Sunday, November 18, 2018
I have never been much good at waiting, but when it is necessary, I prefer to wait for good things—Christmas, tooth fairy, the arrival of spring. Being a person of privilege and a hope lady too, I find I’ve had little experience figuring out what you can do while you wait for bad things to happen. The experience I have comes from way back. There was this one time, the Saturday morning of the May long weekend, back in 1973. David and I set out for a drive on the highway in his mother’s white Mustang. The sunny sparkling day was perfect. I was still a teen-ager then with my boyfriend by my side. The weekend stretched before us with the promise of my mother’s cooking waiting for our arrival. Nothing could go wrong. But then something did. David saw that the car ahead of us had come to a complete stop. “Hold on,’ he cried, taking the car out of gear and slamming on the brakes. We skidded, and we skidded, and then we stopped, just short of the car in front. We had cheated disaster. It was a tremendous relief. But then it wasn’t. From behind us came the squeal of brakes and a growing vision of blue that filled the rear view mirror. From inside David’s mother’s mustang came a mind-numbing realization. Without warning we had been plunged into limbo. We were in great danger, and there wasn’t a thing we could do about it except wait for as long as it would take for a bad thing to happen. Reason tells me that we only waited a few seconds to be catapulted from behind into the back of the stationary car in front. Memory tells me otherwise. How many years did I age while we sat there filling our heads with that terrible screeching? Was it an hour, a day, a lifetime? And what did I do while I waited? Did I utter words of undying love to David? Did I write a book, compose a song, plan my career, strike a bargain with God? Memory tells me I did none of these things. I simply waited, and waited, and waited, feeling powerless. In that circumstance, there was nothing else that could have been done. These days I find myself here at Laurier House with David, healthy and able, loved and fed. It wouldn’t be bad at all were it not for the fact that together we are once again waiting indefinitely for a bad thing to happen. This time the waiting is much longer. The very length of it gets to me. With more time to spend, it becomes more difficult to sink into the comforting anesthesia of powerlessness. “Do something!” says a nagging voice from deep within. “Do whatever it is that you can do.” Some mornings when I rise, sleepy-eyed, contemplating the stretching of the endless day, I stand by David’s bed, dripping thickened water into his mouth, trying to conjure a picture of the woman I hope to be. She’s my hero and I am hoping that having the picture will help me be more like her. The woman I hope to be is serene. She has long ago accepted the inevitability of her husband’s death and the unstoppable decline towards it. She does not strain to control that which is beyond her control. The woman I hope to be is vigilant. She reads the latest research. She studies her situation and notices improvements need to be made. She keeps records and asks questions. The woman I hope to be is gracious. She is not the sort who, losing her temper, would snap at an irritating inexperienced care-giver: “Would you just be quiet so we can hear what David is trying to tell us!” The woman I hope to be is creative. She has the smarts to figure out how to get things done. Just suppose he wants to watch The Good Wife on Netflix. Suppose his hands are too rigid to operate the remote. If blindness renders her unable to read the screen, and his speech is so slurred that she can’t tell whether he is telling her to press Up, Down or Okay. She will find some way around that. The woman I hope to be has a sense of humour. Once she has figured a way of getting The Good Wife on the screen, she will linger with him, listening to the voices of those cut-throat glamorous women, wondering which of them she would need to copy in order to be a good wife. The woman I hope to be sleeps more peacefully, exercises more vigorously, plays more music, eats more healthily, laughs more heartily appreciates more gratefully, gives more generously. She reads better books, phones lonely people, delights in the antics of her grandchildren and listens patiently to the troubles of others. She writes and writes and writes until finally she gets something that can be published on her blog. Doing all of this leaves her barely enough time to contemplate the difficulties involved in waiting for a bad thing to happen. The woman I hope to be occasionally shows up to help me out. When she’s here, I do better.
