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.  Barbara sent us her story (all 22 chapters!) to publish so that others may hear it and learn from it.  It is about her interactions 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 1: THE INSULTS OF AGING

My younger sister Janeth and I had a sibling rivalry that extended well into our adult years, and after a particularly painful disagreement, I said to her, “Janeth, it’s bad for our health to get this upset. Let’s stay away from each other for a while.“

The first few months without my sister were so peaceful, I made no effort to contact her. The months became swiftly passing years until a greeting from my niece appeared on my computer screen on January 1, 2007. Linda asked if I remembered telling her about my biggest fear on my eighty-fifth birthday. “Mom has it,” she wrote. “The dreaded Alzheimer’s.”

Suddenly the lifetime of disagreements with my sister seemed unimportant in the face of what she and Linda were dealing with. I Googled the disease and learned that someone contracted it every seventy-one seconds. There were hundreds of thousands of cases just in Massachusetts.

I thought of the last-straw angry scene that alienated me from my sister. Maybe she would have no recollection of our falling-out. It would be ironic if she only remembered that she hadn’t seen me in years. If I were to call her, would she know who I was?

I wrote a note, sealed it and put it by the door, ready for mailing. Then I stopped, reeling from memories of past misunderstandings. I could picture Janeth interpreting any attention from me after this long silence as evidence that I was gloating over her plight. She once startled me by saying she figured I was happy about the problems she was having at the time. I hoped and prayed that things would be different now, that she would accept my written message as deep-down sympathy and caring. I took the risk and sent it.

Janeth called, and we had an hour-long conversation. She told me how much it meant to her to see the words, “Dear Sister.” We soon found that aging had insulted us in numerous similar ways. She had shrunk three and a half inches, I had shrunk four and a half. To avoid pain she had to bend forward when she walked and so did I. We hated the veins that crawled on our hands like blue worms on crinkled parchment.

She described other trials and worries and misfortunes, including a fall that opened up a bruise that “popped like a grape” and began bleeding in the market. When it happened, she had the most important papers of her life in a little cart she brought everywhere she went. An ambulance came so promptly while she was pressing on the injury that she was carried off, protesting wildly that she needed her important papers. By the time she was delivered to the hospital, still wailing, she was diagnosed as delusional.

She told me the papers in her cart included Ray’s old love letters, and she knew without question why things became so quiet every evening. The nurses had started reading the letters and were so fascinated, they kept reading. Her cart was returned when she left, “but the contents were in a jumble.”

I wondered how much of this was accurate and how much the paranoia that Linda and my research had prepared me for.  Janeth confessed that she was practically a recluse because she didn’t want people to see how old her face had become with the awful little curl under her nose. Ray was loyal and helpful but had troubles in his own life.

Clearly my sister needed a lot of in-person support that my niece couldn’t supply, what with her job as a social worker, the 3-hour drive from Maine, and her daughter Tiffany’s special needs. I resolved to do as much as I could to help.

I saw my sister for the first time in eight years when I picked her up to take her to a doctor’s appointment. I hardly recognized the little person who emerged from her building. What had become of my tall, slim, stunning sister?

She moved towards me, pulling a folding cart stuffed with two satchels and a large black pocket-book. “We have to bring this,” she said. “It has all my important papers. If I leave them in my apartment the snoops will sneak in and read them.” Together the two of us wrestled the cart into the back of my car. We got into the front seat. It had been a long, long time between hugs.

We sisters must have been a quaint sight walking along the hospital’s corridors, with Jan very stooped, and I, too, unable to straighten up as much as I’d like to. A pair of head-turners 40 years ago, metamorphosed by Father Time’s sorcery into squashed versions of our former selves.

After Janeth’s appointment, we moved our conversation, which had become intensely personal in the doctor’s waiting room, to an area where we could talk more privately. “I have become ugly,” she said. “NO,” she held up her hand, “don’t say anything, I have a mirror.”

She told me she worried a lot about her privacy, another reason she was so isolated and another reason why she took the cart with her on the rare occasions when she went out. She suspected a maintenance man invaded her apartment when she was away, ferreting out information about her past. Changing the subject, I showed her an old photograph with Jan on the left, Mother in the middle, and me on the right. We were young and blooming, Mom more than a decade younger than we were now.

