Keeper: One House, Three Generations, and a Journey Into Alzheimer's (19 page)

Chapter 21

Between the acting of a dreadful thing
And the first motion, all the interim is
Like a phantasma or a hideous dream
.

—W
ILLIAM
S
HAKESPEARE

I
FIND, ON A ROUTINE SELF-AUDIT, THAT
I
HAVE BECOME
very low. Nancy is succeeding in sucking the optimism out of me, a strange new place to find myself in the middle of summer: flat in the heart, empty in the head, craving solitude and sleep. Peninsula sunshine is blinding, uninterrupted by geography, reflected and magnified by the sea, but I am peculiarly unmoved by the sun at the edges of the curtains in the morning. It’s worse, in a way, when the weather is good. On top of my own lowness is overlaid recrimination. Here it is, a summer day at last, and I don’t want to have anything to do with it. Worse, I don’t seem to be
able
to have anything to do with it. I can’t step into it and be warmed. The heat on my skin is an irritant, the warmth on my head provoking. It’s best if I keep my distance.

What I want is a sofa to myself. I want to be left alone to read, reassured by the sun pouring in at the windows, which is a novelty in itself, but Nancy’s reaction to the arrival of something like summer is an inability to sit still. Daily she wanders the hall. Up and down to the conservatory and back. Through one kitchen door and out the other, twenty, thirty times a day. Up and down from bedroom to sitting room. In and out of the bathroom with an absent expression, her mouth drooping, her eyes blank and hooded. She’s taken on what’s called the
lion face
of Alzheimer’s. But if sunshine makes her twitchy, it’s worse, far worse, on the bad weather days that follow, which come as we know they will, a wind and rain corrective. Seasons arrive and depart in self-contained daily chapters that seem to have little to do with one another or with the conventions of the calendar.

“Hey, you. Hey. What you doing?” I say cheerily. “Wandering again? Can’t we find something for you to do?”

The voice of doom speaks in monotone. “There is nothing to do. There is nothing at all to do. It’s just all meaningless. It happens again and again and it doesn’t mean anything.” She goes to the window, gestures out at the bay, the headland, the sea roaring and the wind howling in another midsummer gale. “Look. There’s nothing there.”

She’s right, I find myself thinking. We must get back to the city! Though it’s my mother-in-law’s thought, this Edinburgh-craving thought I’m having. I’m channeling my mother-in-law. She has possessed me and I am diminished.

After the gales recede there are days of gray mugginess, the midges gathering in clouds on the road beside the wood. Then there’s a cold snap, which coincides with the B and B booking of two women from New Mexico engaged on a European tour. They live in perpetual drought at home with a cactus garden, and though they say that they expected Scotland to be cool, their idea of cool is 68 degrees, a temperature regarded as sweltering hereabouts. The house isn’t warm enough for them, even with all of our inadequate heaters blasting on max. They huddle by their coal fire in three layers of thermal and fleece. One of them wears a bobble hat for breakfast. They go out on a cool June morning wearing all the sweaters and coats and earmuffs and scarves and gloves they could find in an emergency dash to the knitwear shop in town. Nancy meets them in the conservatory and makes a fuss of their itchy Fair Isle acquisitions. “Oh, that’s just brilliant!” I hear her exclaim. “Where on earth did you get it? Because I want one just the same! Can I try it? Can I? Can I if I’m extra nice?”

Written feedback arrives from Nancy’s April respite week. It seems that she was a happy bunny at the residential home. “She taught some of the other residents to dance.” She “only became distressed when the time came for her to leave.” Next, feedback arrives from the care manager, verbally over tea and biscuits. There’s bad news from the bed allocation committee. Our attempt to get Nancy onto the list bounced back with little consideration. “More help could be offered at home.” Seven words. Nancy’s not anywhere near eligible even for the waiting list yet. Meanwhile, following more day center shenanigans, and spurred on by this bounce back, one of our doctors writes a letter saying that in her opinion Nancy has already reached the point of requiring twenty-four-hour medical care. This cuts no ice whatever.

It’s getting more difficult to persuade Nancy to take her clothes off at bedtime. Underwear is a particular bone of contention. She’s physically as strong as ever and holds on tight to her underpants with both hands as they descend.

“Come on, you know you don’t wear underpants in bed,” I say.

“I’ve never heard anything so ridiculous in my life,” she thunders, Miss Jean Brodie to a T.