Saturday, October 27, 2018
We had a pig named Nellie on the farm where, in my childhood, I spent many happy outdoor days. Nellie’s sole purpose in life, from the human perspective, was to produce litters of piglets who could later be repurposed as bacon and pork chops. Nellie’s purpose as a living thing, however, appeared to lie in the art of wallowing. Nellie took the art of wallowing very seriously. If you spilled a trickle of water while filling her trough, if it rained, Nellie would indulge herself in a magnificent wallow. She would dig in her snout, twist her body and roll in the mud, cavorting side to side, grunting a dirty song of ecstasy. My father said she was cooling her skin. Even on cool days, Nellie apparently had hot skin. Wallowing, when pigs do it, is likely a much-admired activity, admired by other pigs. In humans, wallowing is also an art form, though not so much admired by fellow humans. Rarely do we speak of wallowing in joy, or achievement. Humans are said to wallow in self-pity or sadness. The implication is that the wallowing is self-indulgent and should cease as soon as possible, possibly before ever beginning. I have, for most of my life ascribed to this view. I’ve never been one to support wallowing in the sad, self-indulgent sense, so it surprises me to see how much of it I do here at Laurier House. Perhaps I have too much time on my hands, or maybe there isn’t any way to be mostly happy when your primary occupation is the care of a beloved person who is steadily losing every ability except the ability to be aware. I used to think that sadness could be fenced in, contained to a finite period of time and eventually wiped out by generous doses of happiness. I had, in fact, been quite successful in subduing it. My first experience with taking charge of sadness came just before the dawn of my teenhood when I left the farm to attend the Jericho Hill School for the Blind in Vancouver. Shortly after my arrival there, homesickness seized me and shook me by the neck for weeks. Every now and then I would raise my head and notice that other kids seemed to like it fine there. They were laughing at jokes, playing records and gossiping about each other. Having noticed their happiness, I would retreat to my pillow and cry for an hour or so. This went on through September until finally, chapped and exhausted, I set myself a crying schedule in which I planned to cry for a shorter period each day until I would eventually reach a dry-eyed day. With less time allotted for crying, my naturally gregarious and fun-loving self was able to take over. Similar applications of self-discipline prevented prolonged periods of wallowing during stormy days of teenhood, young adulthood, and the onset of middle age. Thus, when I moved with David into Laurier House at the age of 63, I presumed that feelings of sadness and self-pity would be dispatched once I had my bearings. Getting my bearings as a healthy nursing home dweller has been disappointingly complicated. The most positive thing I can say about dealing with sad feelings after nineteen months of living here is that I am learning to live with them, to accommodate their erratic behavior the way I learned to accept the quirks of the various roommates who shared my spaces back in boarding school days. This is a compromise made necessary by the fact that these rogue emotions have resisted my determined efforts to relegate them to obscurity. I have consulted a counsellor and a doctor; affirmed my main purpose at this stage of life; attended exercise classes and taken regular long walks alone and with friends; confided in family members; made adjustments in routine;; compared my circumstances favourably with the hardships faced by tens of millions of humans exiled in refugee camps; established friendships with Laurier House residents and some of the staff; taken a short vacation; enlisted help so that I could go out more; inhaled an extra glass of wine when friends have brought dinner; befriended a visiting cat; told my troubles to an imaginary friend; sent gratitude notes at Thanksgiving and celebrated the presence of bacon at Sunday breakfasts. In addition, I have traded much of the time I might have spent sleeping for time spent reading—thereby consuming a list of books that would strike pride in the heart of any bibliophile. At the end of it all I am left with joy, love, hope, gratitude, sorrow, worry, dread and the unshakable hunch that nothing I do will ever be quite enough. All of this is contained within the boundaries of commitment and loyalty that keep me where I am, living in a nursing home, doing the intimate caring things I do for a partner who used to do things for me. Though I don’t doubt the possibility of a happy future, there is no framework that allows me to plan for it. In this unfamiliar state, I am easy prey for every bad feeling that offers itself up for the taking. If there is a difference between sadnesses of the past and present then it is surely this: emotions in this phase have become inextricably tangled together, so that one emotion cannot be replaced by another. Where once my happiness would have been David’s happiness, now it tends to be his sadness, or at the very least, a great inconvenience. Am I delighted to savour delicious food in a pleasant restaurant? Well, sort of, as long as I don’t remember that David was fed nursing home puree from a spoon while lying in bed. Do I eagerly anticipate a concert performance? Well sort of, except that David always feels vulnerable when I am out. Happiness in greater amounts does not replace sadness the way it used to. In some cases, having more happiness means having more sadness. And what is a person to do with the sadness when your main purpose at the stage is to be with someone you love? Perhaps there has been a time when, above