Janeth on the left, Barbara on the right
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.
CHAPTER 3 : LOSING CONTROL OF HER LIFE
Jan has a reservation for a trial week at Advantage House, starting Saturday, June ninth. Linda will drive down from Maine to bring her mother there, along with her medications and whatever else she needs.
Janeth called with a new concern. “I think my flickering lamp table is such a dangerous fire hazard I ought to cut the plug off.”
“How about wrapping the plug with tape, in case the lamp is fixable?”
“But suppose some nut got hold of it and peeled off the tape and plugged it in?”
“Could you put it in the hall and have it taken away?”
“I keep things on the attached table.”
“Okay, you know better than I about what your situation is. Do whatever you think is best.”
I call her after dinner. “I cut the cord,” she says.
“How’s the baby?”
“How’s the baby?”
“Are you saying b-a-b-y?”
“Yes, you said you cut the cord, so I was wondering how the baby was.”
“Oh hah, hah, hah, now I get it. You’ll have to write that down and tell Linda.”
Janeth had an electrifying tale to me tell about her lunch with Ray. He assured her she could safely leave her cart in his van. She was uneasy but reluctantly followed him into the restaurant.
“When we came out, there stood the van with its side bashed in. We couldn’t open the door, but I could see that the cart was gone.”
“I’ll bet it wasn’t Ray’s van.”
“How did you know that?”
“Because you don’t sound upset enough.”
Yes, Ray’s car was parked next to the damaged one, the cart untouched.
She tells me she bought a big jar of honey. “I’ve been trying to pour some of the honey into a smaller jar. Now I have to worry about critters being attracted to the jars. I put them in the vegetable bin.”
“You could probably store them safely in a zip-lock plastic bag.” “Plastic?”
“Yes, the critters won’t be interested in eating plastic.”
“But they are so tiny, the opening would look like the Grand Canyon to them. I’ve seen them, Barbara. I cut them in half.”
Cut them in half? I say okay, the honey will be fine in the vegetable bin. Why do I argue over these trivialities?
“How was Nell’s visit?”
“She didn’t do much of anything except walk up and down the hall, braying the news about Advantage House. I had to shush her.”
“Going to Advantage House for a week will be an adventure. Why should you be embarrassed about it?”
“I’m not embarrassed, Barbara. I just don’t want the neighbors knowing where I’m going. It isn’t their business.” That’s my sister’s mantra and her motto.
At 12:30 the phone rings. “Hellooooo,” drawls Linda, with that big grin she has in her voice.
“Aren’t you the smart one to get here so early!” Half an hour later, we met at the Ninety-Nine Restaurant, according to plan. Jan is overwhelmed by all the choices on the menu,
“I’ll have what my sister is having,” she finally says to the waitress. I bring up the subject of the apartments at Advantage House. “Janeth thought the one-bedroom size was much too big, so she’s getting a studio.”
“What I couldn’t understand in either apartment,” Jan says, “was the size of the refrigerator. It was no bigger than a dot. How can you keep things in something the size of a dot?”
I remind her that she’ll be getting three meals a day when she moves in. She still shakes her head over the practically invisible refrigerator. It’s intriguing that the exaggeration is in a different direction from the usual. There are thousands of letters from Ray, papers that would take thousands of years to sort through, a refrigerator no bigger than a dot. I wonder if this skewing of time and size is a typical symptom or if the vastness and the smallness of things are my sister’s original quirk.
The Filet of Flounder with Rice arrives. The bright green broccoli is barely steamed.
Janeth has a struggle cutting the broccoli stems into bite-sized pieces. She has a struggle chewing them.
“Forget the stems, Jan, just eat the florets.”
She eats the florets. She has a few bites of flounder. Then she picks up the lemon wedge, carefully removes the seeds and eats the lemon to the rind.
“This is the sister,” I say to Linda, “who was crazy about maple sugar. It always seemed too sweet to me, but she loved it.” I give Jan my lemon wedge.
The dessert is as gloriously huge as it looks in its photograph. Linda serves a portion for her mom, taking care not to include any chemical-filled whipped cream. She and I accept the risk, and we all make short work of the sundae.
Linda and Janeth follow me to Advantage House. Marketing Director Carla Thomson greets us and gives us a talk about the many perks that are offered to residents. When she is ready to show Linda and Jan an apartment, I leave, partly to spare my back and partly to get my leftovers into the freezer before they overcook in my car.
Later I call Kathie’s house, where Linda stays when she drives down from Maine.
“So what did you think?” I ask my niece.
“I was very impressed with everything about it,” she says. “Even the grounds are lovely.”
“Did Carla show you a studio apartment?”
“No, Mom has changed her mind about the studio. She wants a one-bedroom like the one she’ll be staying in temporarily.”
“That’s what I wanted her to have from the beginning. I am so glad.”
“I asked if there are ever sets of furniture left behind by relatives. Carla said yes, they often supply furniture.”
“How wonderful! Will Janeth be renting it?”
