of presents and advice when we were preparing for his arrival. Our culture does not yet fully support home caregiving, even though the Alzheimer's Association reports that in 2013, 15.5 million caregivers provided 17.7 billion hours of unpaid care for family members with memory loss. That number will increase as our population ages.

Limited Similarities, But No Comparison

Like a new mother, I never leave Dad alone. I provide a lot of assistance, but I provide it with respect and compassion. He still feels that he has authority over me, and I frequently fall into old father-daughter patterns because of that. Many times a day, I feel that I am about 8 years old. That's what hanging out with an 88-year old will do for you!  I never feel like I am Dad's new Mommy. Even if the day comes when he can't dress himself or feed himself, he will never be my baby. He will always be my father - the agreeable, easy-going, provider who towered over my childhood days.

So please don't wish me a Happy Mother's Day because I am a caregiver. I don't have a baby here. Perhaps I can be as strong and productive as my grandmother. Perhaps I can learn how to love unconditionally. Those are good goals.

If you know a family caregiver, no matter what their situation, please be supportive. Refrain from making assumptions about their situation, withhold judgement. Respect their role. It's a hard job, but well worth it, and it's a job that more of us will be taking on soon. And perhaps someday, somebody will be your caregiver. Then you won't be their baby, either. You will still be who you are, even if your life and your role in it changes.

Friday, March 21, 2014

Another Adventure at the Hospital with Dad

Dad is stuck in the hospital gerichair.
Photo by Pam Stephan
Last week, Dad was sluggish, coughing, sneezing, and dropping off to sleep in the afternoons. I thought it was because of seasonal allergies, which he has in spades. But when he suddenly got extra confused and unhappy, I checked his temperature and found he had a fever. Along with that, his blood pressure was climbing. His attention span shrank and he had difficulty playing dominoes - a sure sign of distress. I called his home healthcare nurse and reported his fever and blood pressure numbers. The nurse got concerned and told us to head for the walk-in clinic or else go to the Emergency Room

I hate to say this, but we are getting really familiar with our local Emergency Room. In the last 10 weeks, we had been there 4 times and 3 of those ER trips were for Dad. He had a couple of bad falls, then my husband got an overwhelming case of flu. However, all this experience had taught us to stay prepared for emergencies. We keep a bag packed for Dad, with a complete change of clothes. I gathered up my iPad (which has loads of notes and medical info stored on it) and slipped it into a bag with snacks, newspaper, and a large print Reader's Digest. My husband packed a book to read and brought our jackets. I always bring our own blanket and a small pillow for Dad, because the ER blankets are thin, while those rooms are consistently cold. 

Instead of saying to Dad, "You need to go to the hospital," I used a phrase that always gets him agreeable and moving. Since we hadn't eaten supper yet, I asked him, "Do you want to go get a bean?" I figured that he might wind up having supper in the ER (it has happened before) so technically, I wasn't fibbing. He got up and sat in the car agreeably, and off we went. 

Dad doesn't really like hospitals, but he enjoys the attention he gets from the nurses. He endures the prick of needles and the stickiness of heart monitor leads. He will take pills if a pretty nurse says they will make him feel better. But when they bring out the urinal jug and ask for a sample, that's when he refuses. This time, he got so indignant and fought back so strongly that I ran weeping out of the room. We never got a urine sample, everybody gave up. He was diagnosed with an upper respiratory infection (URI) and sent to a room on the third floor

The Storage Room
This part of the hospital was old and the room had originally been designed for two beds. Now there was only one bed, with an assortment of 4 tray tables, 5 wastebaskets, two hard guest chairs, a chaise designed to become a cot, and a gerichair. There was barely room to walk around. It seemed as if this room had become a storage place for cast-off items. As soon as Dad was settled in the bed, he declared that he was ready to leave. It took some persuasion to keep him from jumping up. My husband left to check on our dogs and to gather a few more items. Respiratory nurses came by and started treatments on Dad - these lasted at intervals until 1 a.m. All of us tried to sleep but it became impossible. 

The Gerichair
 The next day, Dad was still weak from his fever. He wanted to visit the bathroom alone. Nurses gathered around to help and he wanted none of that! An argument ensued, we agreed to leave Dad to his own devices. Within about 3 seconds, BAM! he wound up on the floor. Because I would not consent to restraints on his bed, the staff put him the gerichair for the rest of the day! He could not get up, walk around, control the chair, or adjust the angle of the back. 

