Alzheimer's is the cruelest of diseases and I am too old to be a caregiver. Maybe I've said that before. I'll say it again. I am too old to be a caregiver. A woman called me this evening, referred to me by Ted. She is going to come and vacuum and dust and polish and clean the kitchen floor. I'll pay her whatever she asks. I can't even dust because walking around is so painful. I do manage to keep playing Duplicate Bridge on Mondays and ordinary bridge three times a week. On the Monday competition, sometimes partner and I come in first; sometimes, like today, we are the lowest of the low. But the mental exercise will keep me from getting Alzheimers, I hope and pray. And I'm always comfortable sitting down. That's the one good thing about spinal stenosis..At the Stop and Shop today, I learned they had only two motorized carts, and a man was sitting in the unused one, working on his scratch tickets. In my head I was saying, get the hell out of there, I need the cart more than you do. By the time I got home I was whimpering like a whipped puppy as I unlocked my front door.
I haven't seriously considered surgery before because I didn't see how my sister would manage during my recovery. Then I realized she could go into assisted living temporarily. A friend has recommended Advantage House in Hingham, ten minutes from Weymouthport.
[Had surgery in 2002. By 2012 the stenosis had returned. At ninety-one, the only recourse is to ignore the pain, walk bent over as if I were impersonating an old lady, and take baby steps a la comedian Tim Conway. Very funny, Mr. Conway.]
I call Janeth after I finish my supper. She tells me what a terrible day she has been having.
“I can’t remember anything! The visiting nurse drew up a schedule for my pills and then I put an X in the wrong place and had to scratch it out. I couldn’t remember whether I’d taken my Risperdal or not. Finally I took one but then I thought I’d already taken one. I felt as if I should throw up and I did throw up a little.”
Standing in my kitchen, I made sympathetic noises throughout this recitation, my heart aching for my sister and my back aching for gratis.
“My mind is going, going, gone! It’s been going for years and now it’s gone. I’m sick, sick, sick! I don’t know what to do about anything anymore. I am DUMB!”
I tell her she is not dumb. The forgetfulness isn’t her fault, it’s the fault of the cruel disease that has crept up on her. I don’t know what the answer is. Does she think it might be time to consider assisted living?
“Oh boy!” This is the phrase my sister uses when she is not happy about something I have suggested. She tells me she spent the day going through papers and she is nauseated by what she reads.
“My stabs at writing drafts of letters are full of crossed-out sentences and insertions and other corrections I can’t make head or tail of. Sometimes I’m writing to a friend who hasn’t heard from me for a long time, and I start out by saying I’m sorry I’ve been so negligent, bla bla bla. I’ve begun throwing out all the nauseating ones. Down the chute they go.”
Later, I was at my desk when my sister called. “Oh dear, I had something I wanted to mention and now I can’t remember what it was.”
“That’s all right. Call me back when you remember.”
A few minutes later: “Now I remember. Tomorrow I want you to lift up my top and look at my spine. Remember how the doctor sent me a telegram warning that my squamus cell carcinoma could go underground?”
“Well, maybe it was a night letter. Anyway, he warned me that the cancer could spread through my body and kill me. When I was in the hospital, the emergency room doctor wouldn’t even look at my spine. He said there was nothing wrong with me and sent me home.”
“Okay, I’ll look.”
I arrive at Jan’s with our St. Patrick’s Day dinners and some groceries because she was running out of food. She has attempted to set up something hostessy, a folding table with cutlery and a napkin in front of a chair at one side of the room, and, on the other side, . . .we finally figure out what to do. A hassock makes do as a table in front of a stuffed chair.
“That corned beef smells good, I’m starving,” she says. And this is the kind, upbeat attitude she has throughout our meal, which we have in opposite corners of the room. She says Ray thinks she should have a table in the middle, with chairs, but she can’t move the trampoline (trampoline?) because it is covered with stacks of papers. I don’t ask why the trampoline is there because I know the explanation will take too long and our meals will get colder than they already are.
