Mitzi Santiago, Caregiver Confidential











{June 17, 2013}   Return to Valley of the Dolls

A Few VMing 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.

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{June 2, 2013}   A Room Without a View

My Corner OfficeLiving 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.

Mom & Milo



{May 13, 2013}   A Flight Plan of Sorts

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I’m a Caregiver  and  like Amelia Earhart, my flight plan in life has gone way off course. At times I feel lost, afraid I’ll crash and won’t be seen again.  There is nothing noble about me. Nada. Contrary to what people have said to me as I packed up my 80something mother from her spacious home in Ohio and moved her across country to share my small, but cozy, Manhattan studio on the Upper Westside four years ago, I’m no saint. It was a no brainer; we were very close and she was failing living alone. My stats: Baby Boomer, freelance Make Up Artist in film & television with a part time make up artist gig at a well known, international cosmetics/skin care and fragrance company, “Bella”. I’ve never married although lived with men and have been proposed to a couple of times and never had children. Just wasn’t in the cards. I have a wonderful rescue white and gray cat, Milo, that’s the love of my life these days. I clip my mother’s overgrown toe nails in the middle of the living room when I’d rather be the make up artist that is creating a smokey eye on a guest appearing on The View. That symbolic irony is not lost on me as to how my life has changed. I’m cranking my neck to watch the make up artist, longingly wishing to trade places. She could clip my mother’s toe nails and I would happily make magic on some woman’s face. And Nothing kills a libido like caregiving.  My sex appeal is on life support.  Between caregiving and menopause – the pounds piled on. Pushing a wheelchair up the street, trying to avoid sidewalk pot holes, breaking a sweat, wearing men’s dress/casual shirts from thrift shops and overly tight leggings cuz all my cool black clothes don’t fit…not a man magnate except the occasional assist navigating around.

I do have my partners in crime, two close girlfriends who share the ledge with me; “Ming Toy Horowitz” and “Jenny Lane”.  I’m “Mitzi Santiago” (my first pet was a boxer, Mitzi, and my first address was 46th Avenue & Santiago).  Ming Toy’s  elderly parents live on the Upper Eastside (a Chinese mother who was driving Ming Toy to matricide and a Jewish father who was driving  when he should have turned in his car keys years ago).   Jenny  has an alcoholic mother in the throes of dementia forcing Jenny to shuttle back and forth to Long Island to stop her mom from selling off pricey family heirlooms on e-bay for dimes on the gold bullion.  A Modern Day Three Musketeers. We all loved (well, I did) our aging parents, but I found myself constantly saying, “it’s not her fault, she can’t help it” and “I’m only human” to Ming Toy and Jenny. Ming Toy, Jenny and I all seemed to agree that bodily functions with the elderly trumped The Oscars, election night and the Jodi Arias trial on HLN and CNN.  We all felt like we were going to implode after constantly  arguing with our parents, “yes, you did have a bowel movement, I swear, I wrote it down, you initialized it, twice, I wouldn’t lie…” All I could think of was – when did having a bowel movement become an Olympic Sport?????



et cetera