She looked, but I saw the sadness glinting in her eyes. For the first time in eight years, I very much wanted my sister in my life. I wanted to do everything I could to improve the Catch-22 existence that blocked pleasurable excursions we might have together.

We used to have happy times, meeting for lunch or dinner, but not since our falling out. Janeth has been literally starving herself for years because of her strict avoidance of sugar, salt, and fat. On Thanksgiving, Ray took her to a buffet in a restaurant she had formerly enjoyed, “and all I could eat was an apple.”  I didn’t see how she could go on living alone, subsisting on raw vegetables and fruit.

What would she think if we tried to persuade her to go into assisted living? How would this ever be accomplished? What would such a place be like?

 

CHAPTER 2: IF IT ISN’T ONE THING IT’S TWO

With some trepidation I showed my sister the materials I had obtained from Advantage House in Hingham, an assisted living facility ten-minutes from my condominium.

“Jan, I’ve had some delicious mid-day dinners at the Advantage House in

Weymouth, where my former neighbor Kathie Carr has lived for years.”

I wasn’t surprised when she said, “I don’t think there’s going to be anything on the menus I can eat.”

I confessed to Kathie, “I’m afraid I said, “Then you’ll starve.”

“Oh dear,” said Kathie, who would never say anything like that, even in jest. We had looked at a menu in the brochure a couple of weeks ago, and yes, for breakfast there were items like eggs and bacon and sausage—no-no’s for Jan—but there were also cereals and toast and fruit. As for the mid-day dinner and the evening supper, Janeth said unhappily that she supposed she’d just have to change the diet she has adhered to so carefully. I tell her the meals would be the kind that Kathie and Frank and I have been eating for years, and they haven’t damaged our health.

She says, “What about . . . “ then stops. I know what she’s thinking. She’s thinking about my lumpectomy decades ago and the 30 days of radiation. I had no side effects except for irritation over the daily drive to Mass General. And I didn’t blame Peter Pan’s Peanut Butter for the inconvenience.

Tonight I decide to prepare “Skillet Chicken Breast with Vegetables,” a recipe I found on Google. I will double the ingredients so there will be enough for at least two dinners. Red wine is an ingredient in the recipe; do I have any red wine? I look in the cupboard and pull out a bottle of Sauterne. It looks red. My sister will approve because red wine is good for your health, like dark chocolate. The bottle slips out of my fingers. It doesn’t break, but it spills gorily and requires a tedious cleanup.

When I have finished using my foot to push a large square of terrycloth around the floor (it’s too painful to mop it up any other way), I see a black sort of doodle that has resisted my efforts to eradicate it. Is it something in the wine bottle like the mother in raw vinegar? I look more closely. No, the doodle is not superficial; it is a permanent scar on the white tile. I say to myself irrationally: “It’s HER fault!” Then Kathie calls. I tell her about my disaster in the kitchen but don’t tell her I blamed Janeth. I say I’ll put a Band-Aid on the scar when company comes.

All the hours on the phone, all the forms sent to banks along with a copy of my Durable Power of Attorney, all Janeth’s fears that her savings are gone from the dozen different annuities she has, all her worries about having been robbed. . . all these concerns are beginning to be resolved. With three checks made out to Janeth Black, I call her and say we’re going to the bank.

She comes down to the car, and we set out. When we get to the bank, we sit down at the desk of a woman named Laura, who soon finds that she needs to keep repeating herself. She has trouble understanding our concerns, and we don’t understand her at all.

I announce that we are here to deposit three checks to my sister’s account. Jan supplies her social security number and date of birth. Laura looks at the screen.

“There has been activity in the account, and the balance is quite low.” Jan and I swivel our heads and exchange looks—hers panicky, mine puzzled. It turns out this was the checking account we’d reserved for Jan’s Social Security deposits.

“She has another account,” I say, and give Laura the information. Laura looks at the new information on her screen.

“A check was returned to us on April second, due to insufficient funds.” I hear the tsk-tsk in her voice.

“I know that. I forgot to deduct the check my sister gave to her lawyer.” Sheesh, it could happen to anyone.

The balance is reassuring. Laura asks Jan to endorse each of the checks and write “For deposit only.”

“Why do I do that?” Jan asks.

“If you were to drop a check in your travels, no one could cash it as long as you write those words on the back.”

