Author Nicholas Andrefsky never envisioned that he would one day be a caregiver. Nothing in his life prepared him for that daunting task, but he was in need of money and his dearest friend on the planet asked for his help. Caring for Mary documents the ups and downs of his time as a caregiver to the strong-willed Mary as she struggled with dementia. Mary was no pushover, but Nick took a unique approach to understanding her needs. They bonded, and she came to view him as a trusted ally instead of an enemy. He recalls several different scenarios that occurred as he cared for Mary, complete with straightforward, occasionally humorous, and always honest in the assessment of how to handle each situation. His message is that you must understand that the person for whom you are caring will not change, that the best way to work with them is with humor and understanding, allowing them to maintain their dignity. Being a caregiver is not easy, but it can be rewarding when handled in the right way. Dementia is not reversible, and it grows progressively worse as time wears on. Even so, there are glimmers of recognition and humor, both of which come shining through in these winning stories.

Caring for Mary

One Caregiver's Humorous Dialogues with a Demented Old Italian WomanBy Nicholas Andrefsky

iUniverse, Inc.

Copyright © 2012 Nicholas Andrefsky
All right reserved.
ISBN: 978-1-4620-9759-3

Chapter One

Getting Started

Meds may well be the hardest part of the journey because they are critical in my case. Timing is everything, and the daily routine cannot be ignored.

Mary suffers from colitis, diverticulitis, high blood pressure, and anxiety. She is also sensitive to nearly everything she eats. Learning to keep the meds down was a trick in itself.

I eventually figured out that all forms of fiber upset her stomach. This would cause her to vomit her meds or have diarrhea. It was a protein and starch diet for her. Since her favorite snack was anything with sugar, I had to hunt down something sweet that wouldn't pack the pounds on her. Flavored mini rice cakes were the way to go. They are low in everything, and she thinks of them as a treat.

Mary also suffers from an insidious cough. This cough is so wet it sounds like pneumonia. The few times we made the trek to the hospital, I had to assure the doctors that her left lung always manifested like pneumonia and to ignore it. This was not easy to do as a layman. I finally got her primary physician to make a note in her chart that she had a bad left lung.

I discovered that she was allergic to dairy products. When she stopped eating them, the cough slowly abated. We had to wait till she was unable to care for herself to get her to stop ice cream—a dietary staple. Speaking of staples, because she could not have roughage, she had stool softeners. More joy there.

Nicholas: Ah, honey, you're awake.

Mary: I don't know what I'm doing.

Nicholas: I could tell by the two skirts, two blouses, and one nightgown you put on over your other nightgown. Did you change your undies?

Mary: I think so.

Nicholas: Then where are your dirty ones?

Mary: I don't know.

Nicholas (after some in-depth search): Could this be them under your pillow?

Mary liked to dress herself because at one time she was the nattiest of her legal secretary sect. She prided herself on looking pretty. We ended up simplifying things: four lovely cold-weather dresses for when she was going somewhere nice, four lightweight mid-calf-length summer skirts with many mix-and-match lightweight tops. Even a colorblind goober like me was easily positioned to keep her as fetching as an eighty-seven-year-old could be. She was cold all the time, but that is its own chapter.

Lesson Learned: Know your charge's meds, the food they like, and routine, routine, routine.

The Poop Chronicles

The primary problem with Mary dressing herself isn't the multiple outfits as much as it is the hide-and-seek with dirty underwear. We switched over to adult diapers but called them undies to save a little face—but a little more on this later. It is hard to do when someone is doing the following:

Nicholas (through closed bathroom door): How we doing, honey?

Mary: Not so good, dear.

Nicholas (coming in through a poorly locked door): Let's see what's going on, shall we?

Mary: Oh, honey, I'm so embarrassed. I'm nearly naked.

Nicholas: You're embarrassed about being nearly naked, not about getting poop all over the floor, your feet, slippers, and hands?

Mary: You be nice to me.

Nicholas: I am being nice. I could toss you in the tub headfirst but instead will allow you to disrobe like a lady and step in so we can clean you up.