Our problem begins when I bring up the first order of business, her telephone bill. It says last month is past due, making the total fifty-nine dollars. She is outraged. She knows she paid her bill last month. She hates it when she gets double-billed like this. She works herself into such a state that I say, “Janeth, I’ll pay it. It’s not worth getting upset about.”
She gets her checks out of the Christmas bag that’s in the blue canvas bag on the couch/bed and searches through the tiny writings that list the checks she has paid. She can’t find the evidence she is looking for.
“Maybe they hadn’t received it at the time they sent the bill. Maybe you’ll get a credit next time.” I hand her my pen, and the check gets written. I give her their 800 Customer Service number, which she puts in tiny figures on a piece of paper she is holding.
I forget just what it was that set her off next. I do remember that she had her face next to mine, yelling at me that she could eat like a pig and put on fifteen pounds but look, nothing would make her fat knees look any better. She is wearing shorts and points to the offense. No use telling her the knees look fat because the legs are so skinny. “I’m trying?” Janeth yells. “Haven’t you noticed? Didn’t I eat a lot of the dinner? Don’t I eat those whatever-they-are that come in the morning?”
I say, let me help clear things up, and I go to her side of the room to get her plate and empty glass. The small milk carton is still half full. ”Are you thirsty?” I ask. “Would you like to finish your milk?” She doesn’t know. She’ll have to think about it. When I put the milk carton back in the door of the refrigerator, I am startled to see approximately twenty bottles of nail polish marching across the top shelf.
Janeth sees my expression and says, “You’re the one who told me nail polish keeps better in the refrigerator. And you can use it when you start getting a run in your nylons.” I ask her when was the last time she put polish on her nails. Years ago, she admits.
“Let’s get rid of them,” I say, as I start dropping them into a plastic bag.
“You’d better be quick about it because the freezer will get full of frost.” I grab a few more of the bottles and close the door.
Now Jan turns her back and lifts up her shirt. “Would you look and see if there are any cancers on my back?”
“No, your back looks fine.”
Next I suggest that we tackle her filing cabinet, one drawer at a time. In the top drawer in back of a pile of papers is a white pocketbook. Jan says it’s a shabby old thing that she keeps one of her wallets in. The wallet is a long black one that I’ve seen before. Okay, we’ll start with that, one section at a time. In the first are Walter’s IDS dating back to his service in WWII. Then more recent cards associated with his government work. An ID for Jan’s stint with the Waves. After half an hour’s discussion about the contents of the wallet, I find only one item she’s willing to part with. I don’t blame her for wanting to save these mementos, but I begin to realize what she means when she says it will take thousands of years to sort all her papers.
“I give up,” I say.
“Really?” she beams, delighted that I can see what she’s up against.
I do make inroads on one small paper bag I had noticed on the couch/bed. It is full of empty phials for her medications. I read off dates that go back two years.
“We can toss those, right?”
Janeth is loath to toss them. “Suppose I’m at a doctor’s and he wants to know what medications I’ve been taking. How could I tell him?”
“Tell him what you are currently taking. Lisinopril and Risperdal. I’ll write them down for you.”
When I am leaving the apartment with the handful of clutter I’ll throw down the chute, Jan makes a statement: “I have eyes. I can see what everyone else sees. I know that this place is a mess.” I drop what I am carrying and put my arms around her frail, bony shoulders. I tell her I love her. She loves me back.
Message left by distraught sister concerning Nell, the visiting nurse, who came this morning but stayed only twenty minutes because the Meal on Wheels arrived. Nell said she’d come back Thursday.
"She's trying to tie up my whole life," Janeth tells me when I call. Then she shifts to another subject. She wants to have her hair looking nice for our second appointment with her lawyer, but can't find the curlers that are the right size.
“They have disappeared into thin air. What could have happened to them?”
I offer to buy more curlers. She says a bit testily that I don't need to keep buying her things.
Then she says, “I've been thinking, isn't it foolish for an old lady to care what she looks like just because the lawyer is handsome?”
“No, it's not foolish at all. I love to see you looking cute the way you do when you're fixed up and your amazing dark hair is shining and natural. How many old ladies do you see who have anything but white or gray hair?”
“I don’t notice how other old ladies look.”
