THE MUSIC OF CHRISTMAS (Nursing Home Life, part 14)

“Mostly Christmas makes me feel” –Linnea Good Earlier on the blog I made a short list of songs I love to wallow by. But now that Christmas is coming, there are so many more songs. And what better time can there be for wallowing in sadness, nostalgia, joy and completely inexplicable reactions? It’s a musical bonanza, two of my best Christmas weeping songs presented consecutively on a single album, Winter Song by Sarah McLachlan. How magically transforming it is to lubricate the tear ducts with Sarah’s version of Joni Mitchell’s River, in preparation for the heart-breaking torrent of McLachlan’s own Winter Song! I could be tapping my toes to Brenda Lee’s Rockin’ Around the Christmas Tree. In fact, I do tap my toes when it comes on the radio, but when I want to play Christmas music, I Hear myself asking Siri to play Winter Song. It’s not nostalgia that draws me in, it’s the connection to feelings of sadness and loss, the self-indulgent tug toward a moment of melancholy against a backdrop of comfort and joy. . If, like me, you are a closet whiner,sad songs are the perfect outlet for expression. Fortunately, Christmas offers a wide selection of choices with something to meet every emotional need. For example, there’s Silent Night, the song that still holds the record as my biggest crying song. The whole thing started some time in my thirties. I don’t know how. I don’t know why. But every Christmas, I’d be at a concert or a church service and we’d start singing Silent Night. Before we got to sleeping in heavenly peace the beauty of the thing would overwhelm me. The rest of the singers would have to finish singing without me. I’d be sniffling, wiping tears, my throat stretched tighter than a drum. No more singing from me. No particular sadness in it. Here was nostalgia at its most pervasive. Each year that song would start, and I’d remember how I cried last year. The memory would set my glands to drizzling. The first cure for the problem came to me quite accidentally the year I volunteered to play the piano at the late church service on Christmas Eve. The stage was set for the worst of my crying. Near the end of the service the congregation would begin to sing Silent Night. They would pick up the tall candles they had been given when they entered the church. The lights would go down and the first candle would be lit. Then each person would light their candle from the candle of the person next to them. The beauty of the thing would overwhelm me. Normally I’d be a wet rag by the time all the candles were lit and the third verse was sung. But this time I was the musician and everyone was counting on me. The burden of responsibility calmed my nerves. It was a Christmas miracle! All the beauty and no tears from me. I played in heavenly peace. It worked, and I had high hopes for singing that song in the future. But it only worked when I played the piano for other singers. If I didn’t play, I still cried. Then came the second cure. It was the year when another pianist volunteered to play the late service. Members of my family were visiting that night. I packed my purse with Kleenex and invited them to join David and me. Each of us picked up a candle as we entered the church. Then, near the end of the service, Carla played the first notes of Silent Night. As the peaceful music began, my father, summoning the louder voice of a man who has forgotten his hearing aid, turned his candle toward my sister. “Where is your candle?” he boomed. “I don’t know,” she whispered. All was still calm at that point. “Where’s your candle?” he boomed more loudly, thinking perhaps she had not heard him. “I don’t know,’ she shouted back. We’d made it to Holy infant so tender and mild. Then began a scurrying search of the floor for the missing candle. By now we were at the second Silent night, Holy night. Quick as a flash, while shepherds quaked at the sight, I handed my candle to my father to give to my sister. “This is an extra one,” I shouted, hoping only to have to say it once, particularly because it was a lie. I wanted—no, needed—him to be quiet. At that point, all thoughts of crying had left me. I felt like a teen-ager, the way you do when you want to pretend that these people are weird strangers who just happened to cross your path. But my father is a conscientious man. That evening he was bent on making sure that everyone was included. “Where’s your candle?” he asked, glancing at my now empty hand. We had made it to the third Silent Night. At this point, my thoughts turned from utter embarrassment to sympathy for my poor David, the long-suffering man who had, in all innocence, married into this family. His only possible escape could come with a messy expensive divorce, and I just didn’t think he was up to it. I started breathing deeply, lest I should develop a penchant for fainting. I shook my head vehemently at David, who was offering to hand me his candle. “You keep it,” I whispered as loudly as I could. I didn’t trust myself to hold a fire in my trembling hand. Things settled down a bit then. My father stopped worrying about my candle. All was calm, until we got to the end of the song. We blew out our candles and then sat down. There was a snap! There was a soft cry of surprise. There was no point trying to pretend the noise wasn’t caused by my family. It was my sister, jumping up to retrieve the two halves of an unburned candle upon which she had just sat. Apparently it had been on her chair all along. Mercifully the service promised to end. The piano struck the first chords of Joy To The World. Beside me stood David, whom I now noticed, was taking deep breaths in a vain attempt to suppress fits of laughter. Of course the laughing attack spread to me, and then to others nearby, the way a wildfire might spread if you weren’t careful with a candle. Since then I have become philosophical and more than a little curious about the strange relationship between emotions and songs. Christmases come and Christmases go. Each holiday season brings its songs and its feelings. This year I’m choosing Sarah McLachlan for the melancholy effect. That said, I expect to hear Joy To The World, which will likely cause me to break out in a broad smile. And when I’m asked to sing Silent Night, I’ll do my best not to laugh. But I might not succeed in that.