On the way home I’m thinking about what a novice I am in the world of finances. Jan says out of the blue, “You’re so smart!” I tell her what I’d been thinking, and we laugh. Back at her building, she retrieves her cart from the trunk, and we hug goodbye.

I call Jan to find out how things went with her dentist appointment.

“The new dental assistant had an odd quirk. She kept saying, `How does that sound to you?’ It was such a broken-record question that it drove me crazy.”

When the dentist finished cleaning Jan’s teeth, she said another appointment would be needed to take x-rays. “How long does that take?” About five minutes. Jan said, “I can last that long, let’s do it now.” The assistant said, “You’ll need to open your mouth very wide. How does that sound to you?”

Janeth calls to tell me again about Ray’s eighteen-page letter, this time supplying details.

“He compared the way he felt about me to a movie he’d seen.”

I listen to Ray’s account of the movie the way mothers listen to their children giving a scene-by-scene narration of a film’s plot. Not attentively enough to be able to repeat much of anything, if asked.

Jan’s conclusion, “He is a man who has loved me and still loves me more than any man in the world ever loved me.”

“You’re lucky to have such a good, helpful friend. What do you want done with letters like that? Do you want them to go to Linda?”

Jan utters a big OH! For a moment I think my question has offended her, but no, she is in shock for a different reason. The balcony curtain that shields her from prying eyes in her eighth-floor apartment has just fallen down. She is distraught about this loss of privacy.

“You said Ray might be coming on Sunday. I’m sure he can find a way to put the curtain up again.”

“But how could such a thing happen?” I know what she is thinking. Someone could have come in while she was seeing the dentist and tampered with the support for the curtain.

“Maybe Ray jostled it when he was working on your TV.”

“That’s impossible. The TV is way across the room from my balcony.”

“Well, Ray can fix it, I’m sure.”

Jan says, “Remember what Vaughan used to say? `If it isn’t one thing. . . .’”

“It’s another,” I supply.

“No,” says Jan, “If it isn’t one thing, it’s two.”

I like Vaughan’s version better. I tell my sister I love her and we exchange the hugga-huggas that end a long phone call. This is the best way for me to be a caregiver, now that I’m trying to avoid too much walking. Thank heavens for Ray.

Jan continues to worry about even a trial visit to Advantage House.

“How can I bring my awful bed that hurts me when I bump into the edge?” she asks. “What would I do for furniture?”

“The apartment comes completely furnished with towels and sheets and the works. You won’t have to bring a thing. They always have one ready for what they call respite. If a family is going to be away for a couple of weeks and can’t take care of a relative, this is the solution.”

Jan is still upset about her destroyed privacy. “My curtain has fallen down.”

“I know,” I said. I was on the phone with you when it happened. Is there a building with an eighth-floor apartment that faces yours?”

“What do you mean?”

“I mean, if you look out that balcony window, can you see anyone with a window facing yours?”

“I never looked, Bar-ba-ra!”

“Try looking now.”

“But people can get up on the balcony like the man that assaulted me. They can get up on scaffolding when the building is being worked on.”

“That was months ago. It isn’t being worked on now, so your privacy shouldn’t be a concern. Anyway, didn’t you say Ray might be coming tomorrow?”

“Ray? There’s no way he can fix it properly. It will need new fixtures.”

“Okay, call the office on Monday and tell them about your problem.”

“They aren’t going to be able to do anything with that big chair in the way and all the other things in the way.”

“Professionals know how to work around the furniture. Just think of men who come in and put new carpeting down. Think of the sofas and wall units and tables and lamps they have to get out of the way.”

Jan finally says she’ll call the office. “I’ll just have to live with it for two days, no privacy at all for two days.”

I say, “You hate living there, don’t you!” Yes, she says, she hates it.

“We’re going to get you moved out as soon as we possibly can.”

Jan calls to tell me Ray has worked on the curtain rod.

“He did a pretty good job, but the curtain is a little shorter than it was before, so there’s a peek-through opening at the bottom. I gave him an atta-boy anyway.”

He took her to the supermarket after he fixed the curtain.

“We were able to find some really cheap tonic with quinine, only eighty-nine cents for a big bottle. I’ve rinsed out a Polar tonic bottle very carefully and thoroughly because there isn’t room in my refrigerator for the eighty-nine cent one. I’m going to pour tonic from the big one into the smaller one. Do you think it’s safe to leave the big bottle on the counter after I’ve opened it?”

