Double Dementia, Double Heartache



By ExoticHippieQueen ©2011

Where sky and earth meet at the horizon, an imperceptible sliver of reality exists, a dimension unknown to sane men, and fearfully perceived only by those who hang on to the last fragment of themselves in the twilight zone of ebbing sanity known as dementia………..

The menacing sign clearly stated WELCOME TO HELL but I must have whizzed by it as it hung unnoticed from the corner of my minds’ eye. My parents, in their late 70’s, had in recent months, begun their ascent into the maladies of old age. Mom was suffering from dizziness, losing her balance along with some memory loss. Dad had what appeared to be the beginning of Alzheimer’s, and was diagnosed as such, but Mom was not able to accept that diagnosis for the man she loved so well and for so long. She explained his memory lapses as “a couple of small strokes”. With growing concern for their safety, I began making the 80 mile roundtrip to their home more frequently. Things were definitely taking a downslide as I scanned their first floor. A notice laying opened and forgotten on her kitchen table stated that a lien was being placed against their home for unpaid taxes. Moms’ checkbook was a senseless tangle of scribbles and jumbled numbers. A disturbing amount of unopened mail blanketed the dining room table, and placed in perfect alignment down the kitchen counter were a half dozen bowls filled with dry cereal, uneaten. I later learned that Mom had decided that Dad could help himself to cereal in the morning while she slept in……………all day………..and all night…………..and all day…………..and all night. Dad was literally on his own, wandering the house aimlessly, having lost his rhythm of night and day, purpose and passion. Mom was upstairs in bed, answering me weakly as I called for her and climbed the stairs. As I entered the bedroom, my heart began to pound. Laying in an awkward position precariously close to the edge of the bed, head cradled in one arm, caked blood covered part of her forehead, into her hair, and down one side of her face. She displayed no sign of pain or alarm………..just gentle, mindless drifting, her eyes closed in denial. She had fallen into an iron railing the day before.

At that precise moment, I felt the heaviness in the pit of my stomach, pulling me down into that hollow ache where I knew nothing would ever be the same again. And it wasn’t…………

After a brief hospital stay where Mom was stitched, patched and treated for depression, the difficult decision was made to move them to our home. With dual diagnosises, Mom: multi-infarct dementia, and Dad: Alzheimer’s, they no longer would be able to stay in their home alone. My dining room would become their bedroom, as we were full-up with 3 kids still living at home. Fortunately, my dining room had pocket doors and an attached bathroom allowing them their privacy. The day of the move, we left Mom and Dad sleeping and made the long trip to pack up their belongings. When we returned and walked into the house, they were still in bed, despite the time of day, mid afternoon. Mom was laying quietly next to dad and said, “He won’t wake up”. I ran to his side of the bed and checked for signs of breathing. He was. Yet he wouldn’t wake up. I lifted his arm and let go…………and to all of our surprise and confusion, his arm remained in the air. We called his name, spoke to him, without any response. 911. On the way to the hospital, he was given oxygen, and by the time we arrived in emergency, he was fully awake and relatively coherent. While we were relieved, we were also perplexed by this bizarre event. The only explanation offered was that he was in a psychotic/physiological state that can occur with dementia, and compounded by a lack of oxygen. Go figure. That welcome sign that I missed? It was blowing in the wind right about then, trying to get my attention.

Once Mom and Dad were settled in, and I had taken their home of 40 years apart and disbursed the contents, we tried to make some sense of what made no sense. Mom didn’t want to get out of bed, or apparently keep any clothes on (“why should I wear clothes….the human body is beautiful”!). She demanded ice cream for breakfast and much like a rebellious child, refused to go to adult daycare. Dad dressed himself in Mom’s clothes, completely unaware that he looked ridiculous. Always helpful, he cleaned my toilet with his toothbrush, dried dirty dishes, and drank mouthwash (well, it did have alcohol in it). At times, my always gentle Dad would become very irritable, intimidating, and even kind of scary, shouting at and threatening his grandchildren whom he loved dearly. .And always, always, Dad was still a car man. Owner of a Shell station for many years, a mechanic in the Seabee’s, the sight of every car that passed the house pushed a button in his brain which caused him to ask, “Is that a 4 or a 6”? (cylinder). He asked this same question so many times a day that, at times, I just had to go somewhere else in the house to retain my own sanity. Distraction with activities or a change of topic did not deter him from his single-minded pursuit of an answer. At his sister’s funeral, we followed the hearse. He was unaware of the situation, only asking if the hearse was a 4 or a 6.