The All-Knowing Hospitalist
 Later, when an unfamiliar doctor came in, asking questions that should have been answered by Dad's medical chart, I asked for a diagnosis and was told that Dad had quite suddenly developed Parkinson's Disease! Since Dad had been pipelining  a powerful steroid - Prednisone, well known to make patients wired and shaky - I suggested that medication was the issue. My medically uncertified opinion was dismissed and we were told to see a neurologist in 72 hours. (We still haven't done that.)

Dad and I Break Jail
So, after the night in the Storage Room, the Day of the Gerichair, and the All-Knowing Hospitalist visit, I pressed for a discharge. We began packing and escaped as soon as all the needles and sticky pads from the heart monitor had been removed. 

As I write this, it is four days after this trip to the hospital. I have slept each night in Dad's bedside recliner, helping him to the bathroom 2-3 times a night. Because of the fever and the enforced inactivity during his hospital stay, he is still somewhat weak. He can't afford to have another fall and neither can I endure another ER visit again soon. So we vigilantly guard him, stay on schedule with all the pills, and await improvement. And if we have to go back to the hospital, I will beg the doctor to keep us off of the Third Floor!

Monday, March 10, 2014

A Diagnosis of Dementia Changed My Dad's Life, And Mine

Pam, Dad, and Toto the Wonder Dog
Photo by Karl D. Stephan

Dad has dementia. In his case, that means that his short term memory has been fading away - in his case, slowly over the last 8 years, or maybe longer.

At first, he needed help with paying his bills, reading his bank statements, and remembering to keep appointments. He still drove himself around his hometown, did his own grooming, handled his own prescriptions, got his own meals, and maintained his house, vehicles, and yard. When we played dominoes, he cleaned up the scorecard, all the while saying he wasn't playing that well.

But if you asked him what he had for supper, he couldn't recall the menu. He sometimes mowed the grass more often - or not often enough. When paying bills, he always put a stamp on the envelope and mailed it, but some of his checks had no signature. When we had a conversation, he could talk about events from many years ago, but never remembered what happened just yesterday, or even earlier that day. I had little experience with this problem, so I made excuses constantly. I told myself that Dad was getting old (he was 80) and his neighborhood had changed a great deal (it had developed terrifically) and he had lost many people close to him (both parents and his wife).  He was functioning so well that I thought it was just normal behavior for a senior citizen who had been retired for about 25 years. But still, his memory continued to slip away, despite new pills he'd been told to take.

Eventually, his neurologist told him that living alone was no longer safe or healthy. And, she said, Stop Driving Or I Will Report You To Police! He took it very hard. My sister was with him at that appointment, she said it was very emotional for both of them. Dad seemed to think that the doctor had told him that he was "losing his mind" or going crazy. His reaction was composed of equal parts anger and stubbornness.

So it was official, Dad was diagnosed with a memory loss disorder. It wasn't labeled Alzheimer's Disease, Vascular Dementia, or any other specific type of dementia. His doctor just said, "When we get older, our circulation is poorer and we slow down and get forgetful." My sister and I started calling it STML or Short Term Memory Loss.  Dad just says his memory is shot, or that he is "out of it!" The doctors told Dad to move to Assisted Living or to get home healthcare. He would not consent to having a stranger in his house, so my sister and I had to talk things over.

First, Dad tried staying with my sister at her home, 350 miles north of his place. She has two grown daughters and three grandkids. They lived nearby at the time, and were frequent visitors. Dad could not handle the energy level there, so my sister looked into an apartment at the assisted living units down the road from her place. He tried that and lasted about four days. He would not come out of his room for anything, unless my sister came and fetched him for a meal. So my sister and Dad drove back to his home, and then she called me.

My husband and I decided to try having Dad in our home. We have no children and there was a spare bedroom. In about three days, we moved out of the master bedroom suite and set it up for Dad. The two of us moved our things into the guest room and squeezed our belongings into one closet and one-and-a-half dressers. I was working from home at the time, writing about breast cancer for, so I would become Dad's caregiver. My husband would keep teaching engineering at Texas State University.  Dad agreed to a 2-month trial of living with us, an informal agreement he signed on to in September 2006.