the cacophony of emotions competing for my attention, I have been summoned by a still small voice asking: “What would Nellie do?” The answer to the question is, of course, indisputable. Whether happy or sad, Nellie would wallow—wallow with passion and unbridled determination to cool her skin. But wallowing is not as easy for humans as it is for pigs, especially us gregarious, fun-loving types. Our friends and family find it off-putting. Nobody likes a whiner. That said, there are other ways of wallowing. Back in my counselling days, clients used to tell me that they relieved their misery by crying in sad movies. They selectively attended the movies most likely to elicit tears and sobs. It seemed to fly in the face of the cheering up imperative, but for them it worked. As for me, I’ve opted for music to wallow by. To this end I have shamelessly indulged in hours spent with: Superman song by Crash Test Dummies—a true anthem to those who carry on despite the presence of injustice; Falling Down Blue by Blue Rodeo—an ode to the relentless onslaught of grief; I Guess That’s Why They call It The Blues by Elton John—a nod to ecstasy no longer experienced; Killing Me softly by Roberta Flack—heart twisting lyrics; and my current favourite, Angel by Sarah McLachlan. Sarah McLachlan waits patiently in my iPhone these days. She can be coaxed out through the earbuds anywhere, anytime: while washing dishes, or writing this blog, or even on the bus. How blissful it is to lose track of everything in the lilt of her soaring voice, the mournful anchor of the strings, the simple piano elegance! Here is a song penned from a place of pain. The singer lies in a hotel room, trying to sleep amid the wakefulness of a racing mind. She has declared herself not good enough, longed for a beautiful release, and pleaded to be carried off in the arms of an angel. Then suddenly she is struck with a bolt of wisdom. “It don’t make no difference Escaping one last time. It’s easier to believe In this sweet madness Oh this glorious sadness That brings me to my knees.” What’s that you say, Sarah? Sweet madness! Glorious sadness! Words to wallow by if I ever did hear any. And what do these twisted lyrics bring me but happiness in wallowing, as a human no less. It’s confusing to say the least, but Nellie would likely support that.
Saturday, October 20, 2018
The first thing I lost when I moved to Laurier House was my privacy. Funny, but this came as a bit of a shock. We hadn’t been here more than a couple of hours when privacy first reported itself missing. I needed the bathroom, which was in David’s bedroom, segregated by a sliding door. I went into the bedroom, entered the bathroom, slid the door closed and searched for the lock. Not finding it, I searched again. There was no lock. “Of course there is no lock, you idiot,” said a small clear voice in my head. “This is a nursing home! Staff have to have access in order to help the patients. Staff need access in order to wash their hands. Prepare yourself to live without locking the bathroom door.” Learning to live that way put a whole new meaning on the idea of hurry. It was important to always be on guard. Lingering on the toilet became a luxury I could not afford. I refined the process of rapid elimination, and I never failed to listen carefully when I went. Bathing was an occupation I carefully scheduled by setting my alarm after observing the staff activities and projecting the times when they were least likely to pay us a visit. Before I continue, I must stop to explain that nobody who works at Laurier House ever enters a suite without knocking. There is respect for privacy, in an institutional sort of way. They knock, tap tap, and then they enter. It is the same for all of them, RN’s, LPN’s care givers, housekeepers, managers, occupational therapists, physiotherapists, dieticians and even doctors knock, tap tap, and then they enter. If they don’t see you in the living room, they look for you. The knock is not a request for permission, but merely a warning. One second you are alone, and the next second you have company. How do you tell the difference between a visitor and a Laurier House staff member? Visitors wait for permission to enter. In a place where very few residents can get up to open the door, this is the way it has to be. I live at Laurier House, but technically I am not a resident. In institutional terms I am a companion to David who is a resident. In life terms, I am a wife. We have a kitchenette, a living room, two bedrooms and a bathroom that has no lock. Staff come in and go out when we are playing bridge, celebrating a grandchild’s birthday or watching a movie. I can’t say that this time in an institution hasn’t changed me. Clearly it has. Now that we’ve been here for nineteen months, my memory of what it means to have privacy has dimmed a bit. My passion for playfulness has also dimmed. Still there are times when my old silly self surfaces. On nights when the impulse to spontaneity overwhelms me, I wait until the staff have repositioned David, give them a few minutes grace in case they want to return for some item they left behind, then make a mad dash out of my bedroom, through the living room, into David’s bedroom and into the bathroom with more skin showing than I would want anyone other than David to see. I leave the sliding door open, just to prove to myself that I have the power. Then I relish the victory once I’m back in bed. Like all people who gradually become accustomed to institutional life, I lose track of the ways in which I have accommodated to its peculiarities. The other day, when one of the nurses asked me if I get tired of having so many people come in all day long, I had to think for a moment in order to understand his meaning. Was he suggesting that I wouldn’t want to see him? Of course I wanted him