Before we go to the lawyer's office, I decide I have time to tackle the issue of the trampoline and the clutter on its surface.
"But that's how I get my exercise!"
“At eighty-two, that could be dangerous, Jan.”
She steps up on a part of the canvas that isn’t cluttered, says whoops, and manages to steady herself. She then says she's waiting for Ray to put some kind of railing around the trampoline for her to grab if she loses her balance.
As for the extremely heavy suitcase parked on the trampoline, it’s full of papers, she says. Likewise the other sturdy leather carrying case. Nevertheless I accomplish a few things before we leave. I collect the abundance of plastic containers on her trampoline, promising I'll return any she needs in the future. She also allows me to gather up all the small Hoods cartons scattered in the kitchen except for one. She needs that to measure the eight ounces of water she is trying to drink several times a day. Empty yogurt containers are also confiscated, the total rubbish filling the bag I take to the trash room. I leave another bag by her front door for the plastic containers worth saving.
When we are ready to leave, Janeth puts her valuables into her cart. I begin looking everywhere for the paper bag I had just placed by the door.
"You see how things just disappear into thin air?" says Jan. At last I found it in her cart. We were off! Both of us!
Off to see the handsome lawyer, trala. Then Janeth decides to go back for her lipstick, and while she’s at it, asks me to put some brown eye shadow on her eyelids. When we finally reach our destination, the way she flirted with the attorney was shocking.
"I shouldn't have told him to cross his t's," she said. "I was fresh, wasn't I."
“He was enchanted.”
This evening Janeth called with the marvelous news that she is going to the dining room for the dinner I had read aloud when we were in the elevator: Chicken Cordon Bleu, mashed potatoes, broccoli, apple crisp for dessert.
"I was able to make my hair look better, so I decided to go."
"Call me later," I said. I wanted to know right away if the snoops took advantage of her absence again, rather than hear about it two days later. Her report: "I’m pretty sure that things in the filing cabinet were not lined up the way I remembered."
To: Linda Subject: Re: Black Humor*
I've been feeling guilty about the light tone I sometimes take when describing interactions with my sister. There is nothing funny about her plight. As I sought for the words to type in the Subject line, they came to me. Perhaps Black Humor has its place if it is interspersed with sorrow, sympathy, pity. I love Janeth; her life is a daily struggle through no fault of hers. Our beastly father made her what she grew up to be, a fearful, suspicious woman, and what she is now, clinically paranoid. Her voice can be heart-breaking when she has difficulty in expressing what she wants to say . . . a little sobbing intake of breath punctuating her phrases. I'm making myself cry, and probably you, too.
*Black is Janeth's married surname.
There’s nothing to feel guilt about. It’s human nature to use defense mechanisms, and this one is demanded by our survival instinct.
You may remember when I questioned you about my grandfather. I was beginning my work as a mental health provider and going to school . . . coinciding with my genealogy project. It suddenly hit me that I’d never seen a picture of him in my entire life, and considering all Mom’s bizarre behaviors over the years, I thought hmm.
I asked you if there had ever been inappropriate sexual “stuff” going on, and your response was “Oh yes, with both of us!” I tell you, it has really made a difference in my attitude toward her and my childhood experience. This is one of those occasions that I think of as meant to be. IF I had never been recruited to do this work, and IF I hadn’t gone on to school, IF I had never started searching the family roots, nothing would have changed for me. As far as all that “BAD” stuff goes, I’m at peace, and the pattern of anger is not repeated in my childrearing. I’m a democratic parent, giving my children the freedom of their voice and creativity, only guiding them morally, with some financial education thrown in.
So, getting back to what is meant to be. . . fate has put me on this track for a reason. Whew. Yes, I’m crying. . . for multiple reasons. Mom, me, my kids, my whole family, humanity. It also makes me think of Great Aunt Ruth, stepping into a shower her stepson was taking. Your father and she must have been molested as children too. How many generations? At least there is no more of that going on.
