Written by Barbara Beyer Malley

Edited by Dr. Kathleen Malley-Morrison

We are very excited to share with you an entire book on alz-caregiver.com written by Barbara Malley on her personal experience as an Alzheimer’s caregiver to her younger sister.  Barbara sent us her story (all 22 chapters!) to publish so that others may hear it and learn from it.  It is filled with stories and real life experiences as a caregiver (starting at 86 years old!) for her younger sister, Janeth, who was diagnosed with Alzheimer’s. Barbara also has a blog, check it out here.

Barbara’s writing career began in the ‘50s, with humorous articles published in several boating magazines. When she and her husband became pilots, tongue-in-cheek descriptions of their adventures appeared regularly in flying magazines. In 1991, Barbara published her first book, Take My Ex-Husband, Please—But Not Too Far.

Read chapters 1 and 2 // Read chapter 3

CHAPTER 4 : I CAN’T BE FUNNY WITH AN ELEPHANT IN THE ROOM

I send Dr. Demarko the form needed by Advantage House, but she’s away for a week, and now it can’t be faxed until Janeth is tested for TB. The timing will be pretty tight, with a nurse coming to interview Jan on Friday, the day before she moves in.

Kathie has her friend Majed lined up to meet Linda at Southern Artery Apartments in order to transfer the 16 boxes full of papers to her car to bring to Kathie for a bonfire. After getting these tasks done, the plan is that Linda will bring an overnight case with whatever her mom may have forgotten plus a very small number of dishes (a couple of cups, drinking glasses, a bowl, a salad plate). We can figure out what to do about the furniture another time.

I have several messages on my machine. The last one is a shocker. Carla says to call her in the morning. They have received the information from Janeth’s doctor. They now want her to come for a 2-week trial stay, and they’d rather not have her come on the weekend but on a Monday, Tuesday, or Wednesday. She says she’ll explain when I talk to her. What the verybadword is going on?

I’ve e-mailed Linda to come anyway, do everything as planned, working around Janeth if she thinks that’s possible. We’ll still need to get rid of all those boxes of papers, no matter what. I could bring Jan to Advantage House on Monday for the 2-week stay. Meanwhile, if they are going to turn her down as a resident, I’ll have to talk to the admissions director at Sunrise, who called a week ago to say they had a room available. I said to please keep my sister at the top of the list.

I’m wondering if Dr. Demarko reported Janeth’s hallucinations. Just like my ex-husband, who was sure he saw bugs crawling all over the place, and another time was sure a big, black male nurse had come into his room brandishing a big hypodermic needle, Jan hallucinated that a man had hidden on her balcony and attacked her in the middle of the night. Kathie was sure her dad’s terrifying “experience” was the result of a medication, made a phone call, was given the brush-off by the nurse in charge, got to speak to his doctor, who discontinued the little pill creating all the trouble. It was hard for Ed to believe the frightening encounter hadn’t happened. “It all seemed so real.”

Both the nurse who was going to interview Janeth today and Carla Thomson are keeping me in this awful limbo, wondering if the nurse is going to Jan’s apartment to evaluate her without talking to me first. If she were to bring up the alleged assault, I’m sure my sister would insist loud and long that the event did take place, the intruder did try to smother her, and she had the injuries to prove it.

WHY WON’T EITHER OF THEM CALL ME??

Carla called a few minutes ago, and the concern was as we thought—about the hallucinations. I explained that they were medication-induced, and Jan had not had a recurrence since she stopped taking that pill. I told Carla the same thing had happened with my former husband when he was recuperating from surgery. She responded that doctors these days felt they had to cover every possible problem. They would just keep an eye on Jan while she came for a two-week trial visit. I described her as sweet and gentle and a worrier. Carla said this had been her impression when she met Jan.

I explain to my sister the change in plans, telling the white fib that they will be understaffed this weekend, therefore want her to arrive on Monday. She asks me what day it is. Friday, I say. Linda will be coming tomorrow, bringing a dolly so she can transport all those boxes of papers to her car. She will also be bringing new clothes for Janeth to try on. On Sunday, she will help pack a suitcase for the two-week stay at Advantage House. I will pick Jan up Monday at ten.

