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.

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!"

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!

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.

Doing a Little Minor Surgery

First Aid Supplies came in handy one day.
Photo by Pam Stephan

Dad and I were playing dominoes one afternoon when I looked down at his sleeve and saw a bloody spot. I calmly asked him about it. He said he wasn't hurting any, but may have "leaked" a little. My father is a pretty macho guy and not admitting to pain is a longstanding feature of his character. However, since he developed atrial fibrillation and is at some risk for stroke, he has to take a blood thinner - so when he starts bleeding, it can take a while before natural clotting takes place.

This was a triangular bloody spot about an inch long and half an inch wide, about halfway between the cuff and the elbow of his long sleeve. He offered to show me that "it was really nothing," so he rolled up his sleeve and there it was. A flap of skin had been sheared from his arm on two sides of a triangle. The skin, which was somewhat stiff and dry, was still attached along one long side of the avulsion, and blood and lymph was still weeping from the raw skin beneath. Ugh.

Now I know my father's habits pretty well. He had probably ignored the problem because it was covered by his sleeve, but now that it was clearly exposed, he would want to tear off the dead skin and let the wound "air itself" so it would heal. Keep in mind that he is 88 and that was how he was raised to treat wounds. Actually, he and his brother probably rubbed some sandlot dirt into their scratches to make things look more impressive. He didn't want any treatment for it. But he has one weak spot that I can always use - he loves personal attention.

I made a fuss over his wound and said I would clean it to make sure that no "bugs or germs got in there" and did any harm. So I assembled some first aid supplies:

• hydrogen peroxide
• cotton gauze
• Neosporin ointment
• tweezers
• nail scissors
• non-adhesive bandage roll

We started by cleaning the wound with peroxide. I warned him that it would sting, so naturally he didn't even flinch or blink. I soaked some gauze with peroxide and blotted the wound while I examined it for signs of infection or inflammation. The raw skin was unhappy but not puffy or much discolored. Then I got him to rest his arm on the table so he could hold it very, very still. Here's where the surgery got started. I used tweezers to lift the skin flap away from the wound and elevated it slightly, so it had a little strain on it. Then I carefully, slowly, neatly trimmed the dead skin flap off by using the nail scissors. The dead skin came cleanly away from the raw place (arm hairs and all) and it went to its eternal rest in the kitchen trash can. Here followed more peroxide blotting and then a coating of Neosporin to seal the surface.

Dad followed all this with interest, enjoying the concentrated attention he was getting. He chatted about his brother, the dogs, or whatever came into his head while this was all going on. I was grateful that he didn't squirm around.

We put a square of gauze over the open wound and Dad held it in place while I wound a length of non-adhesive bandage around the gauze and his arm. I really like this stuff - it won't pull on his long, long arm hairs and it can be reused when changing the gauze. That is, it can be used again if Dad doesn't discover it and rip it off, so the wound can "air!"

The bandage that we had on hand was blue. Dad's dog, Toto, recently split a dewclaw and had to have it worked on at the vet's office. We had been using the blue non-adhesive bandage on Toto's foot but it worked well for man and beast. Fortunately, neither the dog nor Dad required the bitter-tasting bandage that prevents chewing and biting by the patient!

Having completed our minor surgery, we resumed our domino game and I believe he beat me once again.

Changes and Transitions

Dad and I cross this bridge together.
Photo by Karl D. Stephan

I have stepped off of a cliff, or at least I feel like I have. It's not the first time that I've resigned from a job, but it is the first time I've quit because my personal life demanded more time than any professional duties.

Just before I started being my father's caregiver, I got a web-based job writing about breast cancer for About.com. I took on the task of writing this because I had gone through the whole breast cancer experience about 4 years earlier. For the record, I am an 11-year survivor. I spent 7 years and 7 months researching, writing, illustrating, and taking photos about breast cancer. It was a completely web-based job and it was a job that I could do from any place that I could hit the internet. Have laptop will travel.

About 5 months after starting that job, my father was told by his neurologist that he could no longer live alone. She also got right in his face and told him to stop driving, or else she would report him to the authorities! My mother had passed away one year before, and Dad had been living alone, eating 2 meals a day at a diner and a cafeteria, and mowing the lawn for fun. He also watched TV. Lots of TV - but most of it was like, The Weather Channel. Dad was on meds for high blood pressure, but he frequently forgot those, and sometimes passed out and fell. One time when I visited, he met us at the door with bruises on his forehead, elbow, and knee. Of course, he had no memory of how the bruises got there, and was unconcerned. He just wanted to visit with us and go hit the cafeteria!

My sister and I talked over the situation, and Dad agreed to try living with her. Four days later, he was back home. He also tried assisted living - also a four-day experiment. Next stop: my house, where he originally agreed to spend at least 2 months. I still have the paper he signed, agreeing to stay that long!  Seven years later, he's still here. Dogs and all. More on the dogs later, I promise.

Dad's dementia has progressed very slowly. It took a drop when he started having a heart problem - atrial fibrillation - about two years ago. He used to able to keep himself occupied around the house, he liked to read, watch TV, walk the dogs, and even took showers! 

Now he needs directed activities, has trouble reading, and cares less about television, unless it is specific programs. We tried having a hired companion once a week - but Dad actually remembered the guy and complained so strongly that we dropped the service.

