Inside the Dementia Epidemic: A Daughter's Memoir (25 page)

Michelle kneels down in front of my chair and makes a joke—I don’t remember what—“just to get you to smile, Martha.”

As I walk down the hall in a daze with Michelle I ask how often the residents are taken out of the building to special events. If I discontinue Maggie’s aide to save money, I think to myself, I don’t want Mom inside all the time except when I take her out. Michelle doesn’t say “once or twice a week” or anything concrete like that, but suggests I take a look at the calendar, and asks me if I get one in the mail (I don’t). In the activities director’s office she hands me a copy. I can tell at a glance that the outside (“OS”) activities are few and far between. Michelle points out a concert
in the living room that night that she thinks my mom will enjoy. Again I suspect that my mother needs more outside activities than Elm Haven will provide.

I
find Mom sitting in a rocking chair in the living room. Michelle puts some music from the forties on the CD player, and Diane sits next to a woman and talks with her. The woman, with short gray hair and far-away eyes, says to Diane, “I don’t like you.”

“Well,” Diane says, “I like
you
.” She asks the woman if she can give her a hug. A moment later Diane and the woman are standing up, holding hands, dancing. Other residents clap along to the music.

I whisper in Mom’s ear that I want to go to her room to check her bra size. I need to order her some new bras.

“Mine are a little...worn out, are they?” she whispers back, enjoying our game.

I tell her I will be right back, and lope off to her room where I find only one bra in her drawer and the size is rubbed off the tag. I decide to wait until my next visit to check the bra she’s wearing.

It’s an hour past when I thought I would be done with the meeting, and I am eager to get home to Morgan, who’s still in elementary school and arrives home before Andrew, a middle-schooler. I also want an excuse to leave, to get back to my own life. I did what I came to do.

A
few days later, at eight-thirty at night, I get a call from Elm Haven.

“There was an incident with your mom tonight that I need to let you know about,” an RA says.

“Is my mom okay?” I interrupt, panic rising.

“Yes, she’s okay,” she says, though she sounds shaken. She tells me that they could not find Mom, looked everywhere for her, then finally found her in another resident’s empty room where she was half undressed and getting into bed. The RA “redirected” her to get dressed and go back to her own room. As the RA was helping her pull her pants up, Mom reached down, grabbed the pen the woman had in her pocket and tried to stab the pen into the woman’s neck.

“Luckily the pen was closed. It just left a red mark on her neck,” this RA tells me now. The RA had reached for the emergency cord by the bed, and when two other RAs rushed in they found them standing stock still, Mom still pressing the pen to the RA’s neck.

I can’t wrap my mind around the idea that Mom tried to stab someone in the neck with a pen. I can see the steely look in her eye, but she’s never been violent. This is new. I don’t understand it.

The RA tells me that they had to call me to report it and they must send an incident report to Mom’s doctor, too. I feel awful for the night RA, and ask if there is anything that I should do or can do, and the RA on the phone says no. I don’t think to ask if the night RA was my mom’s favorite or perhaps someone new.

Ben is with me in our living room when I get the call. I’m shaking inside as I tell him what happened. He gives me a long hug. A half hour later I start to have a panic attack—the first in several years. My back heats up; I feel warmth and pressure in my chest, and I’m agitated. When this happened before, well before Mom moved in, I went to the emergency room no less than five times, scared I was having a heart attack. It was diagnosed as either a panic attack or an allergic reaction to something, no one was sure. I am sensitive to wheat, and had wheat this evening. Now I ask Ben to find one of my old medications for anxiety. I take a half dose and feel better within minutes. I pat the couch so Ben will sit next to me and he holds me in his arms.

F
irst thing in the morning, even before I brew my coffee or take a shower, I sit at my desk and skim the book
The 36-Hour Day
for information about dementia and violent behavior. I read that “combativeness” is common in later stages if the person feels threatened or stressed, but I can find no examples of people trying to plunge sharp instruments into other people’s necks—just biting, slapping, kicking, that kind of thing. What Mom did last night seems to me to be more homicidal, more evil. At the moment I want nothing to do with her. If I thought it was purely the dementia I would feel sorry for her. But that anger is too much like her anger when she was anxious and kicked me out of the house.
I’m afraid that whatever is left of that anxiety buried deep inside her will make her more prone to dangerous acts of violence now that any inhibitions are gone.

I search online for “Alzheimer’s disease, violence” and find nothing like “my mother tried to stab an aide.”

I wish the Alzheimer’s caregivers support group was meeting the following Tuesday, but it will be in a few more weeks. I consider calling Dan, the facilitator.

As it’s a weekend, Diane, the director at Elm Haven, returns my call from her home. Does this kind of thing happen often? I ask. Diane says no, it’s the first time something like this has happened. Wow, I think. Mom is a freak, a nut job who’s dangerous to others. But, Diane says, she talked to the RA and the RA is fine and Mom is back to her old self, “sitting happily in the library, her eyes that bright blue.”