NIGHT LIFE AT LAURIER HOUSE (Nursing home life, part 13)

Sometimes, in the middle of the night, I sleep in blissful peace. Sometimes, in the middle of the night, I hear David coughing. Sometimes, in the middle of the night, the snow plough cleans the parking lot outside my window. Sometimes, in the middle of the night, I wonder why I am so often too hot, or too cold. Is it my hormones? Sometimes, in the middle of the night, a night nurse bursts into song. “Would you like to ride in my beautiful balloon?” Sometimes, in the middle of the night, the lady down the hall screams: “Help me! Help me! Is it more effective than ringing the bell, especially in the middle of the night?” Sometimes, in the middle of the night, David calls my name from his bedroom and sometimes I hear his call. Sometimes, in the middle of the night, I remember what the doctor said when I asked him to prescribe a sleep aid. He said: “What is it that disturbs your sleep?” Sometimes, in the middle of the night, I read an entire book. Sometimes, in the middle of the night, I listen to the CBC morning show from Halifax. It ends at 5:30, Mountain Time. Sometimes, in the middle of the night, I am lulled by poetry and song on CKUA radio. Sometimes, in the middle of the night, I fight the temptation to get out of bed, get down on my knees, reach under the bed, and pull out the packages recently delivered by strangers. My daughter has sent them. Some of them are for me. I could just open them and see which ones are for me. Couldn’t I? Some time, in the middle of the night, I might just do that. After all, there are still 12 more nights to go before Christmas!

SHIFTING AND ROTATING (Nursing Home Life, part 12)

Institutional life has a rhythm. You fall into the groove of it after a while. It picks you up and carries you along. There are things you like and things you don’t. After a while, there are things you take for granted. Twenty-one months after we moved into Laurier House, I find that my emotions twist and turn with unwavering fidelity. I love every third Saturday, when an omelet is served at lunch. I un-love (hate is such a strong word!) every third Wednesday because the dining room will surely serve up plates of cabbage and corned beef. I’ve learned to savour many new flavours over the years, but I don’t think I’ll live long enough to acquire a passion for corned beef. At Laurier House culinary variety pivots on a 21-day rotation. Twice a year they shake up the rotation. Through it all, the cabbage and corned beef has remained. Staffing also has a rhythm, less predictable on a small scale, more so for those of us who’ve been here a while. I’ve taken a particular liking to the evening shift every second month. To be clear, it’s one of four shifts of staff that meet David’s on a daily basis. There’s night, morning and afternoon in addition to evening. The rotations on the other three shifts work differently, though I’m not sure just how. For now, in the interest of simplicity, let’s stick with the one I’ve figured out. You might want to skip the next few lines if you don’t like numbers, or if shifting and rotating makes you dizzy. Laurier House has approximately 80 residents and is divided geographically into four sections. We are on first floor, east wing. Every two months the evening staff move to a different section. They rotate in this fashion until each team has served all four sections. Then they return, eight months after the last time they returned. We are currently experiencing our 11th version of this rotation so we are seeing some staff for the third time. Given that this is their third exposure, they should be able to use their previous experience to show them how to care for David. But wait! David changes a lot in the time it takes to complete a full rotation. Each time they rotate through, they see a different version. His needs are more specific and his ability to express them more limited. David was able to stand up the first time they helped him. He was still eating in the dining room on their second rotation. This time, they are bringing our supper and turning him in bed. Each shift rotation brings a cast of characters, some working full time, some part time and some casuals. New people keep popping through our door, wondering what to do. The process of retraining goes on for a while. I like the second month of every rotation because, by the time a month of trial and error has passed, the care-givers have figured out how to help David. The current crew is learning that David wants his heels on a pillow, his left elbow on a pillow and his head on two pillows. They know that his pills need to be crushed and he can no longer tolerate cranberry juice. They know how to brush his teeth without causing him to choke on the liquid. They know that the shirts he loved to wear at bedtime the last time they knew him have been replaced by hospital gowns. They learn by doing. On the first half of each rotation, David is an experimental phenomenon. On the second month of each rotation he is a person they know how to care for, someone familiar and special. Living an institutional life presents us with many opportunities to second guess. It’s easy to complain about things you can’t control. In general I try to avoid it. On the emotional roller-coaster I ride here at Laurier House I sometimes find it difficult to tell which issues should be addressed and which should be ignored. Take the cabbage and corned beef, for example. It’s presence on the menu affected us differently. David likes corned beef. This is his big chance to have it on a regular basis. You can bet I never cooked it for him. What kind of wife would I be if I asked to have it removed? But then there is the issue of staff rotation. My views on the subject are guided by emotion. I keep remembering the dislocation we felt during the first few weeks of our stay here, and how we began to feel more at home as care-givers came to understand David’s needs. I also recall my disappointed surprise when, without warning, a cast of untrained characters replaced the familiar ones and started the process of dislocation all over again. I hoped I would come to accept these changes as an institutional necessity, possibly an inconvenience. I had hoped I would get used to re-experiencing the feeling of being strangers here. But I never have. Home in this phase of our lives is a suite in long-term care, where we watch David’s health slide slowly with dozens of care-givers shifting and rotating around us. we have met many care-givers who are generally interested in doing the best work they can do. Familiarity with the best possible job appears to breed empathy, competence and loyalty. I feel sad that the system is so obviously organized to discourage familiarity because those who are familiar with David’s needs are so much more capable of making him happy. I appreciate the second month of every two, when familiarity on the evening shift takes the place of experimentation. I dream of a system that would value familiarity, a place where the staff wouldn’t rotate, where David would only be served by familiar staff on four shifts, maybe as few as three shifts! I like to think it could happen, and would happen if only the people who organize our systems understood how it feels to be helped so uncertainly so often by so many. But now, accepting things as they are, I care for my own mental health by making a point of noticing the day on which the reassigned care-givers cross the bridge from uncertainty to familiarity. “Will you be back tomorrow?” I ask them hopefully. In the up and down rhythm of institutional life, it’s a good day when they say they will.

