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
What 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?
Mary: They live too far away to tell me anything.
Nicholas: So as long as they are not close by, they can’t give you their opinion?
Mary: Yes.
There are countless examples of these little disconnected conversations that, to the unhinged mind, make perfect sense. Sometimes, in anticipation of the conversation, I would preempt her.
Mary: Honey, do you think— (This would invariably be about food.)
Nicholas: No, honey, I don’t think—
Mary: Okay, dear.
Mary: Honey, isn’t it— (This, too, would be about food.)
Nicholas: No honey, it isn’t—
Mary: Okay, dear. When do—
Nicholas: Soon, dear.
Mary: Okay, honey.
Mary: Nick, shouldn’t I—
Nicholas: No, honey, you shouldn’t. I cook.
Mary: Good. You know I’m a good cook, though.
Nicholas: I do.
When she would fish for a snack, it made me just a little crazy.
Nicholas: Honey, why are you wandering around aimlessly?
Mary: I want … to … put something … attractive in my mouth.
Nicholas: How about my hand? Can’t you just say you’re hungry?
Mary: I’m not hungry—I just want something sweet to chew on.
Nicholas: Then you’re going to spit it out in the sink, I suppose.
Mary: No, I’m going to swallow it.
Nicholas: So, to recap, you want something attractively sweet to chew on for the sole purpose of swallowing it, yes?
Mary: Yes, dear.
Nicholas: I’m thinking you might want a snack.
Mary: That would be nice, dear.
The Weasel Sisters
We had three cats: Stivagli, Olivia, and Betty Jo, a.k.a. the Wink. Mary was always amazed that there were little kitties everywhere.
Having no memory, she would constantly exclaim, “Look, there are cats here!”
The other thing that amazed and freaked her right out of her collapsing mind was that Stivagli and the Wink were both black. When they appeared together, it was like a John Carpenter film to her.
Ultimately, Stivagli—who was terribly unhappy with the new living arrangements and living with two other female cats—agreed to relocate to Farmingdale, New York, to live with a semi-retired widow in her quiet condo. Lucky cat. Mary never noticed.
Mary: Look at all these cats!
Nicholas: Two cats are not “all,” honey.
Mary: But where did they come from?
Nicholas: Popi and I brought them when we moved in.
Mary: You moved in?
Nicholas: Yes, honey. We live here with you.
Mary: Where do you sleep?
Nicholas: Popi sleeps in his room, and I sleep in the room next to yours.
Mary: Did I make your bed?
Nicholas: Honey, you didn’t even know I lived here—how could you make the bed?
Mary: Because it’s the right thing to do.
Nicholas: Be that as it may, I make my own bed.
Mary: That’s good, honey.
After acclimating over time to having cats, the conversations turned to disagreements over their outdoor proclivities. They were completely fenced in, which meant nothing to the elderly worrywart.
Mary: Honey, I’m going to shut the door to keep the cats in.
Nicholas: No, sweetie. The cats like going outside.
Mary: But I don’t want them outside.
Nicholas: That is not your decision to make since they are not your cats.
Mary: Yes, they are. They are my cats.
Nicholas: Okay, if they are your cats, what are their names? [I know, I know; a cruel display of logic]
Mary: That doesn’t matter.
Nicholas: It does to me. And you keep calling them him when they are both girls. I know this because they are my cats.
Mary: I still don’t want them outside.
Nicholas: Sadly, honey, you don’t get a vote on this.
Over time, we allowed Mary to believe that the Wink was entirely her cat because she slept on her lap for long stretches and went into her room at night for “sleepies.” That did not change the outcome of the conversations.
Nicholas: Honey, don’t close the door—we need the air.
Mary: But the kitty is going out.
Nicholas: And she has been doing so all day long and you haven’t minded.
Mary: But now it’s getting dark.
Nicholas: Which means what exactly?
Mary: That they’ll get lost.
Nicholas: That is not possible since they are completely screened in.
Mary: But I want them in.
Nicholas: So it doesn’t matter what they want.
Mary: I don’t like you right now. You’re not being nice.
Nicholas: Because I am disagreeing with you?
Mary: Yes.
Nicholas: So if I disagree with you, then I’m not nice.
Mary: Yes.
Nicholas: And when you disagree, are you not nice?
Mary: I am always nice.
Nicholas: So then I have to always do what you say in order for you to be happy.
Mary: No.
Nicholas: Then I disagree and let the chips fall where they may.
Mary: I want to go home.
Nicholas: This is your home, honey.
Mary: My other home.
Nicholas: And which one would that be, the one in Irvington, New Jersey, where you lived as a kid, the one in Middletown, New York, where you lived for forty years, or Palermo, Italy, where your parents live?
Mary: My house.
Nicholas: Okay, honey, you go to your house.
Mary: I will. Where’s my room?
Nicholas: You want to watch The Three Tenors, remember?
Mary: Oh yes. Are they on now?
Nicholas: Yup
And so it would go. You could never disagree if you wanted to be viewed as nice. Mary had to have her way, and there were times when I would let her have her way—but only if the timing was right. Don’t get me wrong—I am not a tough task master. But if the house was warm on a beautiful day, there was no way on God’s green earth I was going to let her close the doors and windows because she was chilly. As the temperature started to dip, she could have her way, but till then—uh uh!
