"MISSED APPOINTMENT"

“Rebuke not an elder, but entreat him as a father; and the younger men as brethren; the elder women as mothers; the younger as sisters, with all purity." (I Timothy 5:1-2)

This morning, I was talking to a friend whose elderly father has many health problems and is in the early stages of dementia. How well I understand what my friend is going through. I’m pretty much a political conservative, but I will admit that when it comes to funding for the elderly, programs for the elderly, etc., I guess I’m pretty liberal. My father suffered from Alzheimer’s Disease for several years prior to his death in mid-2000. At around the same time, my mother was battling bone cancer. She died only seven weeks after my father did. During their last couple of years, my sister and I struggled to find available help for them. We DID manage to get a home health aide into their home for a couple of days a week, but we found that there was surprisingly little help available. Frankly, things are worse today. I’ve heard some people boast, “I’d NEVER put one of my parents in a nursing home!” If your parent did not know who they were, where they were, was completely incontinent, and was a danger to themself and others, I think you’d feel differently! I have told my own kids that if I ever get like that, they should not feel guilty about any steps they’d have to take. This morning’s conversation made me think of a piece I wrote almost ten years ago called “Missed Appointment”. I intended it to be either the first chapter of a book or a short story. Admittedly it needs editing. But I wanted to share it with you. If someone you know is going through the heartache of trying to care for a parent with dimentia, I hope this will give you an idea of what they’re going through. Here is “Missed Appointment”:

I don’t remember the date, but I will never forget the day. It was July of 1999. It was Thursday. This was my second drive of the week from Framingham to Canton. I seldom took the highway to Canton. I don’t like highway driving. The scenic and forested back roads made the trip so pleasant. Tuesday had gone well. It shouldn’t have. Tuesday’s weather had been stifling hot. I didn’t think Daddy would ever let me walk him out of the house into such sweltering heat. The advanced Alzheimer’s Disease had seemingly turned my formerly overconfident and authoritarian father into a confused little boy. I’d heard the horror stories of others who’d tried to take him to various medical appointments only to have him trembling and yelling in fear
of the stairs. My parents’ home has stairs, lots of stairs. I’ll share more about that later. Tuesday went well. Daddy had his pacemaker checked out at the Norwood Hospital. He followed me and cooperated like a dutiful child. The role reversal we’d done was incredible. Mama was so relieved that the pacemaker check had gone well.

I was worried about this second trip of the week. At our church’s Wednesday evening prayer meeting, I’d prayed my heart out for a successful Thursday appointment. This was an early morning appointment. Daddy never liked getting up early. This was a very important appointment. My father had to be evaluated by his neurologist. The temporary guardianship that named my mother and me as his guardians had expired. Mama never had a Power of Attorney on Daddy. It was too late to obtain that now. Daddy would soon need to be placed in a nursing home. That placement could not be made without the legal guardianship in place.

“Oh God,” I prayed, driving along Edge Hill Road in Sharon, “I know anything can happen today. Please help me. Please give me Your wisdom. Please give me Your strength. I can’t do this without You.”

There was an uneasy feeling, a fearful feeling in the pit of my stomach as I unlocked the garage door and let myself into the basement of my parents’ oversized Cape Cod style house. Trying to muster courage and confidence, I climbed the stairway to the first floor. I inherited my tendency toward worry and pessimism from Mama. She was obviously tense and worried on that Thursday morning.

“I just hope I can get him up,” she said nervously, “he won’t understand. He’s usually in bed till eleven.”

“C’mon Gene, “ I heard her say to him from the master bedroom. Then, I heard my father’s awful groaning.

“Uh, uh, uh, uh, uh ...” he repeated methodically, loudly, and annoyingly all the way to the bathroom. Then to the kitchen.

“Uh, uh, uh, uh, uh ...” He hardly seemed to notice me.

My mother tried to talk to him and treat him as though everything was perfectly normal, the way things had been twenty years earlier. She served him a muffin. I don’t think this was a usual breakfast food for him.

“Ho, ho, ho, ho, ho ...” he repeated like a stuck electronic alarm. She looked so pained.

“Gene, let’s take the pills,” she suggested. My father was on so many medications, I was amazed she could keep track of all of them. He took about half of them. Considering his level of confusion and dementia, that was not bad.