Mary: Thank you, honey.

Ah, stool softeners. Where do you think we'd be today without them? Probably cleaning up little brown marbles instead of entire bathrooms. It wasn't that simple, though—we had some tweaking to do to stop the following from ever happening again.

Mary (emerging from her room): Honey, I have a problem.

Nicholas: I can see that. Your jammies are covered with poop from waist to foot. What happened—couldn't make it to the toilet?

Mary: I don't know, dear. I just don't feel good.

Nicholas: Let's get you on the toilet. (We strip off the jammies—but not quite in time to make a clean landing. Diarrhea squirts everywhere.)

Mary: What's going on?

Nicholas: You've got the squirts, honey.

Mary: I don't think I like it.

Nicholas: That makes two of us, darling.

She pooped for a while, got in the shower, squirted a little more, and finally stopped. Before we continue—a note about the jammies. Mary had a penchant for removing her undies when going to bed, peeing or pooping the bed, and not knowing why she was filthy in the morning. Beth came up with the button-up footed jammies with the feet cut out. Mary had a problem with the buttons so the undies stayed intact all night, making less of a mess for moi.

Back to the softeners. The one extreme was explosive diarrhea. Here's the other:

Mary: Honey, there's something wrong.

Nicholas: Yes, dear. There is blood everywhere.

Mary: Why do you think that is?

Nicholas: My guess is you tried to poop and had a blowout. Have you tried pooping?

Mary (embarrassed): Yes.

Nicholas: And?

Mary: I did a little, but the blood came out.

Nicholas: Are you done pooping?

Mary: I think so.

Nicholas: Okay, let's get in the tub.

Mary: I don't want to take a shower.

Nicholas: You're not going to take a shower. You're going to depoopify yourself.

Mary: Okay, dear.

Yes, occasionally you have to use harsh language like "de-poopify" to drive your point home. I wish this were the end of the Poop Chronicles, but there is another issue that needs to be addressed.

Nicholas (through the badly locked door): Honey, are you putting your hand in the toilet?

Mary: Don't listen by the door.

Nicholas: I wasn't listening. I was passing by and heard splashing. Are you putting your hand in the toilet?

Mary: No.

Nicholas (toilet crashing again): Then why is your hand wet? Why is there poop all over your hand and under your nails?

Mary: You be nice to me.

Nicholas: How exactly am I not being nice to you?

Mary: You shouldn't be asking me such questions.

Nicholas: And you shouldn't be lying to me. Are you done?

Mary: Not quite.

Nicholas: Then, honey, use the baby wipes next to the toilet.

Mary: Okay.

Nicholas (just outside the door): Now how we doing, honey?

Mary: Better, I guess. (splash)

Nicholas (enter SWAT guy): Honey, why are you still using your hand?

Mary: I'm not.

Nicholas: But, honey, you are. Look at your hand.

Mary: You can't tell me what to do.

Nicholas: Okay, clean up when you're done.

You know, folks, there's only so much you can do—unless you want to do it yourself. I have placed those darned wipes in her hand, on her lap, and made her swear—but it's still all about the hand. Eventually I just cleaned up after she cleaned up and had to accept that.

I don't know where the disconnect happened, but—somewhere along the line—this tiny, pretentious Italian woman convinced herself that wiping her butt with dirty toilet water was okay.

Lesson Learned: Like with everything else in life, choose your battles.

Bathing

Beth had a theory that old people were somehow afraid of the shower. I am inclined to agree since both Mary and Popi hated to get in there. Moving to Florida helped with Popi a lot because he loved the in-ground pool and was in it several times a week. Mary hated being wet to any degree. Whether it was her hands, her face, her sleeve, or a finger, she had to dry it off right away. Getting her in the shower was always le petite ordeal. And there are several parts to the event.

Nicholas: Okay, honey, let's take our shower.

Mary: I don't need a shower.

Nicholas: Your dirty little poopy pants beg to disagree.

Mary: They're not that bad.

Nicholas: Honey, the fact that you have to say "they're not that bad" indicates they are bad enough to warrant a shower. Let's go.