NORMAL (Nursing Home Life, part 11)

Feeding a pureed supper to David in bed is one of the jobs I’ve taken on here at Laurier House. Given the choice, he would prefer to be chewing his food, feeding himself with a fork and sitting anywhere other than in bed. Butt here he is. I am feeding him because he chose me for the job. Being chosen for this task is one of many surprises in my current life. My previous puree experiences occurred nearly four decades ago when our children were babies. In preparation for parenthood I had read a book that suggested the need for a blind feeder to locate the mouth of the fed-one with one hand and hold the spoon with the other. I tried it on Baby Mark. Mark, at a tender age, had yet to achieve a command of language. Despite this barrier, he was clearly able to communicate. He responded to my first attempt by making a rule for living: Never allow yourself to be spoon fed by a blind person! Here was his reasoning, so far as I could understand it at the time. “A blind person wielding a feeding instrument is a dangerous character. Trapped in your high chair at the mercy of such a person, you could lose an eye, snort peas into your nose, or later find yourself fishing chicken out of an ear. At the very least you might get a sloppy chin. Fortunately for Mark and the siblings who followed him, mothers are known for their ability to understand the wishes of their babies. The situation might have posed a problem were it not for the fact that David was quite willing to feed the children whenever feeding was required. I responded with benign acceptance. Apparently it never occurred to me to assert my competence, or my right to be treated equally as a mother. I did not feel slighted or rejected, and if I felt any regret I have forgotten it. The question of my using cutlery to feed anybody was laid to rest. It rested in peace for nearly four decades. We moved to Laurier House in preparation for the time when I would require significant help in order to meet David’s needs. That said, it would have been difficult to predict in advance which needs would be met by the staff and which would be met by me. Choices have been made at various points along the way. David is a fully-informed adult, definitely not a baby. So when I give him a choice about something, I try to ensure that it is a real choice. I recall the way we used to present choices to our two-year-olds when we were trying to rush out of the door in the mornings, already at risk of being late for work. : “Shall I put your shoes on now, or in fifteen seconds? Shall I start with this shoe or the other shoe?” So perhaps I ought to confess that it was a little disingenuous for me to ask a question when I never doubted what the answer would be. In my mind, there was only one choice. Nonetheless, I asked the question. “Would you rather be fed in bed by me or by the staff?” “You,: he said. “Me?” I said. I thought I must have misunderstood. “You,” he said. I didn’t ask for an explanation. It seemed wise to assume his choice was motivated by love. “Shall I use a spoon or a fork?” I queried, blundering uncertainly through this uncharted territory. “Spoon,’ he said. No doubt about that answer. The man still values his eyes and recognizes that his nose is more vulnerable to a misdirected fork. I see now that there was wisdom in the book I consulted so long ago. If you are a blind person who has been chosen to feed another person you can use one hand to find a mouth and the other to guide a spoon. A bib and a cloth will help you compensate for any errors you might make. This is our latest version of having dinner together at home in this unlikely place. I feed David while we watch the 5:00 news. And where are the children whose mother never fed them from a fork or a spoon? Well, just the other night Mark brought two of our grandchildren to stay with us while he tooke their mother to dinner. He brought food for them. The youngest of Mark’s children is Baby Lewis. Baby Lewis doesn’t talk yet, but his mouth is sporting two beautifully sharp teeth. I positioned his little chair near David’s bed. There he sat, scooping fries into his fists, using his built-in blades to saw them off. While he ate, he watched me use two hands to feed Granddad with a spoon. His sister Carys sat nearby, two-and-a-half years older and a thousand times wiser. The nurse who brought David’s puffer seemed a bit surprised to find us there, but to the four of us, everything seemed quite normal.