So it is up to me - with lots of help and support from my husband - to keep Dad healthy, contented, occupied, safe, and on schedule. If he wakes up at 2:30am and wants to walk the dogs, its up to me to talk him down and get him back to sleep. I fill his daily med doses and make sure he takes the right pills at the right times, and gets refills in a timely manner, We keep healthy drinks around to prevent dehydration. I plan meals that he enjoys and can navigate even with low vision. Dad and I attend 3 different senior centers a week, we stay socially engaged. I keep his appointment calendar, steal his dirty clothes (and sneak clean ones back to him), and create small photo albums that cover areas of memory that help him. I'm busy. Did I mention that I give him haircuts too?

All that leads up to this: I've quit my job writing about breast cancer, and have stepped wholly into the world of  dementia caregiving. This is a role that I struggle with daily. But having Dad in my life is important enough to me that I decided to jump off that secure cliff  - the familiar world of being a working girl with a regular paycheck - into a more personal role. Dad is making this transition too, although he is aware of it only around the edges of his memory, he knows that I am there for him, every day, with every memory that he might want or need. That's what I am for now. That's my new mission.

Being a Cut-Up

Dad lets me give him a haircut at home.
Photo by Karl. D. Stephan

SpongeDad Haircut, or Getting More Than He Thought!

Dad loves personal attention (who doesn't?) and he is a bit of a tightwad when it comes to barbers. He is still shocked that a professional haircut costs more than $2.50, so if we visit Rudy the Barber, it's always my treat. 

My sister cuts her husband's hair, and for a while, she trimmed Dad too. So she showed me the electric clippers that they had - there were about four sets at Dad's house - I thought I'd give it a try and see how it went. My first challenge was his dirty hair. Like many folks with dementia, Dad isn't fond of baths or showers. But there are dry shampoos available, which just spray on, and those do a good enough job. 

I summoned my courage and told Dad I was setting up my Home Barbershop. His quick reply was, "Why don't ya just take me to the barbershop and let them work on me?" When he understood that they didn't do shampoos there, he agreed to be my client. He shucked off his shirt - a ritual in itself - and sat down so I could drape a towel over his shoulders. I warned him about how cold the spray-on shampoo would be, and off we went.

The dry shampoo leaves a deposit of cornstarch powder, but that makes it easy to trim his neck with the electric clippers. Once I had a base trim started, I brushed away the powder and picked up the scissors and comb. Now I have very little experience in cutting hair, so I go very, very slowly. Like, this one hair cut can take an hour. Over several years, I've learned to layer in a fairly reasonable way, so Dad doesn't look like he had a bowl thrown on his head and a razor run around the edges. He likes to look good, and I'd swear when he looks in the mirror and combs his hair, he does it as carefully as he did when he was 17 and competing for dates with young ladies. 

After some time, I was less happy with that dry shampoo, so I tried whipping up some foamy shampoo and washing his hair that way. That got his hair, head, shoulders, and collarbones very clean, especially during the rinse cycle. Rinsing was accomplished by pouring warm water over him and hoping for the best. At first, I felt bad about drowning his undershirt and I always got him a clean one.

Then the light dawned: I had a new opportunity here, for a sponge bath! As long as Dad would cooperate, I would routinely wet him down and sponge him off. This way, he got at least an upper body "bath" as well as a trim, clean undershirt, and new shirt. The combination of all these attentions resulted in good stuff for both of us. Dad came out feeling better, and smelling better. I came out with a sense of accomplishment and a new solution. Thus, SpongeDad Haircut!

Senior Game Day

Playing 42 - Dad is wearing the blue ballcap.
Photo by Pam Stephan

Today we went to the Senior Game Day at the City Recreation Center. All you have to do is to be 55 or over and show up with some food item to share. Nobody checks to see if you brought anything though, but several people attend regularly and bring the same item weekly. We always bring something different, just because we are different, I guess.

You see, most of these seniors may need walkers, or have knee replacements, or hearing aids, but their memory works well. They come in and head for their favorite game table, sit at their regular place next to their buddies, and play for all they're worth. Every week, every year, this is how they start their week. Dad's memory is - in his own words - "Shot!" He's been dealing with dementia (a word I hate with a special loathing) for at least 7 years and more. His short term and long term memory is faulty. The big exception in his case is: Dominoes.

No matter what else he is coping with, Dad can whup most anybody at Dominoes and is a keen partner at the venerable game of 42 (see the photo). I joke that he was born with the Double 5 in his mouth and cut his teeth on it. He's never cared to deny it.

We met up with a man named Micky - not his real name - who says that he has a faulty memory due to brain injury that he got in a car wreck. Despite this, our new friend is just as nuts about Dominoes as Dad is. He anticipates what other players will score and usually has his own "rock" ready when his turn arrives. Dad and he play with a rhythm born of long experience. I just about keep up with them, as well as keep the score pad updated. Micky appears to have an unlimited endurance for the game, and I wish we could meet up with him so Dad could have another person to keep company with. We think this man lives in a group home and his hours are rather regulated. But it would be wonderful if a guy with a brain injury and a guy with dementia wound up helping each other cope.

Just by playing Dominoes. It could happen. Couldn't it?