Reverse Empty Nest Syndrome

http://www.flickr.com/photos/run_dorkas_run/When I walked into the front door of my mother’s home, a little over two weeks had past since my last visit. Because of the influenza epidemic that turned Arizona bright red on the “flu view” map of the U.S., the home issued an edict banning practically all visits until it subsided. They told me that if I was healthy, I could check in on her as long as I wore a mask and doused my hands in sanitizer……………………………. I think they felt sorry for me. I sounded completely lost when they called to say no visitors: “Oh. How long? Really? I, mean, I’m fine. Can’t I just check in on her once in a while? I just worry.”

Unfortunately, my own immune system was obliterated not 24 hours after the ban was put in place.

Great timing.

Before this, the longest I had gone without seeing my mom was, maybe, 48 hours……………. When she spent time at the geriatric psych ward last February, I was told I had to wait for her to be assessed.

Torture.

Letting go is not my thing.

This time, I was too sick to get out of bed. Too sick to get in my car. Too sick to feign good health just so I could see her. I really missed my mom. I felt empty. Alone, really. Even though my mother can’t talk to me, her presence, while it makes me sad on the one hand, also gives me comfort. Of course, in some ways, this is what it’ll be like when she’s actually gone, and if this is a sign of things to come, it won’t be the relief I’m so desperately seeking.

Life without stressing over her wellbeing, her care, getting kicked out, her flooded diapers, if she’s in pain, Medicaid, finances………………………….

I feel physically, emotionally and mentally sick. I am physically, emotionally and mentally sick. Who am I kidding? Sure, this might be the flu, but it’s also years of fighting the disease that has consumed both my mother and my father.

I don’t expect either parent to be alive when I turn 40. That’s four years from now.

A reverse empty nest.

Last Monday, despite the ban, I decided to visit my mom. They said I could. I walked in expecting to be turned away. The thing is, I was really worried about her finger nails. What if they cut her nails too short or what if they didn’t cut them at all and she snagged her nail on something? What if she has a painful hang-nail? I brought my clippers.

I am perpetually drowning in the minutiae.

***

“Hey Patty, I know there’s the ban, but can I please see my mom? I’m not sick anymore.” 

“Hi Kathy, Sure. How are you feeling?” 

“I’m OK. I just miss my mom is all.”

“I know. I would feel the same way. I’ll give you a mask; just be sure to use the hand sanitizer.”

“Should I leave my bag here?”

“I don’t think that’s necessary.”

My mom’s asleep. Her head is hanging to the right like a rag doll. I take a black sweatshirt, fold it up and tuck it beneath her neck. The room is warm and  her radio is playing NPR. Aside from her crooked neck, she looks comfortable. I place my bag on the console nearby and plop down on the arm of her beige pleather chair. She finally wakes up, turns her head and stares at me. I smile. Of course, she can’t see my smile… I’m wearing a blue surgical mask that sits awkwardly on my nose. I squeeze the metal band on the nose in hopes of it fitting a little better (don’t these things come in small?)……………. UGH, now my glasses are fogging up. I consider taking the mask off… just so she can see who I am. What if she forgot who I am? It’s been over two weeks? I decide against removing the mask. Instead, I take her hand and hold it. She can’t really hold my hand; her brain isn’t firing off a signal that would tell her fingers to wrap around my hand.

A few seconds pass and she starts yelling.

“It’s me! Your daughter! I love you.”  She’s either horrified by my presence or saying hello.

Hard to tell.

Mom’s roommate is in the room. I’ll call her Margie, though that’s not her real name.

“Hey Margie, how are you? Have you been taking care of my mom?”

“Oh, sure.”

I don’t want to stay too long, it’s already 9:00 a.m. and I’m late for work. I rub mom’s head until she falls asleep again……………………………. I look at Margie and ask her to take care of my mom.

She obliges, of course.

I walk outside, talk with some of the caregivers, get in my car and drive to the office.

Just your typical Monday morning.

>>Flickr pic by Run Dorkas Run

Falling Down Sick or The End. Maybe. Finally? Maybe.

My mom fell. Hard. On her face. She was trying to get out of bed. She seemed OK. Shaken, but OK. I walked in the door as they were calling me to tell me about the fall. I stayed for dinner. She had a slight fever…………. could be from the fall; could be something else. She had seriously declined over the last month or so………… I fed her soup, gave her sips of water…………… I was worried she was dehydrated. I kept giving her water. I gave her too much. She threw-up. The med-tech said it could be the fall………….. a head injury. We should go to the ER. I hate the ER. Staff are just not equipped to deal with severely demented patients……………..  and it’s incredibly traumatic for the demented individual………………… Still, I knew the nurse was right. We needed to go. So we went. It was around 5:30 p.m.