Oops! I need to get to work. *K*K*K*
Tomorrow we’re going back to the handsome lawyer because the bank where he advised us to start consolidating her assets gave us (me) a hard time about the way the trust was expressed. Also, the woman wanted to be sure Janeth understood that the Trust gave her no check-writing ability. My sister looked puzzled, and I said, “I think Bella is telling you that you need to trust Linda and me because we could rob you.” Bella said, “That’s exactly what I’m saying to yez.” Which means both of us, I believe.I pick Janeth up at 10:30 and we set out for the attorney’s office. Get there in time for a stop at the Ladies Room, then are ushered into the lawyer's conference room. He has already revised the Janeth Black Trust to include changes that will satisfy the nitpickers at the bank.
Janeth says she is starving. I tell her I’ll treat her to lunch at Barry’s Deli. Knowing my sister’s illness causes difficulty in making choices, I expect her to be buffaloed by the dozens of offerings plastered on the walls. Janeth is a wonder. She thinks the fish chowder sounds good, and so does the homemade beef stew. We order both.
Last stop, Roche Brothers because Jan is out of milk. I get into a motorized cart and head for—where else—the Ladies Room. It is occupied, so Jan says she’ll stand guard outside the Men’s Room. I am lifting the seat up again and about to wash my hands when I hear a shriek, “No, don’t!”
A gentleman is pushing through the door. “Oh, excuse me!” he stammers. As I hasten to exit I say, “No, it’s my fault. Actually it’s my sister’s fault.” I point a finger at her and say, “You’re fired!”
Everybody laughs. Now I have the problem of backing my cart out of the narrow corridor, which has become full of other traffic. The traffic makes way, while I back into a man who is sitting at a table, eating a sandwich and minding his own business. He apologizes profusely, I insist I am to blame, and the counter girl shows me a way to get the hell out of there.
Now we select a couple of bananas and a loaf of bread and a half-gallon of whole milk. I abandon the cart when we’re ready to check out, remembering I got stuck in the aisle the last time we were there. The checkout lad asks my sister if she wants paper or plastic. Jan looks at me in dismay and says, “I don’t know!”
“Make it paper.”
Janeth gets out a check, taking time to make sure it is the right consecutive number, then is told she has to show a license or other ID before they can accept the check. She unzips her tiny white purse and starts looking through various cards tucked in with some change and some folded bills. All she can produce is her Blue-Cross Blue-Shield card. The supervisor accepts it, probably because the line behind us is getting long and impatient.
At last we pull up in front of Janeth’s building and I open the trunk where she has stored her valuables and her purse and a couple of paper bags. I’m hoping she will have room in her cart for all her possessions, old and new, so I won’t have to get out my cart and go up to her apartment with my back begging for a truce. In one of the bags I see aVermont Bread plastic wrapper full of empty Meals-on-Wheels milk cartons and disposable plates.
“Jan, I’ll throw this out for you.”
“No, I have to look through it and see what’s in it.”
I’m worn out, it’s getting late, so I say querulously that I don’t believe this, it’s just trash. Nevertheless, I put it back in the paper bag. After she is finally organized I say, “Janeth, why don’t we look through this stuff now, so I can get rid of it.”
She gives me a fierce look and says it’s full of smelly things. I lose patience. “I don’t care if it smells like shit and pee, let’s throw it away!” Janeth grabs the trash away from me and says angrily, “No! I’ll take care of it later!”
We take the elevator to the eighth floor, Janeth enters her apartment, and I hand her the bags from my cart. By now we are back to normal, whatever that is, and we hug goodbye.
Later, back at my apartment, I am in my study, looking through my e-mails, when the phone rings. It is Janeth, and she is frantic. She can’t find the little white purse that had change in it, and cash, and what is she going to do? Linda is coming tomorrow and she’s going to need change if she plans to do a laundry. The people down there can be so mean, they can be very rude to anyone who isn’t a resident. Sometimes a daughter will be doing laundry for her mother and they’ll tell her she can’t use the machines; she has to be a resident. And besides, what will Linda use for change? You have to have quarters.
I tell her I’ll call Roche Brothers, since that was the last time I saw the purse, and if it hasn't been turned in there, I’ll look in my car. If it isn’t there, I’ll call Linda and tell her to stop and get change.