there. He was helping to look after David. But then it occurred to me that he was wondering if I felt invaded. “Privacy was the first thing to go when I came to Laurier House,” I told him. “I just try to keep my clothes on.” He laughed. I laughed. It seemed like a laughing matter. Laughing about this comes easily now. But I can’t say it always did. In the first few months of our time here the lack of privacy irritated me, simmering just below the surface. The simmer reached the boil the day after David’s first health crisis at Laurier House. As simmering feelings so often do, it boiled over on an unsuspecting victim. The health crisis developed about three months after we moved in. It was late in the evening, so we didn’t consult the physician who regularly visited David on Friday afternoons. The nurse followed a protocol and we left in an ambulance. I returned to Laurier House late the following evening. David’s fever remained high, and he was still in excruciating pain, but he was finally moving from the Emergency room into a bed on a ward. His brother had come to stay with him so that I could go home and get some sleep. It felt strange to be spending a night in a nursing home without David, but my clothes were there along with most possessions that were important to me. Home is where your stuff is. As I walked down the vacant hallway, stilled with the sounds of night, pausing only to let the staff know I had returned, a tantalizing thought seized my exhausted mind. “David is gone. Tonight I am an ordinary person at home. I will have complete privacy,” I said to myself. “I will take a bath without worrying that somebody will come in. I will even leave the bathroom door open just to prove that I can.” And so it came to pass that I ran the bath, turned off the water, and was just about to step into the tub when I heard a friendly “Hello!” It was not coming from the outer suite door. With the water running I had missed that first one. It was right at David’s bedroom door, and it was not one of the nurses, but rather David’s doctor, our regular Friday afternoon visitor. He had done what he always did, knocked and entered. What choice had I but to scramble into clothes at lightning speed and meet him in the kitchen? There was, at that point, an opportunity for me to respond in kind to a gesture of genuine concern, for it was only concern that had brought him through the door. He had come to Laurier House for some other reason and had taken an extra moment to ask me about David. But the conversation we might have had was doomed from the start. For I was angry, the way you are angry when you have been robbed, perhaps not solely of a peaceful bath, but of so many other things you thought would be yours. And I was tired, too tired to hide it. He, to his credit, despite the lateness of the hour, was able to see past that.
Wednesday, September 26, 2018
Me: (to the rose bush in my bedroom) Okay, Rosie! This is the day you go outside! Rosie: Maybe not Wendy. If you pick me up and haul me through that door, dozens of petals will fall. And you know, I can never, never get those petals back. Me: But Rose, you’ve been in my bedroom for two full weeks now. You’re taller than my shoulder. Your thorns are like swords. Your leaves are making a mess on the floor. There’s a wet spot lurking under your pot on the linoleum. It’s time for you to go out. Rosie: But Wendy! I am covered in opulent blossoms. Several of my buds are still waiting to unfold. I say we keep me right here. We can spend the nights together. I can watch over you while you sleep. Me: Be reasonable Rosie. The huge white geranium went back out a week ago. So did the Martha Washington fully in bloom. The chrysanthemum returned to the patio without so much as a whimper of complaint. The pansies never even came in. I want you to go back out. Rosie: What if it snows again? It snowed on September 12 and 13 and 20 and 21 and 22. You didn’t think I should be out in the snow then. What’s different about now? Me: Well Rosie, it isn’t snowing now, and even though they’re predicting highs of three degrees in the next few days, we’re almost at the end of September. Rosie: Precisely my point. It’s almost the end of September. Winter is coming. You told everybody that bringing in the plants was your personal strategy for pushing back against an early winter. Me: So maybe I’m giving up on that strategy. Sometimes winter in Edmonton starts around Thanksgiving. There are things we cannot change, rosie; things we must accept. Rosie: Accept, you say? You with the thermostatically controlled heating system and the electric blanket Mark and Tracey gave you last Christmas. Go ahead! Put me out there where you won’t see me. It’s fall, you know, and you don’t spend much time out there, especially now that David is staying in bed to heal a pressure wound. You know that David was going out there every day in the summer, but now he’s not. Who will go out there and admire me? Me: Surely, Rosie, you aren’t still craving attention. Dozens of Laurier House staff have sung your praises. Every guest we’ve had in the past two weeks has come into my bedroom to celebrate your beauty. Even our five bouncing grandchildren made a special effort to keep you looking lovely. How much attention does one rose bush need? Rosie: Okay Wendy. Blame the victim. It’s my vanity that’s the problem is it? Put me out in the cold. Watch my petals drop. Offer me nothing but neglect and threatened frost. And after all I’ve done for you! You know what I think? Me: No. You’d better tell me. Rosie: I think you are trying to let go of a few things and using me as the scapegoat, the forerunner of lettings-go. I think you’re using me to prove that you can do it. Me: (sighing the big sigh) this is what happens when a rose bush spends too much time with a psychologist.