Dad's 80th Birthday at our house
I drove up to Ft. Worth and met my sister and Dad at his house. He brought along his dog Toto, a suitcase, a small TV, some photographs, and his favorite chair. We loaded everything into a rented SUV and headed south. We just barely had any idea of what we were getting into and no clear idea of how much our lives would change. There was no clear diagnosis, no caregiver training, no long-term plan. All we knew was that Dad needed to live with people who cared about him.

Since then, we've had many adventures. All of us have changed and adapted as best we can. Some days are harder than others, but since Dad is so agreeable, most times are fairly pleasant. Every day that ends up well is a Good Old Day. We are making as many of those as we can. And we are storing up memories. There is only one reason that we do this and keep trying, despite the changes and inroads made by dementia. That reason is Love, and it is greater than anything that a human disease can threaten us with.

Thursday, February 27, 2014

Love Endures Despite Dementia and Loss of the Loved One

Mom and Dad, 1946
Photographer unknown
On my father's side, the men only love once. And once they wed, they stand by their choice forever.

Country Sweethearts
Dad's parents were childhood sweethearts who lived on neighboring farms in rural Oklahoma. They grew up alongside each other, had the same friends, went to the same school. In 1923, at age 18 they got married. They stayed together 66 years, until the morning that Grandpa got out of bed one morning and his heart stopped. Nothing else could have put an end to their union - it probably would not have occurred to them to even consider splitting up. They were strong on family.

With little more than a grade school education, they worked hard, survived the Great Depression, and raised two sons. Both of my grandparents took extra job training so they could advance in their workplaces. They encouraged their boys to get a good education and find secure jobs. After Dad's parents retired, they moved back to a farm in Oklahoma and realized their dream of owning their own property. Neither of them really ever stopped working, but they enjoyed everything that they chose to do.

City Sweethearts
My parents grew up just two city blocks from each other. Their families were very different and didn't know each other at all. Dad served in the SeaBees during World War II and didn't meet Mom until after he returned from overseas. They didn't realize it until later, but my father had been throwing the newspaper for Mom's family for years. He just never paid attention to that "skinny, fat-faced little girl" that grew up to be his wife. But when she was 19 and he was 21, they met while walking along the railroad tracks that passed alongside both their homes. He was tall, tan, muscular, and had his own car - something that many postwar men his age didn't have. She was blonde, slender, curvy, and looking for security. After about three weeks of courting - much of which was assisted by that car - they married in December of 1946.

Mom and Dad had many differences. He was easy-going and agreeable, she was more withdrawn and paranoid. My father wanted his wife to settle down, have kids, and let him support her. She wanted to have a career and work. That discussion went on for 10 years, until I was born. And 6 years later, my sister came into the family. My folks argued over money, food, time, and relationships with relatives. My sister and I tried to stay out of these discussions. Dad kept believing that everything would work out. Mom kept wanting more and different things than Dad understood or believed was necessary. In short, Mom didn't treat my Dad well. Despite this, they stayed married for 60 years, until she passed away.

Love, Hope, and Grief That Won't Quit
Dad had started to have problems with short-term memory before Mom died. When she knew that the lymphoma that had invaded her body was going to take her life, she wanted to make sure that somebody would take care of Dad. My sister, who was on the scene during Mom's last months on earth, says that Mom grew sweeter towards the end, even towards Dad. Mom made my sister promise that Dad would be taken care of, and she did. Finally, 8 years ago, my mother passed away.

With dementia, the short-term memory deteriorates first. When Dad came to stay with me 7 years ago, he remembered much more about Mom than he does now. Mercifully, the things that remain in his memories of Mom are mostly positive. The hurtful things that happened have been lost from his mental record. He no longer recognizes her when he looks at the most recent photos of Mom, but when he sees one from 1946, he knows her instantly. He is always surprised to hear that she has been gone 8 years! Even if I tell him that sad fact 40 times daily, his grief and amazement are fresh each time. One thing helps: we get out photos of the early days of their life and he never tires of those images. Thank goodness that Mom made those precious photo albums, pictures of young sweethearts pasted on the black pages of old folios, with captions hand-written in white ink. There, the dates never change, the wrinkles never set in, and the smiles never fade. Dad has only loved once, and he finds her there, every day.

