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

How You Can Help Stop Alzheimer’s

Alzheimer’s Registry Aims to Wipe Out Disease

Originally from AARP Blog and posted by 

What if you could play a part in preventing Alzheimer’s disease? Maybe you can. The Phoenix-based Banner Alzheimer’s Institute (BAI) has established an online registry for those at risk of developing a disease affecting more than 5.4 million Americans.

Many signing on are adult sons and daughters involved in the caregiving of a parent with Alzheimer’s. The ultra user-friendly Alzheimer’s Prevention Registry is a national initiative that connects would-be sufferers with researchers. Participants learn the latest developments in the field and have the opportunity to participate in prevention trials. There’s also an online community.

The goal is to get 100,000 people in the registry by next July. Enrollees include Nancy Hetrick, 45, and her three sisters. Hetrick’s father developed early on-set Alzheimer’s in his 50’s. His father (Hetrick’s grandfather) was one of 14 children; all developed the disease.

Hetrick’s mother and her mother’s two siblings also have Alzheimer’s. The younger women plan to participate in any prevention studies for which they’re eligible.

The registry is part of a worldwide effort to tackle a disease that may impact 7.7 million nationwide by 2030.

Research released this month suggests there may be changes in the brain more than two decades before the first signs of Alzheimer’s surface. A study underway between the National Institutes of Health, BAI, the University of Antioquia in Colombia and Genentech is focused on cognitively healthy participants expected to get Alzheimer’s because of family history.

The group is studying 300 Colombians from an extended family who share a rare genetic mutation that usually brings on Alzheimer’s around age 45 and also will involve participants from the United States.

Two Alzheimer’s factoids:

  1. Recent research conducted by Edge Research of 1,024 adults ages 18-75 shows nearly half of American adults have a personal connection to Alzheimer’s
  2. 7 out of 10 worry they or someone they love will have memory loss or Alzheimer’s

Would you consider joining a registry for Alzheimer’s or another disease with a genetic component? What is your biggest worry about getting Alzheimer’s?

Follow Sally Abrahms at www.sallyabrahms.com and on Twitter. Take a look at her November AARP Bulletin story on the emotional side of caregiving.

Gag Reflex

Good news. I discovered something new about myself. Poop makes me gag.

I’m OK with cat poop and I’ve never really experienced baby poop—although, I imagine that mothers have some built-in mechanism to prevent them from vomiting all over their off-spring—but my mother’s poop makes me gag.

In the last month or so, I’ve dealt with my mom pooping her pants on more than one occasion. It’s messy. Poop just gets everywhere. It smells. Seeing it caked on her underwear makes me want to run. Gag. Swallow. I hate it. Of course, I can’t. I try to help her get clean, passing along wet paper towels. Unrolling more toilet paper. She hands me back her dirty underwear and used paper towels. Gag. Swallow. She needs more paper towels. Gag. How did poop get on the wall? Gag. Swallow. She’s mostly cleaned up. I hope it didn’t get on your sleeve. That’ll have to do until we get home or I get you diapers or something. Gag. Good. You don’t smell too bad.

Oh, Shit. My car seat smells like poop.

FACT. Human poop is really hard to clean up once it soaks through.

My mom has another nasty poop-related habit. She insists on wiping with a bath towel when she’s home. This would be fine if she could flush it. Instead, she hangs the poop covered towel back on the towel rank. Gag. Swallow. I’ve tried to show her how to use toilet paper. She’s not that into it. Gag. Swallow. When she hangs her poop covered towel back on the rack, I have to wait until she’s finished to toss it in the wash. My dad does the same. Coming in after to throw the towel away or in the wash. Gag. Gag. Gag. I remember the first time I witnessed the towel in action. My dad and I were sitting on the bed talking about it. He looked tragically defeated.

Like a soldier being told that they can’t come home.

 

Flickr pic by Scott MacLeod Liddle