S
HE BEGINS A
concerted series of kitchen raids. She seems to be hungry all the time. This is explained when I go back into the in-laws’ sitting room one morning and find Morris eating Nancy’s cereal. He has a rabbit-stunned-by-headlights look when he sees me coming.

“Morris, you really shouldn’t eat Nancy’s breakfast,” I tell him. “I can get you another bowl if you’re hungry.”

“It’s not that. It’s just that she won’t eat it and she’s anxious about it, so I’m helping her out.”

“The thing is, we need to know how much she’s eating.”

“Okay, boss, I hear you.”

“It’s important that she eats properly. I can find her something else to eat if she doesn’t want Weetabix.”

“You’re the boss.”

He’s also helpful when she decides that she isn’t going to take her pills any longer. More than once, I approach their door and hear Morris saying, “Quick, she’s coming, give them to me.” I find them cupped in his palm, the five little pills that Nancy doesn’t want to take.

What does he think, that this helps Nancy? What does he think, that I’m the nasty matron who will insist on cod liver oil, and ought to be outwitted? That’s how it seems. His attitude produces a twin. Mine. Cast in the role of nagger.

“You have to be in charge of Nancy eating enough, and Nancy getting her medication,” I tell him.

“Uh-huh,” he says, not taking his eyes off the television.

“Morris! This is serious stuff. This is important.”

“All right, all right! I hear you!” he snaps.

When I leave the room, they mutter together. The word
she
begins to be heard a lot. I am she. She is me. The nasty matron.

N
ANCY’S DIET BECOMES
difficult to manage. She is rejecting most of the things I present her with. Morris gets given them when I leave the room. Her breakfast cereal, her toast. Her lunch. She’ll eat the potato chips and the yogurt but not the sandwich. Morris gets first dibs on that, and if he declines, it’s offered to a passing dog, and if the dog turns his nose up, it goes into the fire. I find the evidence in the grate among the cinders—a jumble of foodstuffs, tipped and scraped. Sandwiches, grapes, baked potato, small heaps of rejected salad. I fill up the biscuit barrel on Morris’s side table every day, and every day it empties again. Every day, hungry, Nancy comes into the kitchen when I’m not there and carries out a snack raid. Things begin disappearing that nobody can account for. Packets of biscuits, packets of nuts, half-pound bricks of cheese, a bowl of strawberries, tomatoes brought in from the greenhouse and left in the colander. Things put out on the worktop ready to cook suffer random losses. An aubergine with give-away bite marks appears in the wastepaper basket. I come into the kitchen one afternoon and find Nancy standing in front of the stove, stuffing buns into her mouth. They’d been left out to cool on a rack ready for the children coming home. She has one in each hand and her mouth is full, working hard at another. There are four others missing from the tray. I’d been gone from the kitchen for ten minutes, gone to bring washing in. I’m beginning to understand what lies behind her constant opening of the kitchen door, and her retreat when she sees I am in there.

“Oh. Oh, there is somebody. Well, it doesn’t matter. I’ll come back.”

“Something you want, Nancy?”

“No, no. Just wondering if there was anybody here.”

“I’m here. Just reading the paper.”

“Yes, yes. Well, then. I’ll come back.”

“Sure I can’t get you anything?”

“No, no. It’s fine.”

Occasionally she’s caught red-handed. She’s defiant about the buns.

“Oh, Nancy—no. They were for later.”

Nancy (through a mouthful of cake, spitting liberal crumbs): “What’s it got to do with you?”

“I made them. For later.”

“Well, then. Well, then. Enough of your nonsense.”

She reaches for another.

“Nancy. Leave the buns just now. Go and see Morris. Here, take some peanuts with you. How about some cheese and crackers?”

Nancy ignores these offers. Her beady eye is fixed birdlike on the cakes.

“Leave the buns till later, Nancy.”

“I will not. They’re just as much mine as yours.”

“Actually, no, because I made them.”

“Oh. Oh, sorry.”

But when she leaves the kitchen she takes one with her.

She picks things up and inspects them even if she doesn’t eat them, which is worse in a way. Bathroom hygiene has been abandoned, so nobody else in the family wants to risk eating food that Nancy has touched. The fruit bowl becomes unpopular. Jack will only eat bananas and oranges, things that have to be peeled.