EATING IN THE BEDROOM (Nursing Home Life, part 10)

There were a few absolutes when it came to my mother. There was, for example, ‘don’t bite the bottom off of an ice cream cone.” It was a warning, not a response. So I tried it once at a community picnic on the steps of Cambridge school. The results were—unpleasant! Sticky ice cream dribbled down my legs and settled on the steps. Neighbours began to shout for help. Mother appeared. “I told you not to do that,” she scolded. I believe this was my first true public humiliation. A second absolute proved to be just as wise, and not quite so publicly embarrassing. “Never go to bed with gum in your mouth,” she warned. I didn’t get breakfast the morning after I tried that. Mother used the time to cut the gum out of my hair. I still had time to catch the school bus. When people said, “You got a haircut,” I simply nodded. I tested both these absolutes in early childhood. It took me longer to test another. “Never eat in bed,’ said my mother. It would have been difficult for me to eat in my bed even if I’d wanted to. Somehow I would have had to get food without her knowing, sneak it past her and carry it all the way upstairs. I believe this absolute remained untested until the winter of 1973, when I paid a spring-break visit to my boyfriend David who was studying at Acadia University in Wolfville NS. On that brief vacation, the act of eating in bed seemed insignificant compared with other rules that were falling by the wayside. For example: “No girls allowed in the boys’ residence” and “Never sleep with a man until after your wedding.” In the heady confusion of all this disobedience, can you blame me for forgetting my mother’s long-ago given advice about eating in bed? At that time downtown Wolfville was served by an IGA grocery store. It was impossible to enter that store without succumbing to the fragrant seduction of the cinnamon sugar doughnuts rolling hot and fresh off the conveyer belt. Can you blame us for failing to consider what the consequences might be if we ate them in David’s bed? When advising my children, I was more specific than my mother had been. I said: “Never bite the bottom off an ice cream cone because the ice cream will pour out and you will be made to clean up the ness.” To my children I said: “Never go to bed with gum in your mouth because if you do, it will tangle in your hair and I will have to give you a haircut.” To my children I said: “Never take cinnamon sugar doughnuts to bed. The sugar granules are most uncomfortable to lie on.” By that time, the practice of sharing a bed before marriage was so widely accepted that it hardly bore mentioning, and I hesitated to launch a detailed conversation about the experience of rolling around on a bed of sugar granules. All of this came back to my mind when I read the message my iPhone delivered from my good friend Rob on the second day of December in 2018. “David and Wendy: Thank you for a really nice evening together. I think we should always have bedroom meals. Much more comfortable than formal dining rooms.” Oh, what would my mother have said? Perhaps I ought to say a word or two about the evening that prompted the note, though it seems a shame to muddy the truth of a story by presenting the facts. Rob Jennifer and I had spent the evening sitting around a card table at the foot of David’s bed, drinking two kinds of wine while eating brie and tortiere with mango chutney. David had already dined on a plate of pureed something-or-other from the Laurier House dining room and a glass of thickened water. We weren’t quite as insensitive as it seems. Even when David was able to sit at formal tables with the rest of us, he never cared for any meat wrapped in pastry, and he has declined all offers of thickened wine since the first time he tried a little of it on a teaspoon. In addition to the other provisions, Rob and Jennifer had also brought a carton of his favourite Christmas ice cream. All four of us enjoyed a bowl of that and delighted in an evening of love and laughter. Neither sugar granules nor any other traces of food were left in David’s bed. It is possible that a future archaeologist, unearthing an iPhone might misunderstand the simple message from rob. So I wanted to clear up any remaining ambiguity here. That’s my story, and I’m sticking to it.