I say it’s probably okay for a few days. She’s going to take the chance—it was only eighty-nine cents; if it goes bad she’ll throw it out.

Jan’s fears for her security continue. I visited her today, parked in front of her building and called to tell her to meet me outside. I walk over to the small park nearby. It’s a beautiful day, about sixty degrees; a man is sitting on a bench, reading the paper. There are other benches, but I’m not there to sit down and enjoy that stranger, the sun. I’m there to look up at the top floor where Janeth’s apartment is. An upward glance makes it clear that no one, even on a very long ladder, could possibly see into her living room.

When she comes through the door, I take her arm.

“I want to show you something, Jan.” She comes with me to the little park. I turn her around and point to the top floor of her residence.

“Look, you don’t have to worry about anyone peeking into your window.” Janeth stares upward for a moment.

“They can if they’re on my balcony,” she says, her voice rising. The man with the newspaper looks up. “Have you forgotten that I was assaulted in the middle of the night by a man on my balcony?”

“But that was back when there was scaffolding in front of the building. Now that there isn’t any way to climb onto the balcony, you’re safe.”

“He can get onto my balcony another way, there’s a place….a place….up there where those white columns are, there’s a place. . .I don’t want to talk about it!”

“You don’t have to, dear.”

As we walk back toward the building, my sister tells me again in a loud voice that a hand had seized her and wrestled her to the floor. Bystanders stare, as I try to calm her.

“That must have been awful! I remember asking you how he got out on the balcony, and you said, `He came up on the elevator, of course.’”

“I didn’t say ‘of course! That was just someone’s guess. Everyone was making guesses as to how it happened.”

I do what I should have done much, much sooner: change the subject.

“I’ve been thinking about the patches the neurologist gave you for your pain. I’m wondering about the back pain you have if you try to stand up straight. I’d love to know if putting patches on your back would relieve the pain.”

“I don’t even know how to use them,” she says helplessly. “I don’t understand the instructions. It says to leave it on for twelve hours, and sometimes I find myself taking it off at six o’clock, sometimes at eight. It’s all just too confusing!”

“When you move to Advantage House, there will be nurses to help you keep track of things like that. I do hope this will happen soon.”

Jan calls, tells me a social worker named Nell is there and is recommending an assisted-living facility in Quincy, Hancock House. I am irritated that Nell is complicating matters but try not to show it.

“Jan, you’re on the waiting list for Advantage House, and it’s only ten minutes away from me.”

Jan calls again after the social worker leaves. She says she doesn’t like having Nell know that she might be moving. “It’s my business, nobody else has to know.”

“You’re such a private person, Jan. Moving to Advantage House isn’t anything you need to keep a secret.”

“That’s what I’d like to do, keep it a secret.”

I ask how the visit with Nell went.

“We just sit here, not knowing what to say to each other. She’ll be paying her last visit next time.”

“Didn’t she try to help with anything?”

“I wanted her to call in a prescription for me, but she said she doesn’t do that. She did say that when I dispose of the vial, I should peel off the information on it. I’ve been trying to do that. It’s really hard to do.”

“Peel off the information? I never heard of such a silly thing! Why did she tell you to do that?”

“Well, I guess if someone sees the writing on the label, they can steal your identity.”

“That’s absolutely crazy! Just put the empty vial in the chute and down it will go with the rubbish from all the other residents. Wait till Kathie hears that this woman is adding to your worries with talk of identity theft! That’s the stupidest thing I ever heard!”

Jan’s voice is a half-shriek as she says, “I didn’t say Nell said anything about identity theft! I just figured this was why she wanted me to peel off the information!”

“Oh. Well, I don’t know why on earth she told you to do that, but I’m sure you don’t need to.”

“That’s what she says when she advises me to do something. She says I don’t have to do it.”

“Do you have a prescription that’s running out?”

“It has six or seven days left. Nell said I’d have to call Baxter’s and then call my doctor to get her approval. ”

“The pharmacist will do that for you. I’ve done that a million times, called in a prescription, and the pharmacist says it’s expired and he’ll call the doctor.”

“It’s all just too much,” says Jan.