There are several alarming toilet incidents. The kind that make a person gag when called upon to deal with them. By “a person” I mean me. Chris is made of stronger stuff and this is chastening. I didn’t have any problem dealing with the children’s bottoms when they were little, after all. I try to think of Nancy as a big stroppy baby—one shouting, “I didn’t do it! I didn’t do anything! It’s nothing to do with me!” But it doesn’t help. One morning we come down to find—and I’m sorry to be so graphic, but this account is only of any use if it’s honest—what can only be described as a trail, leading from the day bathroom out into the hall. The beige-colored carpet is smeared. Turds have been deposited at intervals and then trodden in. Opening the bathroom door, the floor is awash. Chris steps in and rolls up his sleeves and deals with it. I offer to go and have a look at the perpetrator. She’s fast asleep. The feet are easily sorted out, courtesy of a series of wet wipes and a supermarket bag, breath held and eyes averted. The carpet will never be the same.

It’s not a good month for bottom issues. Morris has been given a toilet aid, a mobile lightweight frame with a higher seat. One day when I’m cleaning, I move it away from the toilet in the day bathroom and forget to put it back again. Nancy, not able to understand the significance of its being moved, goes in and sits on the frame rather than the toilet, and pees gallons on the carpet. She’s getting enough to drink. That’s obvious. The kitchen door is often open in the morning and I suspect she’s sleep-snacking. Sleep-snacking and filing her nails. Having refused tea, coffee, juice, squash, or water all day, she’s possibly waking thirsty and going to the kitchen tap. But how? She can’t any longer manage a tap. Nor find a glass in the crockery cupboard. Nor find the cupboard, come to that. Not when she’s awake, at any rate.

The worst day with Nancy, the worst ever, comes unexpectedly as disasters tend to. One morning, when everybody is out of the house except Nancy and me—Morris has gone to the day hospital, the children are at school, and Chris is away—she summons me to her bedside with shouts. I can’t be sure of this, but it might be
“Service!”
that she’s shouting. When I open the door to her room, she’s red faced, her eyes blazing. It’s 9:00
A.M.
and twenty minutes ago she was snoring. The twenty minutes have been spent profitably. She’s lying in bed wearing miscellaneous layers of clothes: a shirt and a pair of trousers next to her skin, followed by a bra (backward, clips across the bosom, cups flapping behind) and another pair of trousers, then underpants, then a cardigan worn round her waist like a skirt, another two cardigans worn properly, her bathrobe on top.

“Where have you been? What time do you call this, then? About bloody time, too,” she says to me.

It takes almost an hour to get her undressed and showered and redressed—she’s soiled and peed herself in bed—by which time she is in pugnacious form.

“Is that all you’ve got for me? It’s not very much, is it?” she says when I light the fire. “Is that all you can do?” when I put her television on. I ask if she’d like a cup of tea.

“Not likely, not if you’ve anything to do with it,” she says. “Get me somebody else. Go on! Go on! Fetch me the manager because I want to complain.”

“Look,” I say. “I do not work here. For your information. I live here. This is my house. You are my mother-in-law and that’s the only reason that I put up with you.”

She looks taken aback.

“Well,” she says with great theatricality, “I’ve never been so insulted—”

“Really? It’s early yet,” I shout, leaving the room and slamming the door.

I sit at the table, heart thumping. What am I doing? Why am I so angry? My hands are shaking.

I get up and open the door. Smiling like a maniac.

“Nancy! How lovely to see you!” I trill. Ordinarily, this tactic would work. Short-term memory loss can work to a caregiver’s advantage. But Nancy isn’t going to be bought off anything like that easily. This is a seriously bad day, heroic in the pantheon of Bad Days with Nancy. Ordinarily an immediate about-turn of mood on my part has an almost magical effect. Ordinarily she would grin at me and greet me back. “I’ve not seen you for so long! My friend! Come and see me, come and sit by me.” Patting her lap as if I were six. This would be a normal about-turn and all would be well. But today is different.

“I’ll just get your breakfast, back in a tick,” I say.

I take her a bowl of two Weetabix with milk and sugar and a piece of jammy toast for her tray, a glass of orange juice and cup of tea for her side table. She stares forward, rubbing her hands together. She takes her pills without comment, without resistance, still staring ahead and rubbing. I stand in front of her for a moment. She doesn’t seem to see me. I crouch down. “Nancy,” I say. “Here’s your cereal.” She is rubbing more urgently now and her eyes are wide. I put the spoon in and offer a little to her lips. I offer up the toast. She takes no notice.