VISITS FROM THE DENTIST (Nursing Home Life, part 9)

Our dentist came by the other day. It was his second visit to our suite at Laurier House. The first time he came he launched his customary social chat before looking in David’s mouth. It was a one-sided chat. David thinks very clearly, but says very little these days. “It feels awkward talking at you instead of having a real conversation,” Scott said to David. I laughed. “Isn’t this what dentists do all day, conduct one-sided conversations with people whose mouths are immobilized?” “I guess so,’ he said. “But this is a bit different.” I was relieved at his honesty. I’ve noticed that there seems to be a curious relationship between being open about discomfort and being willing to persist in spite of it. On this second visit, he adjusted David’s bed to a favourable position, looked in David’s mouth and painted his future cavities with a compound designed to protect them from further deterioration. Then he showed me how to check for infections and offered to borrow space in a wheel chair accessible dental clinic if serious dental work was required. . He said he’d be back in four months. “Thank you for coming here,” I said. It felt like understatement to me. It seemed such an inadequate response, given that Laurier House is not convenient to his office or his home. “I wanted to do it,” he replied. I didn’t doubt that he meant it. He knows how important dental work has been to David. In the days when he was independent, David would never have missed a check-up, or passed up an opportunity to improve his dental health. Scott has been our family dentist for ten years or so. He’s been a partner on this journey. We never asked him to come to Laurier House. He simply volunteered to do it when I told him that David wasn’t able to get out to see a dentist. He first knew David as someone who wanted a 7:00 AM appointment so he could squeeze dental work in the time between an early morning six-mile run and a punctual appearance at the office. Then came the time when every visit showed us how Multiple systems Atrophy had changed David’s body in the six months since the last. The Journey to care for David’s teeth has continually been hampered by obstacles and problems that needed solutions. I remember how the small spaces around Scott’s dentist’s chair seemed to shrink when David started using a walker, then shrank beyond recognition when we had to take the wheelchair into the office and use the walker as a support to help him transfer from one chair to the other. It was Scott who suggested that we start taking David to a wheelchair accessible office. This meant changing dentists, and we tried that. But David wanted Scott. So we compensated by taking two men to every appointment to assist with David’s transfer. It was Scott who suggested that we hydrate David’s mouth to keep his teeth healthier. That was several years ago. It worked then. On this visit we told Scott that we now use drops to dehydrate David’s mouth to keep the fluid from building up in his chest. He shrugged sadly and said he’d do the best he could in the circumstances. Sometimes this journey through David’s progressive illness feels a bit like one of those hop on hop off city tours we used to take. There are many stops along the way. People get on. People get off. There really aren’t words to describe how grateful I am to those who stay with it, for David or for me. They have to be tough enough to witness the slow and painful progression. They have to be confident enough to do things they can do and humble enough to avoid being overwhelmed by the things they cannot fix. In return, David and I do our best to be cheerful and positive, but we’re not exactly fun to be around, and it’s quite some time since we’ve been in a good position to return a favour. I try to remember to be amazed at the number of people who stay with us in spite of their freedom to go. I will not likely be able to pay them all back, but perhaps I will have a chance to pay some of it forward.

BOREDOM AND THE TALE OF THE SALT FAIRY (Nursing Home Life part 8)

