Ming Toy, Jenny & I commiserate almost everyday. Ming groaned one night on the phone, “You haven’t lived until you’ve changed your mother’s diaper. I never thought the words spread your legs would come out of my mouth while I was putting ointment on some chafed skin.” (Ming’s mother had had a stroke and she was dealing with round-the clock nurses at her parents’ Eastside condo. Her father had become increasingly cranky and dependent on Ming). Ming had migranes and was living on Imitrex and Xanax.
Jenny, on the other hand, was navigating long-distance, a day trip for her mother, knowing it had catastrophe written all over it. I didn’t know you could get kicked out of a senior center, but Jenny’s mother, Regina, managed to do just that – twice. Disruptive behavior during a sing-a-long of South Pacific and refusing to share bingo cards. This day trip was the third senior center for Regina and they were going to Atlantic City. Jenny didn’t trust her mother not to bring her grandmother’s pearls, promised to Jenny by Grammy Grace, to cash in for gambling chips. Jenny was developing an ulcer and couldn’t sleep without Ambien.
I felt very lucky, my mother “only” has very bad osteoarthritis and no cartilage in her shoulders or knees, so there is constant pain and constant moaning. I’m talking rock concert decibel moaning. Well, that’s how it sounds to me. In her sleep, in my sleep. Between prescription pain creams, pills and patches…I still couldn’t get any sleep. Remember, we live in a 450 square foot studio apartment. The Vicodin made her so tired during the day, even though I monitored it, so we finally agreed that super-duper 650 mg Tylenol was best. My dosage for Wellbutrin and Lorazepam had been increased.
Sometimes, I wondered if slipping her a Vicodin in her tapioca instead of Tylenol might be elder abuse. It just seemed a little too “Notorious”, the ex-Nazi Claude Raines slowly poisoning his heroic wife, Ingrid Bergman. I hated the idea of being the Claude Raines in our drama. The irony: All my college years with pot, diet pills and anti-anxiety pills, and never got busted. Now, recreational drugless decades later, I feared I could be busted for giving my mother a narcotic, even though she has a prescription for Vicodin and can take it up to four times a day. I religiously enter V on our calendar with the time and day I give it to her, aiming for once every ten days. I must admit, she is very brave and white knuckles it a lot. The Tylenol 650 mg just wasn’t cutting it. I was getting loopy from lack of sleep and longingly stared at the bottle of Vicodin, imagining that Visiting Nurse Services would bang on our door and take me in for elder abuse if I gave her the Vicodin when she wasn’t crying from pain. That was certainly not on my Vision Board! I realized I was so tired that if I was a POW, I would’ve given away all military secrets and end up on WikiLeaks.
After hours of thinking, maybe the ‘mushrooms’ I ate in college finally caught up with me and I would come down soon. Then finally falling asleep, I woke up screeching, “Stop it! You’re making me crazy with your moaning! It makes me depressed and nervous!” My mother felt bad, and I felt horrible as she tearfully said, “I feel like I’m a burden to you.”
So now I am on sleep deprivation. I have to spend an extra hour in the middle of the night cheering her up and reassuring her that she is not a burden. We reminisce about funny childhood foibles, like turning my hair green in a disastrous attempt at getting the red dye out.
Payback.
During my entire life, this saintly Jewish mother (remember “Mitzi Santiago” is for obvious reasons) always showed up. All those times I experienced rejections, disappointments and depression. How many hours did she log as my cheerleader when I struggled loosing pound after pound of weight loss? Her heartfelt praise for all my creative endeavors, even if it was only a single line in a junior high school production of “The Christmas Carol”. Standing by me with my mood swings, putting aside her own emotional pain of recognizing her depressive long-gone mother in me.