Lessons Learned: Misdirection. For those of you not in the theatre world, misdirection deliberately leads the audience the wrong way for the sake of surprise—like a red herring. This is the person who looks so guilty in every way so that the audience believes they are the culprit when actually it’s the little psychopathic toddler suffering from schizophrenia and illusions of a nonbedwetting lifestyle. Whenever possible, I would change the direction of the conversation to kill the problem. And it’s good to own opera DVDs.
Misdirection works in wondrous ways. Mary’s would say, “Honey, is there anything I can do to help you?”
“Sit down and leave me alone” immediately leaps to my lips. However, except when I’m cleaning, I say, “No, honey.” An elderly OCD-laden woman can easily be encouraged to dust things. She’s very careful, tires quickly, and is happy to have helped.
Second Lesson Learned: Find their niche and play to it.
Family Trivia for One
Sugar Cookie Please, Alex
As time goes on, Mary’s memory worsens. The only nice thing really about a ridiculous argument is that she forgets right away and doesn’t spend the night fretting. Yes, it is sad to see her change. She used to say, “That’s my daughter Boo Boo. That’s my little girl Taisia. That’s Frank Pank and my beautiful husband, Jackson.” Now she says, “Aren’t my relatives nice looking?” She doesn’t know a single name.
A few months ago, I was on the phone with Tiz and Mary recognized her voice and wanted to chat. A few nights ago, Beth and I were Skyping, Mary walked over and asked who it was without recognizing the voice or the face.
So, we play trivia for cookies. I give her enough hints to get her there and—believe me—she wants that damn cookie.
Nicholas: Okay, sweetie, here we go. Who is this man? (I hold up a photo of her late husband, Jackson, singing at Boo Boo’s house.)
Mary: That’s my husband. He was a priest, you know.
Nicholas: Very good and, yes, I know. I knew Jackson, honey.
Mary: You did?
Nicholas: Yes, but let’s focus, okay? What was your husband’s name?
Mary: Oh, honey, I don’t know.
Nicholas: Okay, let’s figure it out. What is your last name?
Mary: G—
Nicholas: Very good. So if he was your husband, what was his last name?
Mary: G … Jackson G—
Nicholas: Well done, honey. Wanna try for another cookie?
On and on it would go, but only as far as her three children. Her grandkids are foreign to her in every possible way—but she knows the two oldest by name (but not by photo).
Lesson Learned: This is a good way to kill time (instead of self).
The Dance of a Thousand Dinners
Mary’s biggest worry is what she is going to make for dinner. The answer changes with my mood, but the outcome is always the same. I cook.
All day long Mary would ask what she would make for dinner—before breakfast, during breakfast, after breakfast, during lunch, after lunch, during dinner, and after dinner.
Mary: Honey, what am I going to make for dinner?
Nicholas: Honey, we haven’t eaten breakfast yet. I have no idea.
Mary: Well, when do you think we’ll know?
Nicholas: Perhaps after lunch—is that okay?
Mary: Yes, honey. [wait for it] What are we having for lunch?
Mary: Honey, what am I going to make for dinner?
Nicholas: Whatever you want to make.
Mary: What do we have?
Nicholas: Take a look.
Mary (searching fridge): I don’t know what anything is. Can I make this?
Nicholas: Yes, darling, but I don’t think—no matter how you prepare it—you will enjoy a box of baking soda.
Mary: Honey, what am I going to make for dinner?
Nicholas: What do you feel like?
Mary: I don’t know. What do we have?
Nicholas: Chicken hot, chicken cold, or
tuna. [remember; colitis and diverticulitis]
Mary: Oh, honey, why don’t you decide?
Nicholas: I usually do, honey.
Then, after she was convinced that it was my turn to cook because she cooked last night, she would offer to help. More misdirection.
Mary: What can I do to help you, honey?
Nicholas: Find the sugar (this takes ten minutes—more than enough time to prep dinner).
Speaking of sugar, if it were up to her, she would live on it. It got to the point where I would only make her half a cup of decaf because she only took one tablespoon with half a cup—and with a full cup, she needed three tablespoons. With half a cup of decaf and lots of milk and—voilà—no problem. This brings us to wine.
Vino che generosa, the little guinea broad says. “I’m Italian. I love my wine,” says Mary—and she does so daily! Now, of course, she is not allowed to have wine, but being the caregiver’s caregiver, I was happy to promote the illusion—until I had that bone surgically removed from my skull.
Phase 1:
Go to the store and buy a bottle of nonalcoholic merlot. Pour into a regular wine bottle. Refrigerate (argh!) and serve.
Phase 2:
Buy nonalcoholic wine and forget to pour into other bottle. Mary does not notice. Yay!
Phase 3:
Accidentally spill wine and there is none left. Take half a bottle of raspberry-lime seltzer and surreptitiously mix in cranberry-pomegranate juice. Pour into wine bottle. Success!
Phase 4:
Am no longer surreptitious.
Phase 5:
Mix batch right in front of her.
Phase 6:
Just give her juice and ask how the wine is. She loves her vino—she’s Italian, you know.
Caring For Mary Page 3