Now it was time to get him up out of the chair and head off to the appointment. I don’t think I’ve ever seen the simple procedure of rising up out of a wooden kitchen chair become such a complicated affair. He yelled and contorted into various positions, but finally he was calm and passively walking with us toward the cellar door and the stairway. With every step toward the door I could sense my mother’s fear and worry. I think Daddy sensed it, too. At the doorway he suddenly balked and became completely rigid.

“Uh, uh, uh, uh, uh ...” It had started again.

“Dad”, I announced calmly, “We going on a doctor’s appointment just like we did the other day; just like the other day. It’s no big deal. Okay?”

“Okay,” he calmly repeated.

“Now,” I continued, “You need to just let me place your hand on the bannister and we’ll walk slowly down the stairs, just like we did the other day.”

Suddenly, he growled, became very rigid, and yelled out in anger, “Ahhhh....” We must have spent five minutes at the top of that stairway. Ours was not a mushy, huggy, lovey family, so my next admonition to him was unusual. I deliberately spoke softly, almost in a whisper.

“Now, Dad, I love you. Do you know that? I love you,” I looked him in the eye. “We have to go to this doctor’s appointment in Norwood today. I will walk you down the stairs. I absolutely will not let you fall. Don’t you trust me? Please, you can trust me. I won’t let you fall. Please trust me. Please let me walk you down the stairs.”

It was no use. Again, the growling, the yelling, and the rigidity. My mother began hysterically weeping.

“God help us, God help us,” she sobbed.

I got an idea. “Maybe we should take him out the back door,” I offered. “There are fewer stairs. Maybe we could do it.”

I walked Daddy back into the large kitchen and to the back door. Here, he would have to descend five smooth concrete stairs, walk down a concrete walkway, and descend five cobblestone and cement stairs that he had built some forty years earlier. There was a lot of fear and yelling on my father’s part, but I walked him down the concrete stairs and down the concrete walk. How hopeful I felt!

Suddenly, he became completely rigid again. He would not walk on the cobblestone and cement stairs.

“Uh, uh, uh, uh, uh ...” the nightmare was raging all over again. Two or three minutes went by. There was no way I was going to get him down those stairs. Suddenly I panicked! What if I could not get him to go back up the concrete stairs and into the kitchen? It took some effort and a couple of minutes, but I did get him back into the kitchen.

My mother was devastated. “I’ll have to call and cancel the appointment,” she lamented. Just give me one more chance I pleaded.

“Wha, wha, wha, wha ....” my father stammered.

I spoke up. “What is this all about? Where are we going? Is that what you want to know?” Daddy surprised me.

“Yeah.” he said matter-of-factly.

I explained about a doctor’s appointment in Norwood. “Will you go with us now? Can we take you to Norwood?”

“Okay.” he said, pleasantly.

I was elated! We would take him to the appointment after all! We reached the cellar door and the stairway. To my shock, it all started up again! Then, over and over again, we walked from the kitchen to the cellar door, and repeated the devastating scene.

Mama sobbed and yelled, “It’s all that Peter’s fault!”

Peter was our attorney.

“If he hadn’t let that guardianship expire. It’s all his fault!”

“Now that’s not right either!” I angrily snapped at her. I felt guilty that I’d spoken to her in that manner.

My father stood in the short hallway leading to the living room. He pounded the light green plaster walls yelling, “Godd___n it! Godd___n it!” I hadn’t seen such an outburst of anger from him in years. Frankly, it was very frightening. We walked him into the kitchen and sat him down. Mama went into my sister’s bedroom, and called Dr. Niles. We could hear her trembling voice as she explained that there was no way we could get Daddy to his appointment. He was agitated. He fidgeted. He knew he had done something wrong. He knew we were not happy with him. But in his dementia there was no way he could comprehend it.

“It’s been rescheduled,” Mama sadly told me the date of the new appointment. “I don’t think we’ll be able to take him then, either.” With the help of a family friend, we were able to get Daddy to the neurologist’s appointment a couple of weeks later.

“Crazy ... crazy ... crazy ...” my father repeated. “This is crazy!” he cried out. He looked intently at my mother. “You’re crazy!” he told her.

Have you ever simultaneously felt completely numb emotionally and sad and hopeless and helpless? As I started up my Oldsmobile station wagon and drove down the hill at Prospect Street Canton, that’s how I felt. I will never forget that day.