Mary: But I'm so naked.

Nicholas: Would you rather bathe in your clothes?

Mary (exasperatedly): No.

Nicholas: So, problem solved.

Mary: Oh, honey, it's cold in here.

Nicholas: Honey, its eighty-two degrees. It's not cold—you're cold.

Mary: The water is too hot ... that's better

Nicholas: Let's make sure we wash everything, okay?

Mary: I need a washcloth.

Nicholas: No washcloth, honey—you scrub too hard with it. How are we making out?

Mary: Okay, I guess.

Nicholas: Did you wash your popo and your coocoo?

Mary: Yes. I think I'm done. Oh, honey, it's cold in here.

Nicholas: It's 175 degrees in here, honey. Dry your upper body so I can get your shirts on you.

Mary: My upper body?

Nicholas: Yes, honey. No, honey. Your legs are not part of your upper body—your hair, face, neck, arms, tummy, chest, boobies, and sides.

Mary: But my back is wet.

Nicholas: That's why I'm here, honey. Lift your arms.

Mary: I'm cold.

Nicholas: I know, sweetie. Let's get your shirts on you.

Nicholas: Okay, now let's dry your legs, your popo, and your coocoo. Honey, don't rub so hard between your legs. Mary: I'm not.

Nicholas: You're rubbing hard enough to peel the paint off a barn—ease up.

Mary: Okay, honey.

Nicholas: Let's lube up your legs. Okay, sweetie, let's get your pants on.

This is day in and day out, the use of goofy sounds and songs. Mary will be the first to say to you "After all, I'm Italiano. Do you want me to sing in Italian?" The obvious answer is `yes' so she'll feel better but the whole time my shadow is throwing a noose over the rafters.

Lesson Learned: A pattern is a pattern is a pattern. Keep it simple—have her do as much as possible and make the nakedness less awkward by being goofy.

Honey, I'm Cold

She is always cold. Mary wears sweaters in eighty-five-degree weather and in ninety-degree weather if there is a breeze. Tizzie tells me—as did her friends—that she has always been like this. One time, we were in a doctor's office with a half a dozen others waiting in nothing but shorts and short sleeves.

Mary: Honey, it's chilly in here.

Nicholas: No, honey. You're chilly in here—it's comfortable.

Mary: No, honey. It's really very chilly.

Nicholas: Sweetie, look around you. Everyone is wearing nothing and you are wearing a sweater. It is you that is chilly—we are fine.

Mary: Well, then, I'm chilly.

Nicholas: Yes, honey, I know.

Every single morning we have the following conversation:

Mary: Honey, it's cold in here.

Nicholas: Honey, we are in sunny Florida, where the current temperature is eighty-three degrees. It is not cold in here.

Mary: Well, I'm cold.

Nicholas: Yes, honey. That is why you are wearing a sweater and I am wearing boxers and no shirt.

Mary: Aren't you chilly?

Nicholas: Sweetheart, if I were chilly, I'd wear something—honest. Let's have breakfast.

Occasionally the following will take place:

Mary: Honey, I'm cold.

Nicholas: Darling, that's because you are completely naked. Why have you removed all your clothes?

Mary: I don't know.

Nicholas: Perhaps we would be a little warmer with a layer or two.

Mary: I think you're right, honey.

During July and August, the following might take place:

Mary: Honey, it's cold. Can we put on the heat?

Nicholas: As long as I am walking around in a loincloth, we are not putting on the heat.

Mary: But, honey, you must be cold.

Nicholas: Sweetheart, do you really think I am torturing myself for no good reason?

Mary: No.

Nicholas: Is it possible I am playing a little joke on you—pretending to be hot when I am freezing my tush off?

Mary: No.

Nicholas: Then let's assume that it's really warm in here and you are the one who, as usual, is chilly, okay?

Mary: Okay, sweetie poopy.

Yes, we have a variety of vomit-inducing nicknames—sweetie poopy is the most popular. Actually, that is her name for me. I call her Miss Poopy—generally delivered in a nasal Oxford English accent. It keeps her smiling, which makes my life infinitely easier.