Thursday, June 21, 2018
A few years ago our daughter Ruth looked out over the floral profusion on our veranda and front yard and declared: “You people have a flower problem!” We laughed. She meant: “You have a ridiculous number of flowers out there.” I am happy to report that there is good news on this front. We still have the flower problem, only it’s smaller now. A flower problem, so it is said, occupies the space you give to it. On a magnificent June morning I step out on our Laurier House patio. The scent of flowers is positively intoxicating. Deep breaths now, deep breaths. What am I smelling this morning? Is it one of the two varieties of stocks, the alyssum, the bright yellow pansies kissed by the sun? It is probably not the heliotrope, whose fragrant best will emerge some time nearer to mid-day, and it’s not the roses which won’t be open for another day or two. It wouldn’t be the fuchsia or the begonia. They specialize in beauty rather than fragrance. Whichever it is, it smells fantastic! Small patios, I say to myself, have some advantages over large ones. The scents collect and support each other. Then they rush at you in joyous welcome when you step over the doorsill. It’s our second June at Laurier House, our first June with a patio. The two-bedroom suite we occupied last June did not have a patio. So we moved at the end of winter when this one became available. For people who have long been known for a flower problem, this is a definite improvement. Our living room opens to a cozy patch of concrete where I now pet my pansies and stroke my stocks. Tucked in the elbow between the front of the living room and the side of my protruding bedroom, our little patio peeks out through the spaces between the evergreens that shelter it from the bustle of the walk way and parking lot beyond. It’s cool enough to embrace a buffet breakfast on hot summer mornings; warm enough at mid-day to enjoy audio books on cooler days; shaded against the heat of the late afternoon. You can enjoy a glass of wine with friends there before supper. How, I wonder, did I ever get through last summer without this tiny refuge? Last summer this suite belonged to a married couple named Paul and May. I would have been fiercely jealous of them if I had known how a moment out there could transport me into the state of paradise. Unbeknownst to us, they were avid gardeners. Not limited to flowers, they had bonsai trees out there, and tomatoes Paul passed away last winter and his wife May moved out. Without Paul to care for, she no longer needed Laurier House. They left us not only a patio, but a supply of pots and fertilizer that gradually revealed themselves as the spring sun melted the snowbanks. They also left us a social bonus that we had not anticipated. To our surprise, the staff seem as excited about our patio as we are. If we happen to be out there when they come in on an errand, they join us and stop for a chat outside. If they don’t have a job to do, they might stop by anyway. First they admire our flowers. “Just look at that basket of yellow! Oh, what fabulous roses! Let me look at the tag so I can get one with those beautiful colours.” Then they reminisce about Paul and May. “Paul and May had this patio full of garden,” they say. “They had so many tomatoes.” Our hearts are warmed by the attachment they obviously feel. It’s like a promise that we too will be fondly recalled. If they come upon us having breakfast out there, or listening to an audio book, they smile with delight and linger a few moments to celebrate the day. Happiness in this place is a reciprocal process where all parties make contributions to the well-being of the others. I step out onto the patio a dozen times a day, sometimes for an hour with David, most of the time by myself for a moment of pleasure. Most of the days have been warm enough to allow David to spend some time out there too. “I wouldn’t be using this patio if you weren’t here,” he says to me, and he is right about that. He would not be able to move his wheelchair over the ramp and through the door. But we are a team, as we have been since the spring of 1972. Over the years our team member responsibilities have shifted depending on the circumstances. Of all the jobs I currently do, the act of guiding David over the ramps to have breakfast among the flowers is my definite favourite.