One night, my husband and I awoke to the sound of the TV blasting, volume cranked on high, lights blazing against the wall of the stairway. It was 2 a.m. We slowly began ascending the stairs, bracing ourselves for what was always Unexpected Craziness. Mom and Dad came rushing to the staircase, Mom threw her arms out, sighing with relief, “Thank God you’re alive! We thought you were dead!” Neither of them had any idea of: 1. What time of day it was, 2. Where they were or 3. What they were supposed to be doing. So they ate an entire Entemann’s coffeecake and drank a pot of coffee just in case it might be morning. Back to bed. Tomorrow will be more of the same.

On a particularly frozen February morning, I left my parents at the kitchen sink, Mom washing dishes, Dad drying. I HAD to pick up their medications a few towns over so rather than take them out in such cold weather, I told them I’d be right back, to just stay put. I hurried through my errand as quickly as possible, worrying about them the entire trip. When I walked in the front door, Mom was sitting…alone…in the living room. “Where’s Dad?”, I asked. “He took a walk,” she answered. Yep. 12 degrees outside. She became upset by something he said and told him to “go take a walk.” And he did. Gone. Running out the front door, I tried calculating how long it had been since he had left, and how far he could have gone, but in what direction? And where? Once I had exhausted all efforts to find him on my own, I called the the police who alerted nearby towns that he was missing. Somewhere along the way, police dogs showed up, sniffing my closets…did they think I disposed of the man? Mom was only mildly worried, but I was remembering all of the newspaper articles about people with dementia who wandered off in winter weather, only to be discovered frozen to death from hypothermia. As it grew dark out, I continued praying for his safety. Finally a call came in that he was at a police station 30 miles away. He had been picked up on his way out of town by a hitchhiker until the driver began talking to him, and realized that his passenger was “not all there”. Dad had no identification in his wallet, so it had made his recovery far more difficult. He was safe. Chatting with the policemen when we arrived at the station to pick him up, he was his charming polite, and confused self.

Can we talk about the heartache? Dad was always trying to “escape,” a common characteristic of men with dementia. Women don’t seem to want to do that as much. Dad snatched hidden car keys quite a few times, once in the middle of the night. We heard the sound of the front door close, feet pounding down the soft wood steps of the front porch. Leaping out of bed, my husband and I ran to the window in our underwear to see Dad’s silhouette against the street light beating feet to the car in the driveway. The same winter that he ran away, Dad insisted over and over he needed to take a walk to find “home”, as he often did, so I bundled him up like a toddler, and we picked our way carefully over patches of ice and snow covering the sidewalk. A biting wind was blowing snowy grit into our faces, as we squinted against it on our trip to nowhere. My heart was aching as I gripped his arm to keep him upright. At the corner, we stopped ,and I looked into his face. He stared up, then down the street, so confused, frustrated, lost. The home he was searching for was gone. I bled for him. And cried for him. Many, many times. Watching someone you love lose their mind is so incredibly painful (and frightening) that there really are no words that man has invented to describe it.

After six months, I reluctantly placed them in the dementia unit of an assisted living facility, where Dad died a year later from a cerebral hemorrhage. Mom, now 91, has continued to live in facility care for the past 14 years. While she is still with us, her light is gone, and the vivacious, loving, “Myrt,” whom she once was has been replaced with a silent, unrecognizable, sad, old woman. She waits on the Lord to call her home..

My heart sends love to all of you who struggle in this war. May God bless you and give you strength and peace………………………..


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