Saturday, February 22, 2014

Bacon and Eggs and Memories with Daddy

Classic breakfast: Bacon, eggs, and toast!
Photo by Pam Stephan
Dad was the family's breakfast chef. Mom didn't like to get up early, and she never took us to school. That suited Dad fine, as he got up early to go to work anyway. He'd knock on our bedroom doors to wake us up, then head for the stove.

Rewind in Time:
My Dad and his brother grew up in a house where their father did the breakfast cooking while the mother got ready for her job at Williamson Dickie's clothing factory in Ft. Worth. In their family, breakfast was always a hot, cooked meal. Breakfast was never pastries or cold cereal or donuts. No sir! Real Men grew up on bacon and eggs and Mrs. Baird's white bread. My grandpa used a cast-iron skillet and most likely did his frying on a gas stove. In the early 1920's, as newlyweds, Dad's parents had joined a group of migrant cotton pickers. They signed on as the cooks for the crew, so they lived with the chuck wagon and provided meals for all the workers, moving from job to job as the crop was harvested. Grandpa made biscuits and gravy and Grannie fried bacon and eggs for about 25 pickers, a boss, and themselves. Coffee was always supplied with breakfast. It was hard work, but they had grown up on dairy farms and were used to long days in the outdoors. When the Great Depression hit, and cotton crops failed to do well, they moved to the city with their two small boys. Grandpa became a mechanic and Grannie became a seamstress. Dad and  his big brother attended school and found jobs in the city, in the years leading up to World War Two.

Dad, age 34, on a trip to Disneyland
Photo by Mary Simons
Fast Forward: My Dad comes home from WW2 and marries the girl who lived 2 blocks away. 10 years later, I am born. Once I graduate from baby food, my Dad introduces me to The Real Breakfast. This becomes the breakfast we kids eat most of the time until we get to senior high school.

Making Bacon and Eggs
When Dad made his school-age daughters The Real Breakfast, he made it the same way his father did. He put two slices of toast in the toaster - or refrigerator biscuits in the oven - and got those started. Then he warmed up the cast-iron skillet while he lined up the bacon and eggs and milk on the counter top. First, he cooked the bacon, keeping all the grease in the skillet and draining the bacon itself on paper towels. As those cooled, he would crack a pair of eggs and slide those into the bacon grease. Using a metal spatula, he would carefully splash a bit of hot grease over the eggs and cook them until done. When everything was ready, he put 2 slices of bacon, 2 eggs, and 2 pieces of toast on each plate and invited us to "dig in!" Dad did this for us faithfully for many years, both at home and on vacation.

Turn-About Time
Now Dad is 88, has dementia, and lives with me. After he retired and he and my mother started traveling around, they ate out for most meals, including breakfast. After Mom passed on and Dad come to live with me, he still wanted to eat out. I usually take him out for his favorite breakfast. But he if he is unwell or if it is Sunday morning, we dine in. Now I have taken up the mantle of Breakfast Chef. My husband helps, but some days it is just Dad and I. We head for the kitchen, I pour him some coffee and bring in the newspaper. While he reads, I get out the eggs, milk, bacon and toast. Now the meal has been updated: turkey bacon instead of pork, whole wheat bread instead of white, fewer eggs, and no bacon grease! Coffee is decaffeinated these days - thanks to the cardiologist - and is drip grind instead of percolated. When all is ready, I bring the loaded plates to the table, say the blessing and we "dig in!"

Wednesday, February 19, 2014

Humble Tasks: Footwashing

Dad gets a pedicure from me!
Photo by Karl Stephan
If Dad could see his feet, he would wash them, and if he could bend close enough to his toes, I am sure he would trim his nails. However, he has macular degeneration and a little arthritis, so getting down to his feet is not practical. After his feet had gone untended for a while they began to hurt. Dad seldom complains, so when he did gripe about his feet, I took a look and wasn't happy with how they looked, or how they smelled.