Thursday, June 14, 2018
There was food for supper in our kitchenette fridge, but we opted to have supper in the dining room on our first night at Laurier House. Principle had triumphed over preference. In principle, it was best to eat in the dining room because Laurier House is a community as well as a nursing home. David and I have always been community people. In every new place we’ve moved to during 44 years of marriage we have stepped forward to meet the neighbours and join in with local activities. So it made sense to eat in the dining room, even though we had a fridge with food in it. My preference would have been the kitchenette. In principle, we had to pay rent to live at Laurier House, David for long-term care, me as his companion. Food was included in the rent. Why pay again for food you have already paid for? My preference was to buy our own food and eat it in our suite. In principle, we had moved to Laurier House so that there would be a team of people to join me in taking care of David as Multiple System Atrophy steadily progressed. David gave a firm indication that he wanted to act on principle. So we chose it over preference, even though I didn’t want to go there. I had never imagined a nursing home as a place where I would want to live, or a care centre dining room as a place where I would want to eat. When sociable people like us move into a community, its character gradually becomes part of them. They take on its projects, its conflicts, its joys, its aspirations and its sorrows. Having moved several times, we were familiar with this process. Perhaps it was this knowledge, more than any other factor, that explained my reluctance to join the community in the dining room “Pretend it’s a restaurant,” I said to myself. “Fat chance,” myself said back. But we went anyway. Feeling as lost as accidental visitors to a foreign land, we accepted the offer when one of the care attendants came to take us to supper. Perhaps a dozen people had arrived before us. The Laurier House dining rooms are furnished in tables for four. Places are pre-assigned so that the staff can set up in advance. “This is John,” said the care attendant as she positioned David’s chair. “This is David and Wendy.” Then she was off to shepherd someone else. Not counting us, John was the sole diner at our table. It appeared that he was already well into his meal when we arrived. Acting on our natural curiosity, we set out to get to know him. Sociable and curious, we hadn’t been there more than a few minutes when we came up against the first obstacle. We couldn’t figure out why John was there and we didn’t know how to find out. When I was a little girl, my mother taught me a thing or two about asking questions. “Never ask people how old they are,” she said. Later, in response to a transgression on my part she added, “Never ask people how much money they have.” Even later, she added: “Never ask visitors when they are planning to leave.” After that, it was mainly up to me to decide what questions to ask. In the case of John, there seemed to be something I had to know, and I swear I heard Mother say: “Don’t ask people why they are living in a care centre. Wait for them to tell you.” Mindful of her warning, I tried my best to be curious and wait at the same time. While I waited, I contemplated. John did not seem to be a staff member. He appeared so much healthier than most of the residents. Maybe he was a companion like me. But that didn’t seem right either. Laurier House is extraordinary among Alberta Health services care facilities because it houses two categories of occupants: residents and companions. Residents qualify for care services from Alberta Health. Most of the Laurier House residents use wheelchairs. A few use walkers. Some rarely or never leave their rooms. David is a resident. Companions--usually spouses of residents--share accommodation with residents. I am a companion. The ratio of residents to companions is about four to one. This, plus the fact that John was unaccompanied, caused me to assume that John would be a resident. But if that was the case, then it was going to be difficult, without asking directly, to figure out why he was there. John was a friendly, take-charge sort, somewhat older than us but seeming just as young. He was the kind of neighbour you’d like to meet on your first day in a community. When it came to getting past the niceties, he was at a distinct advantage. It wasn’t difficult to see that David was using a wheelchair, or to hear that his speech was impaired. There was stiffness in his arms and hands. His head bowed forward a bit. Knowing we had moved in that very day, John launched an easy conversation about the details of our move. Did we both live here? Where had we come from? Were we comfortably settled in our suite? We wanted to respond by showing interest in him, yet beyond a certain point, we didn’t know quite how. All four of his limbs seemed to be intact. He could hear well and see well. He mentioned driving his car to medical appointments. He had lived here a little less than a year. But what was he doing at Laurier House? The mystery was solved when a care attendant stopped by to put a sympathetic hand on John’s shoulder. “I am sorry for your loss,” she said. When she had moved on, John told us that his wife had very recently died. He lived at Laurier as her companion. . This was a possibility I had not considered, nor did I really want to. Here, on our very first day, we sat within touching distance of a man grieving the loss of his wife. She might have sat here with us if we had arrived a week earlier. At that very moment, David and I were grieving the loss of our regular life together. John must have grieved that same loss not so long ago, and now he was dealing with this new grief. Had we already been friends, we would have known how to talk about this, but as strangers our avenues for mutual consolation were harder to find. John was a stalwart man, resolute in his dedication to moving forward. So we did not speak of grief. We talked of other things. Already he was searching for a new place to live. We followed the details of that search. This is what Laurier House companions do when their spouses die. With no resident to support, there is no reason for companions to remain. Three weeks after we arrived, John was gone. For a brief time he was our best friend. He was the first person we lost at Laurier House and we missed him. The loss I felt at John’s departure took me back a few