Diane tells me that before Mom grabbed the pen she was not acting agitated, but she did say to the RA something like, “This is my space—get out of my space.” Diane tells me as well that my mother might have the stomach flu that’s going around and that’s why she acted out as she did. They will just keep an eye on her and I shouldn’t worry. “Feel free to call me at home,” she says.

I’m beginning to see that Diane really might be open to talking to family members as a social worker or counselor, that’s she not just saying it.

I
n the afternoon I call Maggie and ask her if the private aide, Candy, could take Mom out to only one place, for a maximum of three hours, rather than to two or three places for six hours, as she has done a few times. I tell her about Mom’s incident Friday night after she was out with Candy, and how I was told that at dinner Mom was agitated, talking on and on about “that bitch.” I tell her I’m not assuming that there is a correlation between her time with
Candy that day and her violence later that night, but I want her to know that my experience with Mom, even before the dementia, is that she may seem to be having a good time in the daytime but will get burned out if there is too much going on. She’ll turn against people in the evening, wanting only to be left alone. Her brain seems to go on overload.

Maggie listens patiently and agrees to limit Mom’s outings to one or two destinations, no more than three hours, no problem. Then quietly she asks me how I’m doing. I feel grateful, again, that someone asks me that.

“I just can’t understand what happened. Have you ever heard of something like that?”

“Sure, that kind of thing can happen, especially if the person is afraid. In your mom’s mind she could have been defending herself. She might have felt cornered.”

I tell her what Diane said about Mom saying, “This is my space, get out of my space.”

“The girls,” Maggie says, meaning the Elm Haven RAs, “should have known that if your mother felt scared or angry or said anything like ‘get out of my space’ that they should have backed off and left her alone for a few minutes.” She sounds more upset with how the RAs acted than with Mom’s behavior.

For the first time since Friday, I feel less ashamed of Mom, less afraid that what she did was abnormal even for people with dementia. I feel as if it’s going to be all right.

T
hanksgiving morning Morgan wakes up with the stomach flu and throws up every half hour. I have a mild case of bronchitis again and struggle to make two pumpkin pies and one banana cream pie as Ben starts the turkey, stuffing, and cranberry sauce. At mid-day I decide that, even if it’s a holiday, it’s just a really bad day to have my mother over for a meal. As Mom used to say in her 12-step program, “Remember that a holiday is just another day. There’s no need to get stressed out trying to make it perfect.”

Surprisingly, I feel no guilt. I assume that Mom will not remember what day it is, even if the staff serves her turkey and pie. She may appreciate the idea of Thanksgiving for a moment, but then the thought will be gone.

A
week later I take Mom out on a Friday night to hear the Vienna Boys’ Choir perform at a theater downtown. She has always appreciated classical music and I know she will love this concert, but
I dread the whole process of getting Mom to the theater on time. I called Elm Haven to tell them when I’d pick her up, but when I arrive she still needs to be taken to the bathroom. When I finally get her in the car, I remind myself that if we miss the concert, I could just take her out for ice cream and bring her home. But—darn it—I really want her to be able to enjoy this performance. Most likely she will never have another chance to hear the Vienna Boys’ Choir in person. I have to get her there, I think.

We make it with a few moments to spare. Throughout the concert Mom sits quietly; she knows how to be a good audience member. When I was in middle and high school, Mom would drive an hour in order that the two of us could hear the Rochester Philharmonic. Her knowledge of how to listen quietly without disturbing the performers or other audience members must lie embedded in the deepest parts of her mind; she doesn’t talk to me or squirm; with her legs crossed, her hands folded in her lap, and her chin tilted up a bit, Mom gazes at the stage and smiles.

After the concert, as we walk past the stores decorated for the holidays, Mom turns to me and says, “I want you to know...that I just love this—tonight, being with you.”

I say, “Me, too, Mom,” though I’m not sure what she means. What I hear is not “being with you,” but “tonight.” I want to believe that what she loved the most was the concert. I want to give her these kinds of experiences. What I’m not quite ready to give her each time we see each other is the more intimate gift of my sustained attention, my presence, my self.

Back at Elm Haven, Mom shines, exuberant. “I had a
wonderful
time,” she tells the RAs. I’m surprised that she remembers where we were, but she seems to know that we just heard a choir. She lies on top of her bed, and when I kiss her goodbye she’s still smiling; her joy nearly lifts her off the bedcovers.

• • •

T
he next day, after cleaning the cottage, I arrive at Elm Haven for their holiday tea party. An RA tells me right away how much fun my mother had the night before, how much she talked about it. Michelle, the nurse, and Crystal, the sales director, come over to chat with Mom and say hi to me as we sit in the dining room, and they tell me again how happy Mom was when she got home last night from the concert.

Michelle adds, “You know, we love your mom. We just think she’s a sweetheart.” To Mom, she says, “I could just squeeze you!”

“You can squeeze me...all you want!” Mom replies.

D
iane, the director, tells me, “Your mom seems happy here. I think she feels safe.”

I believe her. I no longer suspect the friendliness of the staff to be fake. They genuinely enjoy the residents and their jobs, and I believe my mother can tell.