They were decorating pumpkins down in the dining room the first time I noticed it. It was just a few little crumbs on my kitchen counter beside the sink. “Could have come from anywhere,’ I thought. They were passing out Hallowe’en candy down in the dining room the second time I noticed it. It was just a few crumbs on my kitchen counter. “Maybe I didn’t clean them up properly last time,” I thought. “Could it be some toxic residue falling from the ceiling tiles?” I wondered, the third time I noticed it. So I licked a grain off my finger and waited to die. But all I tasted was table salt. “I must be spilling it when I salt David’s morning egg,” I concluded, the next time I noticed it. And from that time on, I made sure to salt David’s egg on the kitchen table. And yet, once in a while, there would still be grains on the counter. “Must be the salt fairy,” I decided the next time I found it. I looked up “salt fairy” on the Internet. The Internet did not disappoint. It provided a book of fairy tales about salt. These tales are much like other fairy tales in nature. Poor girls are turned to princesses because of salt. Tears turn to pearls because of salt. One of the tales tells of a mill that forever grinds salt because nobody knows how to make it stop. That particular mill has sunk to the bottom of the ocean, salting the waters forever. But if there could be one such mill, might there be two? “There must be a magic salt mill in here,” I concluded, “and maybe a fairy to turn it.” Since every fairy needs a tale, I set out to craft one. THE TALE OF THE SALT FAIRY By Wendy Edey Once upon a time there was a not-quite-old-enough-and-too-healthy woman who lived in a nursing home where she helped to take care of her husband. On certain days, at certain times, she was very, very bored. “I’m bored,” she whined. From far away in a distant land, a fairy god mother heard her wails and came down to help. “Read more books,” she suggested. For she had been a real mother before she became a fairy. “Boring,” said the woman. “Watch more TV then,” she suggested. It wasn’t her favourite option, but it would do. “Boring!” said the woman. Now she was at her wits end. “Play Bingo in the dining room,” she suggested. “Boring, boring, boring!!!” cried the woman. One day the fairy god mother got an idea. “I will create a mystery for this woman to ponder,” she whispered to herself. “That will keep her from being bored.” Fairy god mother set to work on a plan. Some mornings, not every morning, but just some mornings, she picked up her enchanted salt mill and sprinkled a few grains of salt on the kitchen counter. And the woman, now occupied by the process of wondering how the salt came to be there, stopped being bored and lived happily ever after. That should have been the end of it. Nothing ever happens in fairy tales once they’ve lived happily ever after. But every morning at 10:00, one of the nurses comes in to crush pills and feed them to David. One morning the nurse on duty brought a nurse in training. “Take the salt shaker off that shelf there and bang it down on the pills,” she said. “Then put the salt shaker exactly where you found it, in case Wendy is looking for it.” And even now, I don’t think she understands that when she bangs the salt shaker on the pills to crush them, a few grains leap in the air and escape through the top. And even though there is now a new theory to explain the few grains of salt on the kitchen counter, I’m sticking to my story about the salt fairy.

WAITING (Nursing Home Life, part 7)

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.

WALLOWING (Nursing Home Life part 6)

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.

BEING PRIVATE (Nursing Home Life part 5)

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.

A CONVERSATION WITH ROSIE

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.

PATIO PARADISE (Nursing Home Life part 4)

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.

JOHN THE MENTOR (Nursing Home Life part 3)

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.

LAMBERT THE OCCASIONAL CAT (Nursing Home Life part 2)

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?

THE HOPE LADY RISES TO THE OCCASION (Nursing Home Life part 1)

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.