As I considered what to do about those feet, this Bible verse came to mind:

"Live in harmony with one another; do not be haughty (snobbish, high-minded, exclusive), but readily adjust yourself to [people, things] and give yourselves to humble tasks." Romans 12:16 

In most cases, doing a pedicure might be a pleasant task. But Dad has always had a challenge with his toenails. These are thick nails, ingrown in places, and infected by fungus. Regular clippers won't begin to do the job. Imagination and lots of patience and empathy would be required. This would be a Humble Task for me to do.

I made up a foot soak in a large tub and got Dad to slip his feet into:
  • half a gallon of warm water
  • two capfuls of Listerine mouthwash
  • one capful of white vinegar 
He soaked his feet about 15 minutes and then I sat on a stool while he rested one foot at a time in my towel-draped lap. I must say that the Listerine and vinegar took care of foot and toe odors! A gentle rub with a washrag got rid of dry and flaky skin around the heel and sides of each foot. I gently used a curett nail cleaner around each nail and regular clippers where they would fit. Where nail were too thick, I used a PediPaws grinder to reduce the volume. I know - that product is meant for dogs, but it works just fine for this job too! Once the very thick nails were closer to normal thickness, it was easy to clip them. I passed up the ingrown nails, intending to find a podiatrist to work on those. 

I won't be noble about this and say that I felt saintly or selfless while doing this task. But it did get me to thinking about Dad's feet.

These feet have been many miles. They started out in a small town in Oklahoma, before the Great Depression. They took a small boy to school in Ft. Worth, Texas once the family moved south to find work. When that boy became a teenager, his feet took him all around the neighborhood as he threw newspapers, played touch football, baseball, and walked down to the icehouse and back for his mother. In 1943, these feet got on board a ship that sailed into the South Pacific with a new unit of Seabees who held a supply and refueling base during World War II. Back in Texas after the war, he walked many miles with road survey crews and while doing construction. After going to college and getting married, those feet faithfully went to work each day. When his kids were born, he walked with them, taught them to ride bikes and drive cars. In retirement, Dad and Mom traveled all over the country, walking around seeing the sights in every state. And these feet helped carry her ashes home after she passed away eight years ago. Dad has since traveled with us on vacation, strolled the beach on the Texas coast, walked around my neighborhood with the dogs, and pushed a cart around our local grocery store. I suppose these feet have walked around the world, so to speak.

Once the pedicure was over and I let Dad put some clean socks on, he thanked me. He slipped on his shoes and took the dogs out to walk in the yard while I cleaned up my tools and the foot bath tub. Since then, I have washed Dad's feet many times and trimmed his toenails. Perhaps he did the same for me when I was a baby. I'm just glad to be able to do something, no matter how humble, to keep him going!

Wednesday, February 12, 2014

Two Bad Weeks: Falls, Flu, and a Funeral

Dad plays dominoes with me even while he's in the hospital!
Photo by Pam Stephan
 haven't been adding to this blog recently, because we all got very distracted with health issues. None of it was enjoyable, and while I moaned and complained about it, my husband kept saying, "Just think of the blog material you'll get out of this!" That should have made me feel a little better, but it didn't, at the time. 

Sometimes bad things happen all at once and other times bad stuff just keeps happening, one thing after another, until you want to jump off the planet and get a cosmic break from it all.  We just survived two weeks of a series of hospital visits, falls, flus, and a funeral. I hope this year gets better, because it has started out very badly.

Fall #1 -Headbang Daddio Meets Concrete Sidewalk
Our first bad week got started on a Monday. Normally there is nothing particularly hazardous about Monday, but as we were walking to the cafe for Dad's favorite breakfast, he had a fall. His head met the concrete sidewalk before I could help him. He left a bloodstain on it that would make passing pedestrians wonder who had a fistfight right there. We skipped breakfast and went to the ER, then got stuck in the hospital overnight.

Fall #2 - Flush, Fall, and a New Friend
On Thursday of our first bad week, Margaret the home health nurse came over to check on Dad. As we went over his health history, he went to the bathroom, flushed, and fall on the floor with a thump! Both of us got him back up and then Dad and I packed a bag for another ER visit. Alas, we had to stay overnight in the hospital again, but got better treatment this time.

More Flu For Everybody!
While in the hospital, Dad had some stomach flu symptoms. A day after we came home, I woke up with the same rotten flu. My husband took care of both of us, then as soon as I recovered, he came down with it. But for him, we had to call an ambulance because he nearly passed out and he appeared to be having a heart attack. All three of us went back to the ER, this time for only three hours. We should get a family discount, don't you think?