short years to the time when David’s mother was in her mid-nineties, alive and alert. In the previous twenty years her peers had all died. A social type, she immediately developed friendships in the seniors residence where she lived. But her new friends also died. Yet somehow she had continued on a forward journey with resignation and a surprising degree of optimism. Watching her, I had hoped to follow her example—when I was in my mid-nineties. The opportunity to follow her example came much earlier than I expected. I was 63 and David was 64 when we moved to Laurier House. There was already some illness amongst our peers, but most of our friends and relatives were travelling, volunteering, entertaining friends, and living the life we had hoped to have in our sixties. Joining the Laurier House community was going to expose us to loss at a level we had not anticipated. I am grateful for the time John gave to us. He did not leave without a trace. Instead of talking about grief in his last few weeks, he turned his attention toward settling us into our new future. He taught us how to assist a friendly resident who was constantly searching for her room. He taught us that you could probably be served if you showed up for breakfast half an hour earlier than the posted serving time. He taught us that you could take a breakfast tray to your room, or ask a care attendant to get one for you. He taught us that you could ask the dining room for a litre of milk, or a carton of juice. When I consulted him about a problem with our shower, he said that his shower, left to its own devices, seemed most inclined to point at the side wall. That, he explained, was the reason why he usually chose to bathe. These things we would no doubt have figured out eventually, but we were grateful for the lessons. Time is a clearly defined thing. It takes as long as it takes. Only human perception makes a minute seem long or short. As I write this piece I am aware that I have already been at Laurier House longer than John. The time I spend here is the time I have with David, so I cannot wish it shorter. . In the brief time we knew him, John showed us how life would unfold at Laurier House. People would come. They would hide. They would settle in. The staff, getting to know them, would treat them with affection. Then they would go, sometimes sooner, sometimes later. That was the rhythm of the place. We were at the beginning then, looking for a roadmap to guide us on a journey nobody would ever want to sign up for. We were looking for hope. If John--grieving a loss and facing his second major move in less than a year--could smile through it all, treat people with respect and open his heart to disoriented newcomers, then maybe we could too.
Monday, June 11, 2018
David: Lambert came in when you opened the door. Me: Lambert! You shouldn’t be here! How did you get in? Lambert the Cat: It’s like David said. I walked in when you opened the door. Me: (following Lambert through the kitchenette) But I didn’t mean to let you in. I was only putting the breakfast tray out on the cart to be returned to the kitchen. Why didn’t you meow outside the door like you usually do? Lambert: Because that wasn’t working. When you heard me, you wouldn’t open the door. Now I’d like to stop for a chat, but I need to inspect your suite. Me: (following Lambert around the living room) You’re not supposed to be in here, you know. You are Helen’s cat. Lambert: Helen’s cat, you say? I beg to differ. I am a cat of the world. Me: (Following Lambert into my bedroom) Pardon me, but as far as I know, your food bowl is in Helen’s suite. Your water bowl is in Helen’s suite. Your litter box is in Helen’s suite. That, in my reckoning, makes you Helen’s cat. Lambert: Nice bedroom you have here. Looks like it’s also the computer room. Oh and here’s a keyboard. Do you play the piano? Me: (following Lambert into David’s bedroom) Yes, sometimes. But you really shouldn’t be here, you know. Lambert: (sniffing the laundry basket) I beg to differ. The brochure clearly states that small pets are permitted. This is a nice desk. Did you get that hospital bed here, or did you bring it when you came? Me: We brought all the furniture. And I think small pets are supposed to stay in the suites occupied by their owners. Lambert: (observing the bathroom) A narrow interpretation of the policy, I’d say. Now let’s go out to the living room for our post-inspection chat, shall we? Me: What if a nurse or a care attendant comes in and finds you here? Lambert: (rubbing against my legs) They shoo me out of places where I’m not wanted. But they’ll be fine with it after you tell them you are happy to have me here. This appears to be a comfortable and inviting suite. Would you like to pet me? Me: (bending down to pet) I just don’t know if this is a good idea. If I pet you, you’ll want to come back again. Lambert: (launching himself into a rocking chair) you are a good petter. I feel the quality of experience mingling with affection in your touch. Still, I sense a hesitation on your part. I’m wondering where all this reluctance is coming from. Do you, by any chance, have a history of contact with cats? Me: (sinking my fingers into his fur) Yes I have a history with cats. I grew up on a farm. Our barn was a great home for cats. They helped us keep the mice at bay. Every year they had kittens. I played with those cats all the time. But I was a kid then, and those were our cats. I was allowed to play with them. Lambert (purring) And is there more? Me: Well, yes. Mark had a cat named Kitty. Mark and Kitty lived in our house for years. It took a while for Kitty to get to know me, but he eventually recognized my better qualities. If I do say so myself, I am the kind of person who appeals to a discerning cat. Lambert: standing at the door) Of course you are, and I am a discerning cat. Now, shall I make you an offer? Me: An offer? Lambert: Yes, an offer. I’ll meow outside your door whenever I want you to open the door. I’ll permit you to pet me when I’m in your suite. You’ll let me out when I meow at the door. I’ll be your occasional cat. You’ll be my occasional person. Me: And what about Helen? Lambert: Oh don’t worry about that. Helen fusses a bit when I’m out. She worries that I might be a bother to others. She’d probably keep me in if she could. She can’t quite catch up to me with her wheelchair you know. But I always let her pet me when I come home. Did you know that petting an animal can help to lower your blood pressure?