This is too much information for my bewildered sister to process. She calls me a few minutes later, crying out, “How can Linda take me to Advantage House on Monday? She’ll be leaving on Sunday.”

“No, dear, Linda won’t be taking you, I’ll do it. We’ll get there by eleven, and Carla has kindly invited me to have lunch with you.”

“I’m so confused about all this. I can’t seem to get anything straight. What day is it today? I’ve already forgotten.”

Shortly before eight this evening, I make my usual call to remind Jan to take her Risperdal. She returns to the phone with the pill and a glass of water, tells me when she has taken five swallows. Then she says there’s something she wants to ask me. She knows she had two ten-thousand dollar bonds, remembers giving them to Ray for safe-keeping, now doesn’t know what become of them.

“Linda has them. You gave them to her.” She doesn’t remember doing that.

June ninth, 2007, the day I thought I would be taking my sister to assisted living, and all our troubles would be over.

Linda calls at nine-fifteen, still in Maine.

We talk briefly about why Advantage House postponed Jan’s move to Monday.

“She had to go to the hospital because of her cuts and bruises,” Linda says.

Does she think the attacker actually existed?

“Kathie says that in her terror, believing a man was trying to smother her, she could have inflicted these injuries on herself.”

Linda and I discuss the theories about how an intruder could have been on her -balcony. “Mom said he got in by way of a neighbor’s balcony.” I think about how dreadful it would be if the event had happened just as Jan described it, and no one would believe her. We’ll never know. Or we will know when the movie of our lives is played after we die, as Jan has always believed will happen, and she will be exonerated.

I had just put down the receiver when the phone rang again. It was Jan’s friend, Ray, who assumed she would be going to Advantage House today. I explained why the move was postponed.

“Her doctor told the management about the time she thought she’d been assaulted during the night.”

“Thought she’d been assaulted? There’s no doubt about it, she was assaulted.”

Ray then verified everything Janeth had said about that terrifying night. “She had to go to the hospital to have her injuries treated. Her arms were bruised and bleeding, she had terrible wounds on her legs, her face was covered with scratches. . . she was a mess.”

“But how did he get out on her balcony?”

“It’s easy,” says Ray. “The balconies are connected; there’s a walkway all around the building.”

“ I had the impression the balconies were separate.”

“No, you can walk around. I’ve done it, Barbara. ”

I resolve to look again at the balconies. Was it true that anyone could leave one apartment via the balcony and break into another apartment that way? How strange that I had just been talking with Linda about the official explanation that even Kathie believed, that my sister’s injuries were self-inflicted, not purposely, but in the throes of fighting off an imaginary assailant.

I tell Ray he should call Jan now because she’ll soon be busy helping Linda move boxes of papers. I call Jan to let her know Linda won’t be arriving for another few hours.

She is in an anxious mood, her voice tremulous. She has been picturing herself trying to write about life in her new apartment, as I had suggested.

“There is an elephant in the room. I can’t do it, Barbara. I can’t be funny with an elephant in the room.”

I hastened to assure her she could forget about keeping a diary. I had thought it might be a way of passing time, but she didn’t have to take me up on it.

Ray’s coincidental call is amazing. I don’t know what to believe now.

To: Kathie

Drawing by Janeth:

After she’s settled in Advantage House (starting tomorrow), I’m hoping I can persuade my talented sister to join an art class.

From: Kathie

i loved the girl on the swing set. Jan is indeed talented. she should take a class.

Please call me after you settle her in tomorrow.

my fingers are crossed. (try typing that wayyyyyyy).

To: Kathie

She’s settled, and a whole lot has happened that I don’t have time to go into now.

 

I arrive at Jan’s apartment on Monday and find her looking around, all but wringing her hands. “You have to be careful,” she says, opening the doors of the hutch that crowds her narrow hallway. “If you try to shut them without lifting up like this, it won’t work, and the hutch will be ruined.”