REMEMBERING PIRATE

A dog named Pirate died in Calgary on April 20 2018. He died a peaceful death with medical assistance. You may have known him by another name and longed for his return. If so, we want you to know that he lived a good life, all things considered. His death will be mourned by many people who encountered him in the course of his life’s journey. One of them is me. Pirate was a lucky dog, lucky in a context of hope, which is to say that a considerable number of bad things happened around him and somehow he managed to move forward with his own special blend of forbearance and enthusiasm. If he had a motto, a code to live by, I believe it would have been: “Seize the day and love the one you’re with.” Pirate was a white dog, a white dog with some brown. According to veterinary estimation, he was born some time in 2003, Part Shih Tzu, part terrier. He was a small, one-eyed curly-tailed creature whose complete life history has thus far been shrouded in mystery. We can trace it with certainty back to an August day in 2005 when Maxine Thompson of Lougheed Alberta noticed him wandering around Main Street, searching for a lover, or a friendly human. We’ll never know which it was, possibly both. He wore a tattered leather collar that bore no identification. His mud-caked hair hung low off his belly and drooped over his face. Maxine, recognizing a probable resemblance to a well-groomed Shih Tzu belonging to my father, asked Dad to take charge of his care. She promised she would find him a home if his owner had not been identified by the time she returned from an impending vacation. Thus my father began a process of bathing and trimming and ratty old collar disposal that eventually revealed a dog much life his own, except for the missing eye and the fully functioning proof of manhood. It also became obvious that, at some previous point, this dog had both learned to love humans and to build good relationships with them. Two weeks passed with no person stepping forward to make a claim. My father’s dog and his new playmate became fast friends. Maxine was still enjoying her vacation. Dad was rapidly taking on the mantle of a two-dog man, a man in serious danger of keeping two dogs when he needed only one. So he decided to give the dog to David and me “You need a dog,” he said. “Here is a free dog. He’s even house-trained.” Dad was right about one thing. He was, in fact, house-trained. Together on separate journeys, we and Pirate were to learn that there is no such thing as a free dog. We welcomed the dog into our Edmonton home with a brief tour that included a visit to the food bowl. Almost immediately new responsibilities began to emerge. The first was to give him a name to which he could answer if he should somehow escape from our unfenced yard. The second job was to build a fence, seeing as how he escaped from our yard at the first opportunity, and every subsequent opportunity, claiming our entire neighbourhood and the adjoining river valley park as his own. The third job was to find a veterinarian who could reduce his sexual longings and possibly his need to wander, vaccinate him against all forms of pestilence and advise on what should be done with the empty eye socket. David suggested that we call him Pirate. It seemed a good fit for a one-eyed wanderer who’d been living rough. Pirate thought so too. It only took him a day to get used to coming when we called him for a treat or a walk. Building a fence took a little longer. With considerable assistance from two sons and a neighbour, David fashioned a smart white picket fence enhancing the front exposure of our colonial-style home. A Caragana hedge provided protection at the side. The vet vaccinated Pirate against multiple threats, then performed four surgeries for which Pirate was not entirely grateful, one to eliminate the lust for fatherhood, one to clear the eye-socket of debris, and two more eye surgeries to clear debris that stubbornly remained. By the time he’d been with us for a month, we estimated the cost of our “free dog” at approximately $3,000, not including food. Nevertheless, Pirate continued to pursue the idea of being a free dog. From the very start, he consistently showed us two things. The first was that he loved us. The second was that he was committed to living a life befitting his new name. He showed his love by welcoming us home joyously whenever we returned from work, allowing us to pet him when he wasn’t busy, promoting our physical and mental health by insisting on daily walks regardless of the weather, and encouraging us to experience generosity by giving him unlimited treats. He established his reputation for piracy by claiming his right to free himself from bondage by any available means. There seemed no end to the methods he used to assert his freedom. In the days before the fence, he simply declined to observe the yard boundary. When we attached him to a chain, he paced up and down the veranda steps until the chain lodged in the cracks between the boards, then insisted that we free him immediately. When we replaced the chain with a rope, he spent ninety peaceful minutes chewing the rope into six-inch lengths, thereby rendering that rope ineligible for further employment. And when the fence was at last established, he dug a hole between the stocks of the tcaragana hedge and had already found some stinking dead thing to role in by the time his skulduggery was discovered. Yet it seemed that Pirate did not want to be free so much as he wanted to believe that he could be free if he chose to be. One night I heard him barking, so I went to the door to call him in. The louder I called, the louder he barked. At last, rushing barefoot into the yard to retrieve him, I found him on the outside of the front gate, demanding to know why it had taken me so long to open the gate so that he could come in for a treat to reward him for coming back instead of making us search for him. “Why didn’t you come back via the route through which you escaped?” I asked, while opening the treat bag. “The escape route only goes one way,” he replied. “Don’t you worry that you’ll be lost and uncared-for like you were when Maxine found you?” I asked. “Don’t you worry that you’ll be hit by a car when you’re wandering the streets?” “No,” he replied. “Why would I worry? I do okay, don’t I?” “You’re counting on luck,” I retorted. Indeed, he was a lucky dog. When we lost him in the park, a neighbour recognized him and brought him back to us. When a cat threatened to scratch out his other eye, he managed to negotiate a peaceful settlement. When I was hit by a car while holding his leash, he avoided being run over. Pirate was a digger. On the days when he wasn’t trying to escape, he dug holes for reasons we could not always understand. The second time he dug a hole in the middle of the lawn, we informed him that he simply had to change—or else. Or else what, we wondered when we saw evidence of the third lawn digging. Faced with Pirate’s reluctance to change his behavior, I e-mailed a letter of inquiry to an expert. “How can we convince our dog to stop digging holes?” The response was prompt and matter-of fact. “Terriers dig,” said the