Family secrets hold an uncertain power as long as they are kept secret. Fortunately there are places to share unpleasant truths, like blogs. When meeting with new medical people it is important to demonstrate that we (the children of not always wonderful parents) have sorted out what it takes to be caring human beings, whether or not our parents are difficult. Our goal is to carry out the instructions of health care professionals to the best of our ability in compliance with our parents’ wishes. Translating the Dead Sea Scrolls might be less complicated.
I haven’t discussed our sad family history with their medical providers. The body and psyche, though closely linked in my mind, are not always lumped together in Western medicine. It may no longer matter that Mom has forgotten booze was her best friend or that Dad is left with two basic modes of communicating;
1) Letting someone know what he wants and
2) Throwing a tantrum when it doesn’t happen.
Recently my sister and I accompanied Dad to meet with a health care worker and a doctor. Somehow Dad managed to replace the good batteries in his hearing aids with dead ones so he couldn’t hear a word we were all saying. Frankly, I thought it was lucky because I needed to ask the Dr. difficult questions about how to care for him, which was painful with him there. But the Dr. pointed out that doing so lacked respect. She got up from her desk and stood in front of him then repeated our questions loudly while leaning in towards him. She smiled often, sincerely trying to put him at ease. I hoped it would work. Unfortunately Dad’s face quickly morphed from annoyed and confused to beady-eyed furious. I have considerable experience reading the nuances of his temper from dodging his swinging arm since I was three. That look meant he didn’t like what was going on, but she hadn’t quite pissed him off enough to get smacked. Dad never apologizes for saying horrible things in fits of rage nor did he before dementia set in. He acts like he has anger rights. He appears to me as a man standing on the thin crust of a lava flow that he also has the power to direct.
He isn’t the kind of guy who jumps up for a hug and I’m certain he would prefer that doctors behave like know-it-all authorities. You know, hands clasped on the desk, serious delivery of the facts while staring sternly over half-glasses, preferably a white male because they always know best (his request, not my opinion, just to say). I’m pretty sure that felicity with the kids in the doc’s office is at the bottom of his list. I quickly put my hand over his when I saw the steam rising around his collar, something I never do. It was a knee jerk reaction to the circumstances, like throwing a lucky horseshoe on the track of a freight train of rage in an attempt to derail it. I couldn’t look at my sister because I knew her eyes popped wide open with the question “When the hell did you start holding hands with Dad?”
I wasn’t pretending to care, obviously I do or I wouldn’t have been there, but I didn’t take my hand off his because he was slowly balling it into a fist. I gently pressed his knotted hand onto the table to let him know that retaliating was not an option. My sister and I showed up to demonstrate that our parents are being cared for and that they have the means to stay in their home. As their new guardians, walking them through the labyrinth of modern medicine because they can no longer manage it themselves requires a gallant effort. I heaved a sigh of relief when someone in the room said “You really are doing a great job.”
Dad griped for days and demanded bitterly, “Who was that woman who made fun of me?” and “Why did she stand there and yell at me?” Selective memory is typical of Alzheimer’s. He remembered being insulted even though it didn’t match the intentions of anyone in the office. I’ve noticed with both my parents that strong emotion has the power to embed memories, but the perception of incidents is often closer to science fiction. In his version he referred to me as “the girl” and had no memory of my sister being present. I suppose if I want him to remember me I’ll really have to piss him off.
I told the Dr. on the phone that Dad did not feel good about the visit because she asked me. When she quickly replied, “I knew he didn’t feel respected!” I let it go. Being right isn’t always smart. I respected her for trying though.
I’ve considered whether Dad’s bad behavior is a reason not to help him through this difficult stage of life, but my heart is sure I need to and I don’t have any regrets. In writing about this aspect of his character I’m leaving out many good qualities, although engaging with rage takes a toll. Top of my list for staying sane is laughing with friends until my sides hurt. My brother and sister can make me howl and I could not do this without them.
This is a link to a guy who makes millions of people smile. I’m sure Mom would love to dance with him.
This is the Photoshop retouching job I did this week for Lively Architects in Honolulu. The top photo was taken with a phone. The bottom photo is how it could look.
Good luck Mark!
Mark Lively, AIA, LEED AP
119 Merchant St # 403 Honolulu, HI 96813
Tel (808) 523-0707
Cell (808) 226-0707