After the Roche Brothers call I take the stairway that’s nearest to my car. I search the trunk. No little white purse. I open the passenger side door. It’s dark, but what is this patch of white between the seat and the door’s threshold? Can it possibly be. . . my fingers tell me yes, it’s the little white purse.
Now I wish I could run up the stairway instead of groaning up the stairway. As I open the door to the hall, I see that my neighbors have put up some pretty wreaths for Easter. Funny, I didn’t notice them before. I had left my door unlocked, I was sure, but when I twist the knob, it doesn’t give. Moreover, the name on the door isn’t mine. How did I climb to the second floor without the slightest realization that I had gone past the first? I am cautious as I go down the stairway, gripping the banister firmly. A thought that’s been going through my mind lately asserts itself again, “My sister is going to be the death of me.” If this happens, remember, I said it first (Black humor).
Oh, how relieved Janeth is when I call her. I tell her I expect her to use the bills in the purse to treat me to lunch next time.
“Love you, Janeth.”
“Love you, too.” We exchange hugga huggas and my seven-hour assignment for the day has come to its happy conclusion.
Janeth calls to tell me Linda has arrived and is working like a house afire. No, I don’t need to stop and get quarters, Linda seems to be all set. I pull up in front of Southern Artery Apartments and get out of the car, carrying the little white purse. Jan is waiting for me.
“Is Linda up in your apartment?”
“No, she’s in the basement doing laundry. Follow me.”
Linda is standing outside the laundry room with another laundress, this one a white-haired resident. After we have exchanged hugs, the resident asks if Jan is my mother. The question must be a crusher for my sister, but she gives no sign that she is hurt. Maybe she didn’t hear it. Oh, I hope she didn’t hear it. She keeps smiling while Linda and I explain who is mother to whom and who is niece and who is sister.
Regarding the plan for Linda to do a laundry, Janeth has thrown up various roadblocks. People are mean to outsiders. Only two of the machines are ever working. There is a sign, a very menacing sign warning outsiders not to use the machines.
“Where did it go?” she asks worriedly, looking around. She wants me to see it. I find the sign posted inside. It says that it is against the rules for relatives of residents to use the machines for their personal laundry.
“You see, Jan, it’s all right for Linda to be doing your laundry. She isn’t supposed to do her own.”
She has an answer for that. “How do they know it’s my laundry she’s doing?” I joke that they probably don’t have detectives checking what’s in the machines.
“Well, maybe Linda can get away with it today,” says Jan, sticking to her guns, “but on another day. . . “
Back at home, I spend an hour trying to figure out how to fill out the form sent me by Janeth’s Blue Cross Blue Shield. It has something to do with the whopping bill she received (and I haven’t shown her) for the ambulance, when Beatrice insisted she go to the Emergency Room at South Shore Hospital because of her swollen ankles. I’ll call BCBS next week to get help with the form. My filing cabinet for my sister’s papers is a carton on the floor next to my bed. I’ve been thinking of all the boxes of writings, letters, etc. that I have stored in Kathie’s basement. My sister has no such resource and lives in an apartment that is tiny compared to mine. No wonder the paperwork got out of control.
Jan had one of her graphic dreams last night. She said it was so real, she expected to see a twisted sword in her hand when she woke up, a prop for a game she was involved in. At least she recognized this time that it was a dream.Today she again brought up the one in which she thought someone had broken the lock to her balcony door and opened it wide, chilling the room, then grabbed her and tried to smother her. When she first described this event, she said she woke up to a very cold room, went to close the balcony door, "and a hand grabbed my hand." This part of the story convinced me that it was a dream or a hallucination.
I call Jan to ask her about her day. Clearly traumatized, she gasps out her story.
“I have done a terrible thing. I lost the package that Beatrice had so kindly picked up for me at the pharmacy. I had gone down to the office with my rent check and thought I might have left the package there. I tried the office number over and over again and finally someone answered. It was Lois. She looked, said I hadn’t left it there. Instead of killing myself, I got on the phone and began calling every pharmacy I could think of to try to figure out what else might have been in the package besides my calcium prescription. I had the wrong number for CVS, finally got the right number, but they didn’t have a prescription for me on file.