expert. “Get over it. Give him toys to play with, establish places where he is allowed to dig, and treat him so well that he won’t want to escape.” We bought more toys and considered ways to treat him better. “You can dig behind the pink peony,” I told Pirate, while dusting myself off after the first time I fell into the hole he had secretly dug behind the pink peony. “Thank you,” he said, failing to mention the new hole he had already dug behind the white peony. He’d buried a toy back there and apparently needed to dig it up. “You might as well dig behind the red peony too,” I said a few days later. So he did. Then he went back to digging under the hedge. The sons who had built the white picket fence unfurled a role of chicken wire which they installed amongst the stocks of the hedge. Digging under the chicken wire took longer than digging through the hedge alone. We considered this to be a victory. As the expert had told us, terriers dig. He was a dog who never failed to answer when opportunity barked. When a big scary canine would pass by the front gate he would tear across the yard at top speed, furious and threatening things he would do if only that gate weren’t there to protect the interloper. We never had to go home early to let him out because he could control his bodily functions for 12 or 14 hours. But if we returned home after a fifteen minute outing, it would be absolutely necessary that he should go out. He could manage fine in a daytime thunderstorm, but thunder in the night would catapult him trembling into the space between us in our bed, issuing a challenge. “are you the kind of unfeeling people who would force a frightened dog to sleep alone in the rockingchair?” If our mother had died, or our father, or our sister, if we were recovering after cancer surgery, or nursing a broken foot or a broken arm, he would nuzzle us sympatheticly for a few minutes, then invite us to move past the pain by taking him for a walk. Though his digging made us think of him as a terrier, he was only part terrier. Another part of him was Shih Tzu. Shih Tzus are known to be serially loyal, meaning that they attach easily to humans, then reattach to new humans just as easily. Knowing this, and knowing that he had once been known by some other name, I guess there was always some part of me fearing that a previous owner would come forward and claim him. After all, someone had taught him to love humans and to empty his bowels and bladder in appropriate places. This fear was repeatedly tested during more than 3000 walks in the 10 years we spent together. We walked in an off-leash dog park where people were constantly calling their dogs by name. I couldn’t help but wonder what Pirate was called before we named him Pirate. It seemed inevitable that one day, someone would shout; “Here Herbert!” or “Here Rover!” Then Pirate, recalling his past, would run to this person, tail wagging. So it didn’t seem all that surprising when, in the eighth year, a stranger walking toward us in the park said, “Is that Gracey?” I was speechless. “Pardon me?” said David. “Is that gracey?” “No,” said David. “It’s Pirate.” “It looks like Gracey,” said the man. “But maybe it isn’t.” Then he continued on his walk. I wondered if he was on his way to the police station to report a dog theft. “Are you Gracie?” I whispered fearfully to Pirate when we got home. “Please don’t be Gracey.” Pirate didn’t answer. If he was Gracey, he wasn’t letting on. That night I went to bed wondering what would happen if Pirate turned out to be Gracey. I needn’t have worried. He wasn’t Gracey. We were assured of this a few days later when, on another walk in the park, we came face to face with the real Gracey. There she was, a little white dog with brown markings, curly tailed, one-eyed, a mirror image of Pirate. Facing each other their good eyes met and so did their missing eyes. Apparently it’s not all that uncommon for Shih Tzus to be missing an eye. It has to do with the structure of their faces. Pirate may not have lost his eye in a fight as we had originally suspected. It might simply have fallen out. Serially loyal dogs like you better than other people during the time when they live with you. Pirate liked most people well enough, and some especially well. One of his favourites was Wayne, who lived in Calgary and was married to David’s sister Lorna. Wayne liked to take Pirate for walks when he was visiting us. Perhaps every stage of life is a stage of transition. Pirate was around during times of letting go, of giving up beloved patterns and future plans we didn’t even know we had until suddenly they were derailed. But while we agonized over the changes, he went forward, seemingly unflappable. Pirate’s ability to transfer loyalty served him well. His attraction to Wayne proved to be a lucky attachment. David developed disabilities that forced us to move from the colonial home with the smart white picket fence and the reinforced Caragana hedge. What were we to do with Pirate? “Wayne needs a dog to walk with,” said Lorna. “We’ll take Pirate.” Grateful as we were that he had a new home to go to, we couldn’t hide our tears when Wayne and Lorna loaded their van with Pirates toys and moved him to Calgary. I last saw Pirate a couple of years ago, on a brief visit with Lorna and Wayne in Calgary. He greeted me with pleasure, jumped into my lap for a five-minute pet, then ran upstairs to crawl into bed with Wayne. He and Wayne were still together there when I left the next morning. The switch of allegiance was complete. Given that I couldn’t keep him, I had to love him for that. Pirate was with Lorna when he died, having transferred his loyalty to her. He would have stuck with Wayne, but Wayne had become ill. He had moved to a care centre. In the process of dealing with Wayne’s illness, they’d exchanged their home for an unfenced retirement duplex. Unable to build a fence, Lorna developed the habit of walking Pirate several times a day. This is how they lived until a series of seizures rendered him unable to stand without falling. “I’m sorry you had to deal with Pirate during such a difficult time,’ I said to Lorna when she told us that he was gone. “Oh, don’t be sorry,” she replied. “I miss him. I get home from visiting wayne and he isn’t there to greet me.” David and I know how she feels. We miss him too, though in a different way. We miss the petting sessions and the snuggles and the endless toy tugging competitions that Pirate always won. But beyond that, we miss the life we had when Pirate first came to us, a life where the future promised an untapped reservoir of good things and we had the freedom to say: “Sure we’ll take that dog.” If he could give us advice at this point, I feel certain he would say: “Look around you, see what you have, make the most of it and move on when you need to.” This we have tried our best to do. Somewhere out there we suspect there is a person who once lost a friendly little white diggedy dog, a dog with brown patches who dreamed of being free. We don’t know what your life was like, or how you came to lose him. But if you are that person, or any other person who loved Pirate, we are truly sorry for your loss.