I decided on the way that if there was serious brain trauma, I was going to let nature take its course. I would call hospice and make her comfortable. I wanted no extraordinary measures taken………………….. my mother has a lousy quality of life. She can no longer speak. She lost her two words: “Despierta America” and “la fruta.” Instead she yells out. She can’t walk. When she’s not sleeping, she just stares at nothing. Her food is pureed like baby food. She can’t bathe herself. She wears diapers. She needs a caretaker to physically change her position so she doesn’t get a sore.

Something is very wrong with our definition of “life.”

A cat-scan revealed nothing……………….. good news. An x-ray of her lungs revealed pneumonia. Pneumonia is a killer. And it’s a blessing in disguise (depending on your definition of life). I had a choice. I could admit her and begin a course of intravenous antibiotics…………….. or not. They would send her home with a script. It was 11 p.m. I was tired. So we left with a script. I regretted it. I wanted to tell them to stop. I didn’t know what to do…………………… I don’t sign death warrants for a living. It was just me and I had to make a choice……………… I don’t know………………. I should have said no. I wish I had declined the script.

I prolonged her suffering.

What did I do?

Around 2 p.m. the next day, I drove to her church and waited to talk to her priest. I wanted to discuss last-rites……….. and I wanted to talk about the antibiotics. I hashed it out with friends, with my boyfriend……………. the thing is, no one can tell you what to do in this kind of situation……………. they can’t. It’s literally a life or death conversation and only you can make the final call. Sure, they’ll listen; they’ll tell you that you’re doing the right thing………………… they’ll say, I can’t even imagine. I hate that.

I can’t even imagine. Now that’s just a shitty thing to say. But I know what you mean, so it’s OK.

I decided to finish the antibiotics, wait and see. If there was a reoccurrence, I would let nature take its course.

A few weeks have passed and while she’s kicked the pneumonia, she’s not exactly eating. We’re talking about a woman who was ravenous………… she was the person who ate her meal plus her neighbor’s meal…………….. Now she only eats a few bites and drinks a few sips……………….. Hospice was called to assess.

The nurse looked at her, looked at me and said she qualifies.

He gave me a hug and left.

Is she dying?

My mother is not “actively” dying. She’s dying………………. but not actively…………. nor is she “pre-dying.” Dying is a process………… like birthing a baby………………. and it happens in stages. They should really provide you with a scale like they do with your cervix………………. I’m guessing here, but I’d say we’re about 2-3cm dilated.

Welcome to Purgatory.

I am ready to let my mom go. I don’t know how much longer I can keep going………………………. I’m tired. She’s tired. Maybe she and I are feeling the very same thing………. we just want this to be over with. I think she knows. Sometimes, she’ll look at me and her eyes will be crystal clear…………… like she knows she’s trapped in a broken-down body…………….. her mind, mostly mush, except for that one part that says, Hey, what the fuck is wrong, why can’t you understand me….. save me…. help me…… please help me.

THAT THOUGHT wakes me up in the middle of the night. Like wake-up sweaty, stressed-out and with a headache to boot.

Thank you Costco for bulk Advil.

So where are we? I don’t know. Limbo, I guess. I am trying to make arrangements. I picked out an urn. I’m 35 and I picked out an urn………………… and then I thought about what should I wear to the funeral. I know. But it crossed my mind. She’s not even dead yet and that popped into my head. You can laugh if you want. Or you can judge me. I don’t really care.  I am too tired to care.

Dying or End Stage…………… it’s like opening up a can of maggots.

It’s that shitty.

But it will get better.

>>Flickr photo by archangel_raphael

SMITH Magazine Interview: Jeannette Montgomery-Barron

An excerpt from my latest interview, which appeared on SMITH……………

It was two Sundays ago when I showed my mother Jeannette Montgomery-Barron’s new book, My Mother’s Clothes. Thing is, I wasn’t talking to her about my latest freelance gig; I was actually trying to distract her—in church. It wasn’t working. I know, you don’t get it. You don’t get the fact that my reading Jeannette’s book to my own mom was tragically ironic.

Or maybe it was just sad. Possibly humorous. I’m not really sure.

Funny and sad are intertwined, and “happy” is a word I reserve for special occasions, like “love.”

Turning the pages, I read to her out-loud and pointed to each beautifully shot photograph.

“Pants. Pantalones.”
“Blouse. Blusa.”
“Shoe. Zapatos.”
“Purse. Cartera”

Then somewhere in the mix, as often happens, I became the mother and she became the child.

And so the common thread emerges.

Montgomery-Barron’s book is a memoir and a poignant tribute to her own mother, who passed away in 2007 from Alzheimer’s disease. My mom is living somewhere in the murky, muddled middle stages of vascular dementia—one of the many diseases that fall under the umbrella that is dementia—Alzheimer’s being the most common, with some five million Americans living with the disorder.

Check out the rest of this interview and/or share it with your peeps.