Lesson Learned: There are simply some things that will not change. Get used to the monotony of recitation—not conversation.

Hi, Nanny. Remember Me?

Short answer – no. Mary has three kids. Beth has provided her with five grandchildren and one great-grandchild, but she doesn't remember them. The good news (sorta) was that they didn't visit enough to cause a problem. I do not mean that in a snarky way. All are grown with their own busy lives and they were doing me a bigger favor by not being there because these two conversations usually took place next:

Before

Nicholas (to visitor): Do not say, "Hi, Nanny, remember me?" I will take care of it. And for Pete's sake, tell her she looks beautiful. Also—and this is very important—expect to carry the conversation and repeat things.

Nicholas (to Mary): Honey, look who's here. It's your grandson, Edward.

Edward: Hi, Nan.

Mary: Hi, honey. How are you?

Edward: Good, Nan. You look so pretty today.

Mary: I do? Thank you, honey. I don't think I look very nice.

Now Mary did not know Edward from Robert Duvall, but at least she knew he was not the enemy—anybody who was not introduced to her and approached without me or refused to be very nice. As reigning queen of narcissists, everyone needed to be complimentary. If not, she'd say, "Who was that dear? Well, they weren't very nice, were they?"

After

Nicholas: Well, wasn't that nice, honey?

Mary: Yes it was, dear. He was a nice young man. Who was he again?

Nicholas: That was your grandson, Edward.

Mary: He used to visit me a lot.

Nicholas: He lives in Philly now, honey. He works there.

Mary: That's nice, dear. What should I make for dinner?

There were some exceptions to this rule. Four people—three old, dear friends and one, as the movies would have it, was her exceptional handyman, Ken—were generally forgiven all ills. I still encouraged their effusion, but it didn't seem as necessary.

Vaso, Rena, Ken, and Volena all got passes from Mary. She had known them for a very long time and was actually able to sound like she was having a conversation—as long as they did the heavy lifting.

Nicholas: Mary, look who's here—your old friend, Vaso!

Vaso: .... darling .... how are you?

(Vaso is Greek and speaks like an automatic weapon, so I can only make out so much.)

Mary: Fine, dear. How are you?

Vaso: .... okay? .... .... and .... try this .... remember .... with Rena?

Mary: I—

Vaso: .... etc.

And so it would go. I am making light fun of Vaso, but Popi and I really enjoyed her company (the homemade Greek food had almost nothing to do with it). Since Mary adored her, she was encouraged to visit as often as she liked.

Volena was a remarkable friend in her own way. They would chat for hours. Mary would repeat the same things—but only till Volena could think of another topic. She was a great friend.

Mary seemed to genuinely love and miss Rena, but she was not able to visit Mary often because she was in a wheelchair. Mary—not wanting to visit anyone except her parents—never made issue of it.

When Vaso and Rena threw her going-away party at a nearby restaurant, Mary was deeply touched for the five minutes she remembered it.

Ken was simply a doll who had been taking care of Mary's handyman needs for over twenty years. He would sit and chat with her for up to twenty minutes after he was done with the work. She would rave about him for up to an hour after he left. Nice.

Our neighbor Benita was also very kind. Mary could never remember her, but she would visit occasionally. When she left, Mary would say, "Who was that lovely black woman?"

Thank you, kindness of visitors.

Some younger members of our congregation didn't quite understand the situation.

Mary: Aren't you a pretty girl? What's your name, honey?

Rosy: Rosaria—but everyone calls me Rosy.

Mary: How old are you, honey?

Rosy: I'm six years old. How old are you?

Mary: I have no idea.

Rosy: You don't know how old you are?

Mary: No. What's your name, honey?

Rosy: I just told you my name!

Mary: Tell me again, dear.

Lessons Learned: Lay a simple foundation for visitors and hope they follow it.

(Continues...)

Excerpted from Caring for Maryby Nicholas Andrefsky Copyright © 2012 by Nicholas Andrefsky. Excerpted by permission of iUniverse, Inc.. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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