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.

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!

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.

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."

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.

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!

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 About.com, 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.