Cut to: The Present
My mother, in excruciating pain, understandably moans and explains for the umpteenth time, that she has a bad shoulder that is killing her. I don’t get any sleep and complain to her, then we both feel guilty…I can’t win. Living with a person who has chronic pain is a karmic lesson in patience, calmness and disappointment. Broken promises of outings, doctors’ appointments and shopping trips that never happen because her arthritic knees can’t walk up four small steps to the outside of our building. I was angry and frustrated because I had rearranged my schedule and entire life so she could get her needs taken care of first. My intentions have always been sincere and protective. OK, I get it…it’s “bone against bone, no cushion”….she’s inching towards 90 as she takes 10 minutes to cross the room on her way to the bathroom, canes in hand, her breathing heavy with the effort she bravely exerts. I’m trying to show empathy and compassionate support instead of rolling my eyes with impatience.
I tell myself as I am yawning, she needs to step up to the plate. I want her to run around with me to the flea market, the movies and Bloomies. Like before. I need to get out more. I want the old girl back.
Confession:
I finally gave my mother a Vicodin last night. I didn’t hide it in her tapioca, but simply suggested that maybe it might do her good. “Whatever you think is best.” The last time she had a Vicodin was two months ago. We both needed some sleep. A little V wouldn’t hurt. My karmic effect….Oh she slept alright. Right through the day and afternoon till the 5 o’clock news. I had to cancel therapy (well it gives me more to talk about later) and I have been on house arrest all day! Everything but the ankle bracelet. Total lockdown.
Payback’s a bitch. I guess my drug days are really over. So over. Dramamine makes me comatose. I hear Dionne Warwick. She’s singing the theme song from Patty Duke’s classic and iconic film of the 60s, “Valley of the Dolls”. Patty is strung out during most of the movie.
“Gotta get off, gonna have to get off from this ride.
Gotta get hold, gonna need to get hold of my pride…”
I quickly changed the music in my head to Adele :
“We could’ve had it all….
Rolling in the deep…”
I want the old girl back.
Living in a studio with my mother…I have no privacy. From the beginning 4 years ago I have taken refuge, talked on the phone and occasionally wrote with my laptop sitting on the medical shower chair I placed in front of Milo’s mat, next to the toilet. I added a “boyfriend pillow” (the irony is not lost on me). Notice the kitty litter box (used) and the glass of wine on the tub edge (half gone). How many crying/laughing/whispered phone conversations have I had with friends while buried in between the shower curtain as I sat on the edge of the tub? I kept encouraging myself with thoughts like some poor people in the world have a family of 10 in a home the size of my bathroom. For a few moments I looked around at my “office”, and felt like it was actually rather enterprising and creative. Now, 4 years later it has become a stale joke. How many times have I poked my head out of the bathroom to ask if my mother or Milo needed to come in. Sometimes I would sit on the toilet, head in hands, and tried to figure out my life or what happened to it. I’ve spent the better part of a week buying 5 different raised attached toilet seats from medical home supply stores..I had to explain to my mother several times that the landlord, Mr. Kaplan, didn’t provide medical home equipment. New York landlords do not provide high toilets. My mother is a saint….my mother is a saint…repeat 100 times…I must be more patient. This is the mother who took care of her grandmother, depressed mother, my father who had cancer for 10 years, a step-father who had Alzheimer’s for 10 yrs…it was her turn now. Tag, I’m it. It’s my karmic opportunity to repay her in some way for Everything she has done for me. Never let me down. When my father was dying when I was 10, he was 40, she hand made my annual original Halloween costume, a roaring 20s flapper that year. I always had birthday parties; ice skating, roller skating, picnics, movie matinees etc. The years she visited me in New York, it was orchestra seats for a Broadway show and dinner someplace fun. Friends were often included. My birthday was May 4th. She promised she would go out – she said dinner and a movie…that was a stretch I thought. Good thing I had back up as my mother just decided she didn’t feel like going out. Of course I argued, but mainly because I was angry she had gotten older and no longer had the umph, even for my birthday.
Mitzi Santiago, Caregiver Confidential 