Grace and Transfiguration

Nandina leaves and Fennel blossom

Turning Leaves As I age, change will come. To some, it looks like disease. I shall morph, and endure degradation. This process is from nature. Let us try not to fear it - not overmuch. Within my new colors, my true self adjusts. The fuel for my progress is Grace.

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

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

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

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

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

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

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

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

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

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.

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

Travel, Dementia, and Dogs

Toto the Wonder Dog warms Dad's lap.
Photo by Pam Stephan

When we travel with Dad, the dogs always travel with us. That means making reservations at dog-friendly hotels. La Quinta gets a lot of our business. We make a travel plan and the night before, we start packing. Bags are filled with clothes, pills, and electronics for the people. We bring snacks and sometimes drinks, in case we get stuck in traffic a while and need a distraction. Because Dad has memory loss, he has no sense of how long we've been sitting still on the interstate, and frustration can come on quickly. Food is a great distraction, when you can't play dominos. Oh yes, and we always bring a bag of dominos, score sheets and all.

A big plastic box is loaded with dog food, treats, toys, bowls, and first aid supplies. Dog blankets are stowed in the car and each pet wears her harness and leash, while I stuff my pockets with doggie poop bags. The dogs travel well and they've been along on our journeys ever since Dad has lived with us. There are just two dogs and they are lap-sized. Dad can't remember their names, so he calls his pet "DogDog" even though we call her Toto. She is a toy fox terrier with a calm temperament and a strong loyalty to Dad. Toto is about 14 years old and going strong. Her favorite sport is Ball Toss. My dog is named Pinky but she often gets called "YipDog" or "PiggyDog" or "Slim." She is a mix of toy fox terrier and chihuahua, a dog who was rescued from a puppy mill. Her favorite sport is Mealtime. Okay, well, she is overweight. 

My sister gave Toto to Dad 7 years ago, about a year after Mom died. Dad had been lonely, in his house on his own, but Toto changed that for the better. He had been living with dementia for a while, Mom had been his caregiver. My father has always had pets, usually dogs. But he has also had cats, a mockingbird with a broken wing, and a pair of baby possums. Dogs in the house were a constant part of our life and Toto was a natural fit.

Dogs don't care if a person has dementia. They aren't judgmental about that. Dogs can live "in the moment" very well. While they like routines, these dogs have been very tolerant of changes. Every morning, Dad gets dressed and takes Toto out to the yard for her morning break. They come in and watch TV news together. After breakfast, she hopes he'll give her a scrap of sausage, and she usually gets it. We take walks in the park, visit PetSmart, and do doggie baths together. Dad gets a sense of accomplishment and joy from caring for the dogs. Sometimes he calls them "the kids!" 

Seven years ago, when Dad and Toto moved in with us, the dog helped him navigate this house. She helped him learn the paths from his room to the door, to the kitchen, and to the garage. Petting her has lowered Dad's blood pressure. Feeding her is important to him. Keeping her healthy with regular vet visits and proper diet are things he's willing to help with. Toto might as well be a dementia therapy dog. She has become an important part of Dad's life as well as part of our family.

Now if we could only teach her how to shuffle dominoes ...

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?