“Ray is coming any minute, bringing calcium pills. He didn’t want to do it. He said, `Remember the last time I got calcium pills for you? You’re so fussy, you said they were the wrong kind and sent me back to the store to get your money back.’ Beatrice was so sweet. After she gave me the package, she put her arms around me and kissed me. How can I face her after this? I can’t call her, the office is closed.”
I sympathize: “Don’t these things always happen on Friday night!”
“You are so calm. That remark is just what I needed. Yes, it does seem as if the worst things happen when you can’t do anything about them.”
Jan calls back and says she found the package in the cabinet under her sink. Had no recollection of putting it there.
It should have been an easy day. I found the place where I was supposed to meet Ted, All State Glass, arriving at the appointed time. He had said he might be late, and I said, no problem, I’ll bring a book. I circle around the parking lot, looking for an office door. Finally, I decide to park and find a place where I can sit and read. I grab my book, push down on the lever that locks the doors. I perch on a concrete slab on one side of the lot and start reading, but it’s cold. I decide to read in the car. I can’t get in. My keys are sitting on the driver’s seat. My Triple A card is in my wallet, my wallet is in my purse, which is in the car.
I find the office. The secretary has just been on the line with Ted, who is on his way. When he arrives, I tell him what I have done.
"Okay, do you still have a set of keys in your desk? We’ll go get them."
I confess that my apartment keys are on the floor of the car. So Ted drives first to his house in North Scituate, where he has a spare set, then to my condo in North Weymouth, where I retrieve my keys. I am thoroughly mortified to be so much trouble, but Ted never utters a word of reproach.
He does give his emphatic opinion on what I should do about his aunt. I should contact Linda, tell her to come down with whatever help she can enlist, and put her mother in a nursing home or whatever. “You shouldn’t be taking Janeth here and there and ruining your health in the process. I’m not angry, I’m just passionate about what I think is the right thing to do.”
I tell him Kathie and I have agreed that Janeth is too sane to be put in a nursing home or whatever. Suppose the same thing happened to him some day and Tim was the only one who could do the care giving? How would he feel if his brother moved him into a nursing home when he wasn’t that ill?
“That would be fine. I wouldn’t want to be a burden to his family. I would go willingly to a nursing home.”
After we pull up in front of All State Glass, Ted goes in to see if they can replace his windshield now. They can’t, so he says, okay, we’ll go to Weymouth Honda. After my blunder wasted an hour and a half of his valuable time, he is still going to help me replace my tired old auto with a new leased car. I am grateful to #1 son.
There’s nothing quite like the prospect of a shiny, unblemished new car to elevate one’s mood. As we are leaving, the black manager who greeted us when we first walked in shakes Ted’s hand and says, “A pleasure to meet you, Brother.” Ted puts his hand on top of his brother’s and echoes the sentiment. Then the chap takes my hand, presses it warmly, and says, “A pleasure to meet you, too, Mother.”
Ted holds the front door open, and I say to him, “I guess I’m really getting old. He didn’t call me sister.” It isn’t easy to make my older son laugh, but he turns around and repeats my comment to the manager, who also laughs heartily.
I call Janeth to see if Beatrice has assured her she could safely put decades-old papers down the chute.“Beatrice said the rubbish ends up in the basement where it’s compacted by a truck.”
“That’s good news. Now you could get rid of papers without worrying about anyone being able to see them.” My sister isn’t buying this.
“It seems people forget what happened in November of 2006,” she says in what appears to be a non-sequitur but is rational in her mind, “when I was assaulted by an intruder on my balcony.”
I say I haven’t forgotten; I remember her telling me about this frightening experience. “You said he was able to get to your balcony by coming up on the elevator.”
“Nobody knows that for sure!” she says. “ The police investigated and they never came up with an answer. There was a tall ladder that almost reached to the 8th floor, but he would have had to be a gymnast to hurl himself onto my balcony. People saw him riding a bicycle and casing my apartment.”