A Grand Lady's Funeral
My mother's sister, Aunt Oveta, passed away and her funeral was held the day after our last ER trip. Since we were all still recovering, nobody could attend. I hated to miss this event, since she was the aunt I got to see the most while growing up. She lived to be 91 and passed away among family. God rest you, Aunt Veta - you are reunited with Uncle Howard now. 

And We Are Still Here!
After a bad two weeks, we are busy having home healthcare, physical therapy, and follow-up doctor visits. Dad is a bit more stable, though he appears wobbly once in a while. We haven't been to the senior centers since all this started, but we still play dominoes at home to keep in practice. The dogs love having us around more, so they are happy. As Dad likes to say, "We don't want to quit yet!"

Tuesday, January 21, 2014

Doing The Weekly Dementia Pill Drill

Morning Pills and Evening Pills
Photo by Pam Stephan
Dad takes pills - 10 pills every day - as part of his daily routine. Sometimes he balks about taking them, but most of the time he just knocks them back five at a time with a slug of coffee. I feel fortunate as a dementia caregiver, because we haven't gotten to the point where he can't cope with taking more than one pill at a time.

My job is to keep track of ordering refills and to load his morning and evening doses. The medications are prescribed by different doctors and come from a local, as well as a mail-order pharmacy. 

Every time we see a doctor or a dentist, I take along a medication list. The list includes the names of all medications as well as the dosage. Below the list I have a table that shows what time of day these are taken. If we have to go to the Emergency Room, I just scoop all the medications into a small suitcase and bring them along. The medical staff always likes to see all the information they can get.

When Dad was having trouble sleeping, I looked up his newest prescription to see if it could be causing him problems. Side effects are always possible, and since any change in his medications could create a new challenge, I try to stay informed. When I can't solve a medication problem on my own, I ask the doctor. Being a patient advocate comes with the territory!

Good questions to ask are:
  • What is the best time of day to take this medication?
  • Should this be taken with food?
  • Will this pill be compatible with Dad's other pills?
  • Can we get this in a generic version, to save money?
  • What should we do if he misses a dose?
  • What are the most common side effects?

For memory he takes Namenda and Razadyne. He has atrial fibrillation, so he's got a fancy blood thinner to prevent stroke. There are pills for allergies and asthma, for high blood pressure. And he also takes a generic form of Zoloft for mood. Mom passed away 8 years ago and Dad still misses her daily. 

I load Dad's pill bottles a week in advance and sort them into Morning and Evening. He always takes pills right after a meal. I've learned to give him the pills only after he has finished eating, because he sometimes mistakes them for candy and chews them! When that happens, he spits them out, to get rid of that bitter taste. That is 5 wasted pills. 

One day, I handed Dad his Morning pills after breakfast. He carefully sorted through them and picked out the pink ones, giving them to me and saying, "Here, have some of these goodies!" While I was touched that he wanted to share, I showed him that I had my own pills to take. He consented to take the pink pills, and we went on to have another good day together.

Wednesday, January 15, 2014

Santa Sneaks up on Dad

Dad doesn't realize that Santa is coming to visit, until he hears a strange grinding noise. Indeed, Dad wasn't aware that Christmas was imminent, even though the tree was decorated and lights were up inside and out. Brightly wrapped packages were nearby and Christmas music was playing, but it didn't make any difference.

Holidays are different, when dementia is in the house.

Monday, January 13, 2014

Peace and Contentment in the Domino Zone

Dad (at right) plays 42 with other seniors.
Photo by Pam Stephan
At our house, we have a table that is devoted to dominoes. It gets used daily. When my husband comes home from work and I need a break from caregiving so I can make supper, my menfolk play dominoes. After supper, if there's nothing great on TV, the three of us play dominos. Sometimes we may watch half a hour of headline news and then play another match before doing our evening wind-down routines. You get the idea: we play dominoes all the time.

We have a good friend who comes over once or twice a week to be a domino partner, so we can play the more challenging game of 42. It involves trumps, suites, strategy and teamwork. Dad is a master of this game as well as Straight Double 6 dominoes. 

