Thursday, December 13, 2018
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!
Sunday, December 09, 2018
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.
Friday, December 07, 2018
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.
Monday, December 03, 2018
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.
Sunday, December 02, 2018
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.
Thursday, November 22, 2018
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.
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.