Caring For Mary (3 page)

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
 

S
he 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?
 

S
hort 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.

Dementia Dos, Don’ts, and Dignity
 

P
eople are generally shocked to the point of ‘mutism’ by the way I talk about Mary when she is in immediate proximity. Sure, I understand it, but I won’t be cowed by such reactions. Mary remembers nothing after five minutes and it appalls people to hear some things. Let’s look at the facts:

Nicholas: Just tell her she looks beautiful and she’ll be your friend for the day.

Mary: Who are you talking about, honey?

Nicholas: I’m talking about you right in front of your back, honey.

Mary: You be nice to me, honey.

Nicholas: I am, honey. Telling people to treat you well is being nice.

Mary: Okay, honey—if you say so.

Another time we were in the hospital and I was standing at the nurse’s station, giving them the heads-up.

Nicholas: Mary will be fine if everyone says, “Hi, gorgeous.” She will not be afraid of them and—trust me—she is afraid because she hates hospitals. She doesn’t remember anyone, and I won’t always be here.

Nurse: No problem.

Nicholas: Also, because she will feel very alone and frightened, staff should be encouraged to just pop their heads in for a moment and say those very same words. It will help her feel better.

Nurse: No problem.

For the most part, it was no problem—except for one nurse who absolutely refused to get on board the “Be Nice to Mary” train.

Nurse: I’ll be back in a couple of minutes.

Mary: Who is she, honey? I don’t like her.

Nicholas: I’ll find out and be back in a minute.

I hunt down the barely civil nurse and have a chat.

Nicholas: Excuse me, but can we talk for a moment?

Nurse: Sure.

Nicholas: You know Mary suffers from dementia and is scared out of what little wits she has left, right?

Nurse: Yes, I’ve seen her chart.

Nicholas: And did anyone at the nurse’s station tell you that being just a little nice would make a world of difference to this poor old lady?

Nurse: Sir, I’m doing my job.

Nicholas: No, you are being a nasty witch, [or some semblance thereof ] and I don’t appreciate it. How hard is it to call her honey? I mean really? Can’t you just smile and call her honey?

Nurse: I am not being mean to her.

Nicholas: No—you are being worse than mean. You are being indifferent to a frightened old woman, and I will talk to your supervisor if I have to.

After the nurse walked away,
I talked with her supervisor—to absolutely no avail. I wish I could say that the nurse saw the error of her ways, but she grew little icicles and refused to be pleasant. Mary
only
remembered that about her stay.

Do be nice. Don’t be embarrassed for them because they don’t remember anything. If you are going to be in the life of a dementia-stricken person, normal rules do not apply. Be direct, for crying out loud. Some people beat so far around the bush that the point they are trying to make is completely lost. Just say it. It’s not cruel for them—and it’s easier on the more highly functioning members in the conversation.

What about their dignity you ask? No one is saying to belittle or offend them. So what if undies are actually diapers. A euphemism is not an insult when you are protecting the dignity of your charge. Think of the family.

Not being a fashionable man of means compounded by moderate colorblindness, I made mistakes. But the worst part was not
caring about it. Beth set me straight pretty quickly during one visit.

Beth: What is my mother wearing?

Nicholas: Leading question. Just tell me what I did wrong.

Beth: She’s wearing pink socks, open-toed shoes, ugly pants, and a mismatching top.

Nicholas: So
that’s
what your mother’s wearing.

Beth: Don’t be funny. I want her dressing like she would if she still was dressing herself. You know how nice she looked.

Nicholas: I—

Beth: I’ll come over tomorrow and put together her outfits so you won’t have to match anything. And no more pink socks outside the house—regardless of what else she is wearing.

Nicholas: Yes, ma’am.

Early on, I fell into the “dress the loony like a loony” mode—but I found out quickly that not only was it wrong, but it was disrespectful. Once the clothes were selected, Mary always looked nice—regardless of my helplessness around women’s fashion. I felt better about it in the long run.

Lesson Learned:
Go to bat for your charge. They may not remember it, but it will do your conscience a world of good.

And When She Did Remember
 

W
hat Mary remembered was always somewhat skewed. Because Beth and I are entertainers, Mary, Popi, and a small gang of our elderly supporters would attend our shows. Mary seldom remembered the performances—and if she did, they weren’t accurate.

Nicholas: Honey, did you like the show?

Mary: What show was that, dear?

Nicholas: The show you just saw with me and Boo Boo singing the songs of Dean Martin and Liza Minnelli.

Mary: Oh yes, dear. It was very nice. I love your “O Sole Mio.”

Nicholas: Thanks, honey. (I never sang that song.)

Mary: I remember when Boo Boo came over last week (she hadn’t) and sang to me with tears in her eyes (touching, but again, never happened). I told her how proud of her I was. (This also never happened.)

Nicholas: I remember too, honey.

Or:

Mary: I got a letter from Momma and Daddy and Daddy yelled at me. Who does he think he is?

Nicholas: Your daddy.

Mary: He has no right to tell me what to do.

Nicholas: Your daddy can’t tell you what to do? Why not?

Mary: Because they live in Irvington—and have no right.

Nicholas: Honey, what does where they live have to do with their rights as your parents?