The Slippery Slope...Caring for the very old, Part Two
by Julia Sneden
My 94-year-old mother lives in a nursing home. She hates it, but her multiple disabilities make it necessary. She frets that there won't be anything left for my brother and me to inherit, and she's probably right. Fortunately, he and I aren't the fretting kind.
My friend Angela's father has just moved in with her. Until a few weeks ago, he lived in an apartment, determinedly alone. Through Senior Services, he had a twice-a-week housekeeper, a visit from a home healthcare nurse, and Meals On Wheels, about which he grumps: "Gourmet cooking, it's not." After a series of falls from which he could not get up, Angela convinced him to move into the room her son vacated when he graduated from college and left the state.
Angela and I have a long history of sharing tales of our elderly parents. We have laughed together, cried together, shared information, and worried together. We also help each other immeasurably, as each of us tries to cope with the business of parenting a parent who is not always a willing subject.
Her father's problems with balance won't be getting any better, as they come from an inherited neurological disease. She reports that he is angry over the loss of his smooth gait, and complains: "I have to shuffle, like some old guy with a load in his pants." She managed not to point out that he is indeed an old guy, load or no load.
He is still driving, and Angela is trying to figure out how to convince him to give it up.
I'm the wrong person to ask for advice. Mother simply ignored my hints, rationales, and ultimately my demands that she give up her car. I once discovered that she was driving a friend to an evening concert despite the fact that her license had been restricted to driving during daylight hours only. I remonstrated strongly. "Oh, it's all right," she said blithely. "I only drive around town where I know the streets."
Ultimately the problem was solved by the sad fact that Mother had a stroke that destroyed most of her right visual field (both eyes), leaving her legally blind and unable to read. But even now, from time to time she says wistfully: "I bet I could still drive a car...."
Both our parents amaze us by the creative intelligence that they turn to the problems of being very old.
Angela's dad lives in a blizzard of Post-It notes to cope with his short-term memory loss. He has mastered the Internet in order to keep up with his grandchildren, but must keep a list right next to his computer to remind him of the steps necessary to turn it on or off.
Mother has developed a number of adaptive measures to cope with her limitations, everything from lying on her back, feet in the air, to put on her panty hose, to a careful, one-two-three method of transferring from wheelchair to the front seat of my car. Because she has trouble remembering the current day of the week and the date, she rips off the upper left corner of the newspaper, where there's a weather symbol and the name of the day in big letters (that she can barely make out), and puts it in her shirt pocket. The only problem with that is that sometimes she wears a shirt two days in a row. The other day, she fished up her newspaper corner, and said: "It's Monday. No, wait, here's another one; it's Tuesday." And then, with an imp's grin: "My, how time flies!"
Short-term memory loss makes life incredibly difficult, both for the person who has it, and for the caregiver. My mother, for instance, can never remember where she has put something. Each time she "loses" an object, we spend lots of time trying to figure out what possible new hiding place she has created. "Let's see," she says, "where would I put that if I were me?" and we both laugh.
She also can never recall what time or day a future event is supposed to happen, and her limited vision makes leaving notes or marks on the calendar useless. I often arrange to take her some place and arrive to find that she is not dressed for it, or is off at the beauty shop or in exercise class. I drill her on what's coming next, each day when I leave her, but most of the time she has lost the agenda within an hour or two, and telephones to ask me what it is she's supposed to know. The fact that she has trouble processing what she can hear over the phone causes immense frustration for both of us.
She has lived exactly half her life in North Carolina, and the other half in her native California. True to what the books on geriatrics tell us, her long-term memory is excellent, and she vividly recalls friends, places, and events from that first half. The last 47 years are all but obliterated, and that's too bad, because they were very happy ones. When we drive, she will see some place that reminds her of an earlier time, and say: "That's where Father and I climbed the rocks" even though her father never set foot in this part of the country. Everything seems to relate to her California childhood.
Angela's father goes two days a week to the Senior Center in our town, which gives her a bit of worry-free time. What she'd really like, however, is a weekend off, so that she could spend time alone with her husband.
There are many things you can't do for the truly elderly. You can't give them back their lost physical capacities. You can't remove the ache of losing their independence. You can't replace their lost beloveds. I remember that when my stepfather died, my mother said sadly: "The salt has gone out of the stew." That was nearly twenty years ago, and she didn't stop living an active, involved life, but neither has she enjoyed it as much.
There are, however, a few important things you can do to make their lives more pleasant. Chief among those is simply listening. That can be hard when you hear the same stories over and over - but in large measure, when we get old, we are our stories, and we need to share them with those around us. Being a listener can also be difficult when you become the much-needed vent for angry feelings that often take the form of tall tales. Being sympathetic while remaining non-judgmental is a difficult balancing act.
