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.

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 ...