“Give me Baxter’s number and the number on the prescription, and I’ll do it for you.” When we finally hang up, I’m exhausted, and I’m sure she is more so.

I call Jan again at six, wanting to be sure she is okay.

“I’m trying to take the leaves off my Romaine before it’s rotten.”

I ask if she knows to separate the green part of the leaves from the hard, tasteless white spine.

“Yes, the part that looks like celery I put in the toilet. I have a lot of deli stuff in the refrigerator, but I don’t know which I should use up first. There isn’t any date on the cartons.”

“You’ll have to use the smell test.” She laughs, but during the rest of the call she sounds forlorn and lost, as if she doesn’t know what to do at the moment or at any moment in the future. I wish I could put my arms around her and comfort her.

Linda is in Janeth’s apartment, helping her get a laundry done and working to pare down the paper mountain. I think at this point the mountain may be more like the Blue Hills. I have a hill of my own, forms to be filled out by her doctor and by me, in readiness for the move to Advantage House.

People who have stayed there enthuse about how good the meals are. The trouble is, good food is not a turn-on for Janeth. She is suspicious of anything that has additives and preservatives, having read an article claiming that substances like . . .

I just looked up the latest on additives and preservatives and find my sister has good reasons for being suspicious. This will be my Mother’s Day gift to her—admitting I shouldn’t have been so sure she was mistaken about the notion of chemicals in food.

Jan was amazed at how much Linda accomplished. “I just trusted her with the papers, and a big bag of them was taken away. And the trampoline is gone. Linda told me that trampolines were good exercise for the mentally impaired, and Tiffany had used one when she was younger. I said if it might help some child, she could take it.”

This was my niece’s most diplomatic achievement.

~~~

Another frantic call. “Guess what I’ve done now! I left the patches on my leg all night. They’re only supposed to be on twelve hours! How could I be so stupid?”

“Jan, it wasn’t stupid, it’s perfectly understandable when you consider what an unusual weekend you’ve had. Dinner with Kathie and Frank at the Marriott Saturday, dinner with Linda Sunday at the Hearth & Kettle.”

“It’s good of you to think up excuses for my craziness.”

Kathie and I exchanged a series of e-mails. She is concerned about the patch, thinks Jan should discontinue its use, will do some research. She learns that the patch Dr. Martin prescribed is Tylenol, which isn’t as strong as others.

We both know that Jan’s use of the patch is a futile exercise. It will have no effect on the infection she is convinced she got from Dr. Martin’s dirty fingernails. The scene of the alleged crime shows not even a bruise, just a few pink spots on the back of her leg.

~~~

Linda predicted that her mom would come up with something critical, despite her hours of work. She was right. I stopped briefly at Southern Artery Apartments today, meeting Jan in the office so copies could be made of her insurance cards for her respite stay. Then we went up to #822 to see how her apartment looks with the trampoline gone.

“This is just wonderful,” I say. “It’s a big improvement.”

“But I’m worried. I’m afraid Linda has thrown out a stack of envelopes with friends’ addresses on them.” She demonstrates what the stack looked like, outlining them with her hands.

“She was working so fast, I just tried to stay out of the way and trust her not to make any mistakes.”

“The letters may still turn up. “

“They weren’t letters, they were envelopes!” she cries. “How can I write to my friends if Linda threw their addresses away?”

I suddenly remember I have something to do at home, such as calm down. I say hugga hugga and take my leave.

A couple of hours go by while I work in my study, with part of my mind wondering if I should call Janeth. The phone rings. She says she wants to apologize.

“You don’t have anything to apologize for, Jan.”

“Yes, I do, but those envelopes were vitally important to me. Back before Wally died we had an address book, but after that I never kept addresses in a book where anyone could see them. It was nobody’s business who my friends were. I just saved the envelopes and planned to write some letters after I retired. Now that I’m going to Advantage House, I’ll be retired and I’ll have time to catch up on what’s happening with my friends.”

“Janeth, we’ve reached an age where we don’t have very many years left.  It’s time to let go of things.  We should focus on what’s really important.”

“Old friends aren’t important?”

“Not if it means hurting Linda’s feelings by finding fault with her after she worked so hard to help you.”

Amazingly, she listens to me and says nothing further about the envelopes.

 

Continue to Chapter 3.

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