I don’t believe I have ever heard anyone say: “I hope to move into a nursing home some day,” or “My life goal is to end up in long-term care.” Small wonder! Long-term care comes with a lot of unwanted baggage. According to Alberta Health services, it “is designed specifically for individuals with complex, unpredictable medical needs who require 24 hour on-site Registered Nurse assessment and/or treatment.” It’s not a way of being that anyone would choose over good health and independence. But there are times when we choose places to live based on how we are, rather than how we would like to be. If we find ourselves living in a place where our needs cannot be adequately met, then it is just possible that we might start hoping to move to long-term care. These days people in the Edmonton area can receive long-term care in several types of facilities. There are traditional type nursing homes with single and double rooms. There are groups of long-term care rooms in facilities that also have apartments and duplexes that house people who need little or no care. There is also Laurier House, the place where we currently live. Laurier House is unique in that it accommodates both long-term care residents and live-in companions. David and I wanted to live together in the future and that is why we chose it. It was the most hopeful choice we could find. For many years THE HOPE LADY Blog was an active blog where I thought and wrote about life from a hopeful perspective. My writing slowed and eventually halted as my life became more and more entangled with the progress of a degenerative neurological disorder known as Multiple System Atrophy (MSA). I have the spouse’s version of MSA. That is to say, David has the disease, and I am inextricably linked to him. MSA is, by its very nature, a hope-sucker. It can suck hope out of your life as fast as you can generate it. Before MSA our hopes for the future had been grand, general and expansive. Once MSA introduced its future plan for David, our hopes became narrow and short-term. We hoped each day to make our life together as good as possible. Beyond that, I was in a constant state of preparation hoping to be ready to face the unwanted changes that lay just over the horizon. I had traded the happiness of being hopeful about the future for the hope of being prepared to take charge. It was a defensive kind of hope, a hope enacted to counter-balance the fear of losing control in the face of chaos. I could deal with it, but I didn’t want to blog about it. It is possible that, if our time here had been shorter, this phase of my life would have gone unrecorded on THE HOPE LADY Blog. But now that David has been receiving care at Laurier House for more than a year, and I have built a life for myself here as his live-in companion, I find myself wanting to write an insider’s HOPE LADY perspective on living in a nursing home. It seems a little bit dangerous because I have so many feelings these days. On the down side, I am not immune to attacks of cabin fever. I am devastatingly sad to be steadily losing David to forces nobody can control. I am regretful that we could not have made a sustainable plan to prevent our having to move here. I am envious of the friends and relatives who, early in retirement, are living the lives we had planned to live. I am easily frustrated when the tasks of daily living prove to be harder and more complicated than they need to be. These feelings, I find, are more suited to expression in private diaries than public blogging. Nobody likes a whiner! That said, our life together here at Laurier House has many features that a HOPE LADY would want to acknowledge and record. There is delight and friendship; kindness and competence; curiosity and humour. It helps to notice these things. It is much easier to live each day to the fullest and look forward to the days just ahead when we find it in ourselves to name the things that bring us joy, and thank the people who generously fall in step beside us to lend a hand and an encouraging word on this journey. So begins a series of vignettes describing aspects of my life as a companion to a loved-one in long-term care. If you are reading this, please know that I don’t expect you to suddenly start hoping you can someday live in a nursing home, any more than I would expect you to hope for a bout of cancer, or a broken leg. But I do want you to know that there are options, and there are things each of us can do to help create spaces where people might find happiness in the face of frailty and disability. By the time we qualify for long-term care, most of us will not be healthy enough to advocate for the conditions that would make us comfortable. So we have to rely on healthy concerned citizens to bring such places into being before we get there. I write this series in gratitude to the imaginative people who envisioned Laurier House for couples like us, and singles who would choose to receive care in a place that is more resemblant of an apartment building than a traditional institution. I write it in appreciation of three shifts of staff who do their best to be both efficient and humane. Finally, I write in the hope that we will make it our business to staff the facilities we have at something above the minimum needed for efficient operation. When we need to live in such facilities in the future, it will be because we can no longer care for ourselves. In that case, we will want to live in places where the staff has both the time and energy to care for us--not in a minimal way--but with a flourish, as if we were rare and precious.