Dad and I go to three different senior centers weekly, where we get lunch and - you guessed it - dominoes! If we don't get a foursome, we might play Moon, a three- handed variation on 42. and if we arrive too late to join in a group, we just play a two person game of regular dominoes. We have tried, but it is a rare day at our house that Dad says he is tired of playing the game. Perhaps he dreams of "rattling dem bones!"

When Dad is at the domino table, regardless of whether or not he's winning, that's when he is at his best. He knows this game well, he feels confident, and he plays to win. Always! When Dad is on a roll during a game, his mood is one of contentment and quiet happiness. The years fall away from his face, that confused "where am I?" expression vanishes, he sometimes chuckles and makes jokes. He feels competent, and having dementia doesn't hold him back at this game - most of the time. That's when I feel about 8 years old and my father seems to be only 38, strong, healthy, and in his prime.

So one evening as we were playing and chatting, Dad got into that Zone where he feels content and secure. As he laid another domino on the board, he remarked, "I don't know where we are, or how we got together here, but I sure am glad we did." His voice was warm and happy, he was smiling.

What he said expressed a lot to me. "I think The Man Upstairs* had a lot to do with it," I replied.

"I think you've got that right," he answered, then said, "Gimme 10."

*the Man Upstairs is how Dad refers to God

Sunday, January 5, 2014

Road Man: Going For A Ride With Dad

Dad goes for a ride.
Photo by Pam Stephan
Dad knows roads. His working life was full of surveying, building, designing, and traveling down roads and highways. He went to college after World War II on the G.I. bill, determined to become a civil engineer, a dream he was able to realize.

My father worked for the Texas Highway Department for 25 years. He worked his way up the hierarchy and before I got to high school, he was leading a design team.

Once in a while, my mother would drop me off at Dad's office. He would take me back to a room full of men bending over drafting tables, working on huge sheets of paper. Rolls of plans stood in a box or lolled, lying half open, on top of drafting tools. A monstrous mechanical calculator that made a sound like a hail of metal stood brooding in a corner. Drafting lamps angled askew when they were not in use. T-squares, as long as I was tall, rested across the mighty tables upon which penciled lines were shaped, later to become interstate highways rising into the air.

On Sunday afternoons, my father would often say, "Let's go for a ride!" My parents, my little sister, and me would slide onto the big green seats of the 1955 Oldsmobile, roll down the windows, and get comfortable. We knew what Dad really meant by his invitation. So we'd sit back and get settled while Dad would drive. He never used a map - all the roads he worked on were in his head. We would wind up at a road construction site out in the country, a road that he had helped design, so he could do a visual check on the progress. Mom might pack a picnic in a green wicker basket, so while Dad strolled around the work site we would have a snack. After he had toured the site, he might drive us  to other notable places such as Prairie Dog Town (back then, it was just a farmer's field full of these critters) or the zoo (it was free) or the Trinity Park Duck Pond (bring your own bread scraps). 

In November, when pecan trees were loaded with ripening nuts, he would drive us along a country road and find a tree on the easement. He kept a rope in the trunk, along with a brick. The brick provided a weight that he used to sling that rope over a branch, which he then shook, causing a rain of pecans. Down on our knees, we would pick the brown beauties and collect them in a brown paper bag. Back home, we would be put to work shelling those beauties and later we had them in pie. 

These days, Dad rides while I drive him around. If he is having the blues or feels frustrated or bored, going for a ride usually helps him. Sometimes we will actually do an errand or take the dogs for a walk in the nearby park. If pecans are in season, you can be sure we will pick up some. He loves going on long drives and will ask, once in a while, if I need a break from driving. I've never taken him up on his offer to drive. Once we are in the car and on the road, he likes to comment on the weather, the state of the road, the number of overpasses, other vehicles along the way. I might come up with a story for him from our drives when I was a child - these he always enjoys. The highway drives are his favorite. He relaxes to the sound of the road, the wheels going, rain or wind, swing music or classical tunes on the radio. If the drive is really long, he's been known to take a nap. 

When Dad and go for a ride, I know that I have precious cargo on board. His safety, his happiness, and his intact memories of road trips are riding along with us. He - not my mother - taught me to drive and this is one way we can be together. Dementia has kept my father from driving for some years now, but in his heart he is always the road man, with all the maps in his head.