I tell her Linda had reported packing her huge black bag with toiletries and leaving it in the bath-room. “We must remember to bring it with us. Do you want to add your hair dryer?”

She has two, so she is faced with a decision she can’t make.

“I don’t know. I don’t know.” I drop the larger one into the bag

“What about your medications?” Jan says yes, she has her medications in the brown satchel. I have brought my cart, so we exit, Jan in charge of Ray’s suitcase-on-wheels, while I maneuver our two carts into the elevator and out the front door.

When we get to my car, my strong sister lifts the suitcase and slides it into the backseat, while I ineffectually wave my hands. The satchels, lifted with ease by her skinny arms, follow the suitcase. I put the two carts into the trunk, and we set off for Advantage House.

Lois, Carla’s assistant, is waiting for us. I give her my car keys, and she uses the hotel-sized baggage rack for my sister’s possessions. When she returns the keys, I put them in my slacks pocket and tell myself to remember I did this.

We take the elevator to Apartment 201. Lois tells us to sit down so she can show us the various documents provided for residents. The new girl in town signs one after another. Finally she is asked what sitting she will want for her meals, the early one or the one an hour later. This is asking her to climb a mental Mount Everest. Jan makes perplexed noises in the back of her throat.

Lois asks her what time she gets up in the morning. My sister thinks for a moment, then says five a.m. I explain to Lois that Janeth had misunderstood my advice about taking Risperdal in the evening. I had recommended that she take it before six, to minimize her water consumption before bedtime.

“She got it into her head that she was to take her medications before six in the morning.”

“You can sleep much later than that,” says Lois. “The first breakfast sitting is at quarter of eight, the next an hour later. Whichever time you choose, for the first couple of days someone will come up to help you find the dining area.” After a consultation with me, Jan chooses the earlier schedule.

A nurse arrives next, to talk to my sister about the alarm system if she needs emergency help, and about how she wants to handle taking her medications.

“We are not allowed to be responsible for this. You can either have Barbara fill the pill dispenser once a week, or our West Roxbury Pharmacy will provide the service.”

This decision is easy—the pharmacy option, no matter how much it costs. Reminding Jan to take her medications is all I can manage.

When the nurse leaves, Janeth suddenly becomes agitated. She just realized that the glasses she is wearing are her no-good ones. Where oh where are the good ones? How will she ever manage without them?

I remind her that she did manage somehow during the months before she found the good ones behind her bed. I might as well try to calm a hurricane. This is a disaster, she needs those glasses. How will she be able to read the tiny instructions on the air conditioner? I tell her I’m sure the glasses will turn up.

“Remember how you thought you’d lost your checkbooks and finally found them in your raincoat pocket?” The reminder does not reassure her. The glasses are lost forever.

“Let’s start unpacking.” While my sister watches forlornly, I unzip the side pockets of Ray’s suitcase, pull out bras and panties from one, a nightgown and flannel robe from the other.

The glasses don’t show up when I unpack the slacks and shirts—some with price tags still attached— that Linda has folded and left on their hangers. I must remember to bring scissors next time I visit. I transport the clothing to the closet; while Jan places her shoes on the floor after asking woefully if I think that’s all right.

I open the brown satchel and with a yaayy, hold up the missing glasses. I don’t say I told you so, as I certainly would have when I was fourteen.

The time has arrived for Jan and me to go to lunch. Another staff member (we have met four since we came through the front door and keep trying fruitlessly to remember their names) leads us to the dining room. On the way we pass an apartment with its door casually left wide open. My sister’s eyes are popping.

“Yes,” says our escort, “some residents leave their doors open.”

“Oh my,” says Jan.

We sit at a table set with silverware and maroon linen napkins in tortoise-shell holders. Faith, our waitress (faith ‘n’ begorrah, that’s how I’ll remember this one’s name), gives us a choice between broiled scallops or baked ham. Jan recoils at the mention of baked ham, so we both order scallops. A cup of yummy cream of mushroom soup precedes our meal. Yummy is what Jan calls it as she finishes every drop.