There are also many little things you can do to boost spirits, simple things that make a big difference. Helping the very elderly to feel useful is one of them. Whenever possible, both Angela and I find things that our parents can do to help us. When there's a family dinner, my mother snaps the beans. During holiday times, she and I make cookies to give to others in the nursing home. Although she can't see very well, she can still use a cookie cutter, or a spatula to take them off the sheet or spread frosting. Sometimes she helps me polish silver, and although I have to sneak a piece or two aside and go over the streaks she missed, it's a favored chore, especially since many of the items came from her home.
Angela's father has a thing about clean eyeglasses, and every morning he insists on washing hers for her. She often asks him to read the paper to her as she irons, and folding laundry is a chore he enjoys, especially matching and rolling up the clean socks.
I do my mother's laundry, because the nursing home has lost several items and washed a few others in water so hot they ruined the clothes. Also, they don't iron, and my mother likes a well-ironed shirt.
I provide plain yogurt for her morning cereal because she prefers it to milk ("I don't like soggy cereal!"), and the nursing home serves only flavored and sweetened yogurt. It's a small thing, but it matters a lot to her.
I take Mother out every day for an hour or two. Sometimes we drive into the country or up into the mountains. Sometimes we walk a wheelchair-friendly trail that meanders in the woods near an historic park. Sometimes we go to the mall, just to walk around and feel that we're in the midst of life. Sometimes we come back to my house and sit outside on the deck, or in the winter, by the fire. Sometimes we stop by the coffee house for a pot of tea. Sometimes we walk in a nearby formal garden. One of her favorite jaunts is a visit to our local "Fresh Market," where I shop for spices and coffee. Mother refers to that as "going on a snifnik."
When we exit the nursing home, Mother greets my little car as if it were a person: "Hello, baby! What's up for today?" she asks. She also says: "I'm a child of the automotive age. When the wheels are going around under me, I feel normal again." (Her father bought his first car, a Reo, in 1907, the year she was born. The neighbors looked askance when her parents took her riding: "You're not taking that baby in that, that...machine!").
Angela drives her father to the podiatrist. I cut my mother's fingernails. We both administer small comforts like moisturizing eye drops twice a day, and lip balm morning and evening. Thanks to her, I've found a really good lotion to use on Mother's dry, dry skin.
From time to time, I haul out Mother's old photo albums, and we look at them together. She never bothered to write the names of the people in the pictures, so I'm taking notes and labeling them as we go, and she's enjoying the memories.
Angela and I shop for clothes for our parents rather frequently, because they are shrinking and changing shape at an alarming rate. I do a lot of sewing for Mother. Simple shortening of skirts and pants is the least of it: waists must be let out, and shoulders tucked and sleeves shortened. I'd let the store do it, but she cannot stand long enough for a true fitting. Much of what I do is guesswork, but it seems to look all right. Her arthritis makes buttoning her shirts difficult, so I remove the buttons, sew them back on top of the buttonhole, and sew large snaps underneath.
Every six weeks, I go to the nursing home for Mother's "Care Plan Meeting." The people who work with her are dedicated, earnest, and caring, but they have so many patients that they can't always understand individual needs. They are concerned that she is "isolated" because she hasn't made friends and often rejects the group activities. I try to explain that inasmuch as she can't see, can't hear, can't walk, can't read, and in fact can't communicate in any way except to talk non-stop, it's no wonder that she has no friends. As for the activities, Bingo or hymn singing or spelling bees don't hold much appeal for a former English professor whose idea of a good time is discussing Virginia Woolf and Edna St. Vincent Millay. She's still an intellectual, even though her intellect has begun to erode.
Angela is also worried that her father is isolated from contact with people other than family. He doesn't like shopping or eating out. He does see a young neighbor who stops by to visit with him from time to time. Back when he was in the apartment, he made a great show of shutting the door on the Meals On Wheels lady as soon as she delivered his food. "She's just doing what she's supposed to do, which is to check on you and provide you with a little friendly conversation," Angela told him.
"Huh," he replied. "She's just looking to catch herself a husband. Not interested, thanks."
On rainy days Mother and I play Scrabble. I have to read aloud to her the letters on her tiles. I have to place them on the board for her. She still beats me more than half the time, although in a way, I beat myself, since I'm the one who must find a way to connect her inspired words to the board.
Angela and I are both embarrassed when people give us praise for taking care of our parents. "I love him," she says simply. "And besides, it's just there to do."
One of her fellow patients said wistfully to me: "Your mother is so lucky to have you." I smiled and said something light like "I guess we're pretty lucky to have each other." What I felt like saying was that considering the number of disabilities Mother suffers, she's certainly earned a little luck.
Mother is one of the ones who must climb down the last cliff of her journey inch by cautious inch. There aren't many ways that I can help her as she struggles down it, but I do what I can. She did it for her mother, who did it for her mother. I hope that my children will never be called upon to do it for me, but if they are, I will accept their help without apology. My friend who is an anthropologist calls this a transactional relationship: you took care of your children when they were small; they take care of you when you are old. It's not that my mother is lucky—it's that people whose children don't understand this are unlucky.
It is, in the most profound sense, what human life is all about.
Caring for the very old, Part One
Other articles by Julia Sneden on the subject of the elderly and caregiving::