I sense that Janeth is determined not to go to pieces when she wisely concludes that we probably shouldn’t talk about this episode. I apologize for having upset her and leave to meet Ted.
We go to Weymouth Honda to finalize the deal. Since we have to do a lot of waiting around for red tape procedures, we converse. I tell him of Janeth's fear about putting things like outdated bank statements in the trash chute.
"She's absolutely right. Identity theft happens all the time. I used to have my own shredder for such papers, but eventually there were too many to cope with. Now I save them in boxes destined for a professional shredder."
I realize I shouldn’t be so quick to assume my sister’s anxieties are always nothing but paranoia.
Jan is convinced her paper situation is hopeless. When I suggested Ted could take bags of papers to be shredded at Staples, she said she didn't trust the Staples people. A shredder truck comes to her building, but it would be too public, and she believes this man, too, could get at her Social Security ID.Kathie comes up with the quaint, old-fashioned idea of burning the papers in her fireplace. I call Jan, hoping she can see how beautifully simple this solution is. But of course she worries. She hopes neighboring houses won't catch fire. She remembers having the idea over 30 years ago of burning papers in a basement furnace, but then she realized she'd have to shovel the ashes "and I didn't hanker to do that."
When Janeth calls this morning, she says, “I'm losing my mind, bit by bit.”
That’s the saddest thing about all this: she knows she has Alzheimers. I saw literature on the subject in her apartment. Another sad thing: she did hear the woman ask if I was her daughter.
"I didn't mind. I know you look younger."
“If anyone ever says that again, I’ll whip off my wig and they'll see what a bald old hag I really am.”
She says emphatically that I am not to remove my wig, ever. “It’s part of your appearance, like anything else a woman wears.”
What could be more sweetly rational than that?
I'm still trying to persuade her to give up the big suitcase full of papers and another large satchel, also stuffed, so the contents can go to Kathie’s house for burning.
"The weather is going to be hot, how can they stand using the fireplace?"
“Kathie said they had the heat on every day this spring, and would welcome a little more from the fireplace.”
I received my first Peapod order today, a huge fifty dollars worth. I should have listened to Kathie’s advice a long time ago. All those heavy groceries, cartons of milk, bottles of apple juice and Schweppes tonic will no longer have to be hefted from the grocery cart into my car, from car to my own cart, and with a final groan, from cart to kitchen counter. No more getting irked by the man who sits obliviously in the one available Stop & Shop motorized cart, scratching his lottery tickets.
“I don’t care what he’s scratching,” says Tim. “You should have asked him to move so you could have the cart.”
“There are so many papers to be burned,” Janeth says, “Kathie’s house and the houses next door will catch on fire.”
“She will burn them gradually. It might take a long time, but she and Frank will be able to do it.”
I tell Jan it will be Mother’s Day weekend when Linda comes for her next visit.“Kathie and Frank are taking us out for a celebration on Saturday. First Linda will come and help you clean, and organize; then we’ll drive to Westwood or meet at a restaurant. We’ll work out the details later.”
Jan’s face is as sober as if I were describing a wake we were going to attend. I want to reach out and turn up the corners of her mouth.
When I remark, "Your nephews might be able to help Linda," she cries, "My nephews? My nephews?" She says this three times, while I try to interpret her tone. Has she forgotten Ted and Tim or has she forgotten what a nephew is? I explain that I’m referring to my sons, and she says, "Oh no! They can't come in here! It's too messy!"
This morning I called Janeth from Shaw's parking lot to ask if she wanted anything besides Teddie's unhomogenized, no trans-fat, no-salt, no-sugar peanut butter. She didn't, but she had a few things to say about her neurologist. Ray took her to the appointment.
“When the doctor gripped my leg during his exam, I screamed in pain. He said screaming that loud was part of my illness. I wished he could have felt what I felt. The pain was worse than childbirth or any other pain I'd ever had. Plus, I’m sure he had dirty fingernails and he’s given me an infection.”
“I don't know what we can do about that.”
"I could kill him," says Jan.
"And then what?"
"I'd bury him.”