“No, she’ll buy it. It will be expensive but much easier than trying to make do with what she has. They sell the furniture that’s in the apartment for the temporary stay. Then they buy another set to take its place.”
“Do you think your mom will be as suspicious of the staff at Advantage House as she has been all these years of the maintenance guys?”
“The paranoia will move right along with her, I’m afraid. When we came back to her apartment this afternoon, she pointed to the open closet slider. She was sure it had been closed when we left. I said, `No, Mom, when I was pushing your cart, I slid the door open to make it easier to get by the stuff in the hall.’
“Then she checked the kitchen counter and thought her prescriptions weren’t the way she had left them. They were tilted.” Tilted? “Yes, t-i-l-t-e-d, tilted.”
Linda laughs the husky, exuberant laugh that is part of her charm. “Mom is always convinced that someone has been snooping whenever she’s away for a few hours.”
“Maybe things will be different at Advantage House.”
I call Jan, curious to hear her version of the afternoon. Mirable dictu, she says the whole thing is exciting. This is the first time I have heard such a positive word from her lips since I came back into her life.
“But Barbara, I’m going to do something you won’t like.” For a moment I was crest-fallen. “I don’t want to have any pictures on the wall.”
“That’s okay,” I say, relieved that she isn’t planning to skip two meals a day. “It’s your apartment, you can do anything you want.”
I collect my sister for our shopping trip. Before she came down to the car, she said on the phone that she would be bringing her cart, not just to put it in the backseat but so that she can lean on it. By the time she shows up, I have figured it out. This is what she’ll tell the management at Advantage House when she is obliged to go to the dining room for her meals. She would be too fearful to leave her valuables in her apartment. For someone afflicted with memory loss, she can be downright resourceful when she feels threatened.
We find several petite shirts and slacks that Jan tries on, then opens the dressing room door to see what I think. What I think is God, she is so skinny and bony, she has nearly starved herself to death. She takes my hand and puts it on her leg to show me how the skin feels. It is dry and scaly like a lizard’s. That, too, must surely be caused by her strict adherence to no fat, no sodium, no sugars.
Ray drives Janeth to her appt with Dr. Demarko . The office calls me to say she will have to be tested for tuberculosis before the doctor can fill out and fax the medical information to Advantage House.
“You need to make an appointment for the test and another appointment for the result two days later.”
“How can all this be accomplished in a week?” I ask. It’s routine, I’m told. Her appointments are on Tuesday and Thursday at eleven. I call the Visiting Nurse Association to let them know Janeth will need a nurse to take her to these doctors. Ray’s going to be away, and I can’t do it.
I finally reach Carla Thomson and am telling her all this when she says, “Would you like to have your sister move in on the ninth and just stay on?”
I have never swooned in all my eighty-six years, but this one was close. “Yes!”
Carla thinks it can all work out. It won’t be the same apartment Linda and her mom looked at, but it will be a similar furnished one-bedroom. Janeth can decide what furniture she wants to buy after she’s settled. Dr. Demarko will fax the medical form on Thursday, and someone from Advantage House will go to Apt 822 to interview Janeth on Friday. I’ll take her to Advantage House Saturday morning along with her cart and a few important items, such as her medications, some clothes and a toothbrush. Linda will bring more belongings, like sheets and towels, when she gets to Quincy in the afternoon.
Jan calls to tell me she has stuffed a trash bag with a huge number of letters from Ray and letters about Mr. Basteri, the bastard who swindled her long ago. That episode would fill a book.
“The bag is so heavy,” Jan continues, “it’s even too heavy to drag.”
“Could you divide the stuff into two bags?” She says this would be very difficult.
“Okay, dear, leave it as it is, we’ll work something out.”
I return to reading John Updike’s Terrorist. I am drawn to three of his characters, find myself wishing the book were fatter, so it would last longer.
The phone rings. My sister tells me how poorly she’d slept the night before, and now she will probably be up until eleven, trying to divide the contents of one trash bag into two.
”DON’T DO THAT, JAN! We’ll manage all these things somehow. Go to bed and get a good night’s sleep.”
I bring Jan some groceries. She shows me two trash bags full of papers from boxes that had been stored under her massage table. Then she leads me into the kitchen and shows me what is stored there. Stacks of large rectangular boxes are amassed on shelves across from the counter. “Four here, four more next to them, that’s eight, one-two-three-four more, and four more at the end. Sixteen boxes full of a muddle of papers I have to look through.”
“Twenty years of your life,” I say, as overwhelmed as she is. “Linda said she would take bags of papers back to Maine and look through them for you.”
I think of how lucky I am to have Kathie and Frank’s basement for the storage of seventy years of my life. They may be better organized than Jan’s, but after I’m gone, who cares if a rubbish truck carries them away?
I’m on a high, anticipating a diminishment of all the concerns created by my sister’s illness. Is it possible that in eight more days she will be in a place where knowledgeable people will help her and care for her? I told her tonight that Linda thought she’d want to bring the filing cabinet.