I marvel as I watch my string-bean sister polish off her entire meal and marvel again when I see her choose a Pecan Pie from the dessert wagon. Is this a pleasant dream or is Janeth waking up like an enchanted princess from her era of benighted food deprivation? The ice cream on my warmed apple pie tastes cool and real.

Lois, Carla’s assistant, shows us the way back to my sister’s apartment. “Janeth, I promise you there isn’t a chance in the world that anyone will come in here when you’re out. All your belongings are safe here at Advantage House.”

I pray that my sister will believe this. Before she departs, Lois tells her that a nurse will be coming to evaluate her.

“Jan, there’s something I want to talk over with you,” I say. We sit down and she listens. “Dr. Demarko said some things in her report that caused the management to change your permanent move into a temporary one. For instance, she said you were excitable. You and I know you had good reasons for getting excited during your visits with her. Like when she was angry about your need to use the bathroom.” Janeth nods.

“She also wrote that you would need to wear an identity bracelet in case you wandered out of the building. You and I know this is ridiculous. Just stay calm and be your sweet self when the nurse asks you questions.”

There is a knock on the door. Helen Lawson has arrived to evaluate Jan’s mental health. Now I’m the one to listen while Helen starts her questions. When were you born? Jan tells her correctly. Do you know what day this is? Monday, says Jan. What month? June. The date? The eleventh. Who is the president? Bush. Where were you born? Boston. Where were you brought up? Newton Center.

“Could you tell me what the complete date is for today?” “June eleventh two seven.” Oops, I think, but keep a poker face. So does Helen.

“What do you like to do in your spare time?” “I like to read.” “Good, we have a wonderful library for you to browse in. Maybe you and Barbara will want to check it out.” We nod at each other.

“Since you’re an artist,” Helen continues, “I am going to give you a picture to copy.” (I had shown Helen my sister’s charming drawing.) Janeth starts slowly and carefully drawing lines that imitate two adjoining lopsided squares. Her copy is smaller but perfect in every other detail.

“You’re in good shape!” Helen smiles. “Tell me again what today’s date is.”

“June eleventh, two-thousand seven.” I silently cheer my sister.

When the nurse leaves I turn to Janeth to hug her and congratulate her.

“I’m glad you warned me,” she says. “I was calm, wasn’t I?”

“Absolutely. You get an A plus. You done good.”

We decide to look for the library. We stand outside Janeth’s apartment, uncertain which way to turn. The woman who has the beauty salon almost across from 201 is saying goodbye to her customer. She asks if she can help us, then accompanies us all the way to the library.  I know Janeth likes non-fiction, so I track down that section. I see a copy of The Perfect Storm, and tell Jan how frustrated my sons were when it was published. It was the very book they wanted to write about the life of a commercial fisherman.

“Okay, I’ll try it.”

I’m pooped and aching and ready to go back to my sister’s apartment to get my pocketbook. Slinging it over my shoulder, I prepare to leave by saying the magic words, hugga, hugga. Jan says she’ll come with me to the lobby.

We embrace at the front door of Advantage House, and then I open my pocketbook to look for my keys. I can’t find them. I must have left them in Jan’s apartment. We trek up the stairs, and I look everywhere for my keys. I’ll have to see if someone turned them in at the front desk. Little sister follows me on my fool’s errand. No one has turned in any keys.

Back we go to Number 201. I look harder this time; I even look in my pocket, which is where they are. I remember telling myself to remember.

Since I’m walking a lot more than usual, the pain causes me to pant like a woman in labor. I don’t think Jan can hear me. All these trips were caused by me. She isn’t the only forgetful sister.

Jan and I hug and kiss again at the front door. As I walk toward my car, I realize I forgot the plastic bag that had the Advantage House documents in it and something else important, I forget what. When I return to the second floor, Jan is coming out of her apartment with the bag.

“Oh, thank goodness! I didn’t know how I’d ever find you.”

Farewell embrace # 3 at the front door. When I get home, I call Jan and ask her if I’d left my library book. Yes, she says. I ask her how she’d feel about a roommate.

She chuckles half-heartedly.