Jan is ambivalent about the idea of moving to assisted living. On the one hand, she concedes that her anxiety about the snoops may be dispelled when she's living at Advantage House. On the other, she still clings to her world of papers. Yesterday she gave me a couple of letters she had found, one from me to her in 1979, the other from Darrell McClure to me. She had written on the envelope "A family treasure—Please keep forever." I have copies of all such letters in Kathie's basement. I know Jan is trying to show me what might be lost when we cart off piles of papers to be burned.
This morning she has a new dilemma. “My hair is greasy, but washing it is a difficult chore, and I really don’t want to do it.”
“When you go to your appointments next Friday with Ray, one of them is for an EEG and you need to have clean, dry hair for the test.”
She says indignantly: “I didn’t know I was going to be dictated to like that!”
“Well, you’d want to have it looking nice for Ray, anyway.”
More indignation. “For Ray? The only person I’d ever do it for is you!”
She continues to complain bitterly about being required to wash her hair. I have read that Alzheimers patients sometimes refuse to take baths or showers, and perhaps this is the stage my sister is reaching. It will be a relief for both of us when she is safely at Advantage House in the care of experienced professionals who will know much better than I what to say and do.
I’m sitting with my head bowed in front of the computer keys. I’m not praying, I’m trying to remember everything that happened during the hours spent with my sister. If I can record them, I’ll be free to stop thinking about them.
I call Jan to tell her I’ll be picking her up in twenty minutes.
“Where are we going?”
To pay a visit to Advantage House, I remind her, so she can look at an apartment.
Her voice immediately turns frantic. “But I’m not wearing the right clothes! I’ve got on those pink slacks I’ve been sleeping in. . . .("I love those. You look darling in those.") . . . “they’re dirty, and my hair is greasy. It will take too long for me to get ready.”
“Take your time; we don’t have to be there until noon. I’ll read my book until you come down to the car.”
She emerges from her building at 11:30 with a clutch of papers and a plastic-wrapped muffin from Meals on Wheels.
“When you look at the ingredients in the fine print, you find substances that are in gasoline or chemicals that repair engines, things that make a car roll or an airplane fly.” She wants me to read the list of toxic ingredients, but I say we have to get going; I’ll look later.
I find a parking space near the entrance of Advantage House. As we enter, Janeth turns to me and speaks anxiously about the cost of living in a place like this.
“Jan, you have scrimped and saved for years, and now it’s time to start spending your nest egg. On you. You deserve it.” She is looking at me dubiously when Connie, the Advantage House manager, appears.
Introductions are made and Janeth departs with her guide. I can’t read my book because I am praying to God or the Goddess or Whomever that my sister will like Advantage House and its amenities. An old gentleman with a walker maneuvers himself into a nearby chair, takes his newspaper from under his arm and begins reading it. I try Positive Thinking, my mother’s standby.
Jan returns, with Connie. I look at her expectantly. “Well. . .? What do you think?”
She cocks her head. Wow. Not Wow-terrific but Wow-it’s-awfully big.
She seems dazed by the prospect of such a radical change. “I don’t know what I’d do with all that space.”
Connie thinks a minute, then says she can show Janeth the studio apartment of a resident who’s away and won’t mind. The verdict? My sister likes the way the resident has furnished her apartment, but the refrigerator is tiny.
“They’re needed only for snacks,” Connie says. All your meals are provided.”
Although I hoped that Jan’s move to assisted living would mean she’d enjoy having meals served to her in the dining room, I wasn’t surprised when she said to me later, “I don’t think there’s going to be anything on the menus that 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 said 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 don’t blame Peter Pan’s Peanut Butter for the problem.
When we return from our excursion, I ask Jan to show me the infection on her leg. She rolls up the pink slacks.
“When I showed Ray what the doctor had done to me, he kept telling me to stop rubbing the spots so hard, but how else could I find where they hurt?” I see faint pink marks and say that it looks as if they must have healed.
”Oh no, the infection is underneath.”
She tells me she has been working on memorizing Ray’s address. I ask if it’s in her address book.
“I don’t have an address book. It would be an invitation to the snoops to find out more about my business and everyone else’s business. . . .”