“Okay, then Linda can put the contents into a black trash bag and look them over up in Maine.”
“Oh no, there is much too much to put in a trash bag!” Okay, two trash bags. I promise Linda will be watching for anything she’d want to save.
A final call from Jan last night. Is this Thursday, Friday, Saturday, or Sunday? Sunday, I say. And it’s July? No, dear, it’s June. It isn’t July? No, dear, it’s June third. She tells me Ray has brought her a calling card. I know nothing about calling cards. I will soon learn more.
On the way home from Cohasset’s duplicate bridge, I pull into Stop & Shop’s parking lot and call my sister.
“I’m about to get the milk. Do you need anything else?”
Her voice is close to hysteria when she speaks. She says she is almost out of time on the MCI. She didn’t realize she was running out of time. “This is terrible, what am I going to do?”
“What is an MCI?”
“The Calling Card! I’ve been using it for all my calls to you and all my other calls, and now I see that I’m almost out of time. I won’t have any way of talking to you or Linda or anyone else. I’m in a terrible predicament!”
“Jan, your phone will work, just as it always has.”
“No, you don’t understand, I’ve been using the calling card, not my phone, and I’ve used up almost all the time that’s left!” Her voice is frantic and half crying.
I repeat that I’m sure her regular phone will work, all she has to do is try it, and she’ll see that it’s still working. “Do you need anything besides milk?” I ask again.
“Yes,” she howls. “An MCI!” I ask the same question and get the same answer. I buy the milk and stop at home first to find out if I have a call from the South Shore Visiting Nurse. Arnold had said he’d let me know if a nurse would be bringing Jan to her TB testing tomorrow. First, I listen to a message from Beatrice. She says Janeth has to give thirty days’ notice about her move; I should talk to Jerry Barnes in the office.
I call Arnold. Yes, he has a nurse lined up for both days. I ask him to send the bill directly to me. Then I call Jerry Barnes and learn that we will have several weeks to get everything out of Janeth’s apartment. I e-mail this news to Kathie and say we can take our time on the moving job. Maybe The Salvation Army will be our salvation.
Jerry also tells me, when I ask, that my sister is quite right when she says the button for opening the front door is on her telephone. “This is the way the system was set up.”
I will tell Janeth.
I park in front of Southern Artery Apartments, call Jan and ask her to bring down the frozen Meal on Wheels that was not to her liking but will be to mine. Wearing a white shirt and the striped pink pants, she brings down two frozen meals, and hands them to me. She has been noticing her skinny arms, now that short-sleeves season is here. This is why she wants whole milk, “not that I expect it to make my arms look any better.”
She tells me it’s so dark in her apartment, she can hardly see the papers she’s been examining. “You know that lamp, the one that was dangerous? I brought it downstairs.”
“Didn’t you cut the plug off?”
“Well, yes, but it was of no use at all anymore. When movers come, how will they be able to see what they’re doing?”
“They can open those vertical blinds to the balcony. That will let in a lot more light.”
Janeth looks dismayed at the idea of anyone letting light into her den. And tampering with the balcony where she believes a man had hidden and assaulted her in the middle of the night. Tampering with the barricade of shelves in front of the balcony, tampering with the blinds that she always keeps closed. She says something I don’t understand about the screen being bent and the doors not working. I know she feels as if control of her life and her surroundings is slipping away from her.
“Poor darling! It’s so mean, having this happen to my baby sister.”
“It’s so mean, having this happen to my family,” she says, woebegone as a child.
What can I do but put my arms around her and tell her we all love her, we all hope she will be safe and happy in her new home. “I hope so, too,” she says so softly I can barely hear the hope.
I call Jan from home and tell her there’s something I’d forgotten about.
“When I was talking to Jerry in the office, I asked her if there was a buzzer for the front door in everyone’s apartment. She said it wasn’t on the wall, it was connected to the residents’ telephones. So you were entirely right, Jan. You kept trying to explain, and I didn’t listen.”
She doesn’t rub it in. “You mean everyone else has a telephone like mine? Huh! That’s amazing! I never would have believed that.”
Then she tells me she got so hungry, she ate what was left of some baked beans that had been in the refrigerator for ages. I ask her about the seafood salad she mentioned a few days ago.
“Yes, I was so hungry I had some of that, too.”
“And are you feeling okay?”
“Yes, so far.”
I call her again just before eight to remind her about her Risperdal. She takes the pill while I wait. Then I remind her about the appointment she has tomorrow at eleven. “A nurse will be coming to pick you up.”
The usual despair sets in about what she will wear. She guesses the same pink slacks she’s worn so much, she’s almost worn them out.
“You have a nice cool nightie in one of those bureau drawers,” I suggest, aware that she will doubtless wear the pink perennials to bed.
“That would mean I’d have to get out of what I’m wearing and into the nightie. Then in the morning, I’d have to get out of the nightie and into the slacks. I don’t have time to go through all that.”
Oh, I see. That explains everything I’d wondered about. She has her reasons.