Thursday, April 25, 2019

AIRA

Family and friends helped me tremendously during the weeks and months after David’s death. But when it came to dealing with the mundane problems that confront blind and low vision people who live alone, Aira was there to ground me. Aira was my newest friend. Aira isn’t a single person, but rather a company dedicated to making information available so that blind and low vision people can do what they want to do. It’s name is an acronym for artificial intelligence remote access. Aira refers to its users as explorers. Before I became one, I’d never thought of myself as an explorer. But, given that explorers tend to be self-possessed individuals who boldly stretch their limits, I like the sound of that. Aira, according to its CEO, believes a key challenge behind blindness is not lack of vision, but lack of immediate access to visual information. The company is on a mission to provide instant access to information for anyone, anywhere, anytime. To make this happen, Aira connects blind and low vision people to human agents. The explorers have cameras, either on cell phones or on specially equipped glasses. The agents see the world through these cameras. They tell the explorers what they are seeing. At a glance, it may seem like splitting hairs to differentiate between lack of vision and lack of immediate access to visual information. But visual information is the thing most people get when they scan a recently arrived letter, or gaze at the traffic signal to see when permission to cross has been granted. You can live quite well without vision, but without access to visual information, your life is necessarily smaller than it ought to be. So much of your time and energy goes into getting that information. It saps your reserves. Perhaps that helps to explain why it pleased me to be designated by AIRA as an explorer. Explorers go after the fullness of life. Explorers get access to Aira services by purchasing time in minutes. I was extremely fortunate to have a friend who offered me some free introductory minutes at the moment when I most needed them. I was moving out of the nursing home suite I had shared with David, and back into the apartment we had purchased three-and-a-half years earlier. I would be living alone. There was no doubt that I would need some help. Take the fridge in my apartment, for example. On the front of it there is a touch screen that controls a lot of things. In fact, it does something whenever you touch it. The advantage of being able to see is that you can tell what it did, and what you have to do in order to undo whatever you accidentally did when you unintentionally touched it. I had a feeling you couldn’t actually turn the fridge off by laying a knuckle on its panel, but what if I was wrong? It was time to call Aira! Facing this unfriendly contraption, I aimed my iPhone threateningly at the fridge and made the call. In less than five seconds, a live human came on the line. “Hello Wendy. This is Amy. What would you like to do today?” I could think of a lot of things I’d like to do today, but I decided to stick with the problem at hand. “I’d like to read the screen on my fridge so I can figure out if I’ve made any changes that ought to be reversed.” “Okay. Hold the phone back a bit. Slant it upwards. There we are. If it’s okay with you, I’m going to take a picture with your camera and magnify it here so I can read the printing.” It doesn’t take us long to figure out that I have accidently switched on the light and turned the ice maker off. It only takes a few seconds for Amy to direct my fingers to the spots where corrections can be made. With the light turned off and the ice maker turned on, Amy’s off the phone and on to something else in less than two minutes. The problem is solved. Without Amy, I’d have had to ask somebody to come over. That time, instead of calling up my friend Bev with a plea to help with my fridge, I could call and invite her to join me on a walk. The move to the apartment presented many opportunities for the Aira agents to work with me. The daily mail delivered dozens of sympathy cards I could not read, and my kitchen, having been used by various guests during my stay with David at the nursing home, was cluttered with cans, jars and packages I could not identify. I wanted to know if my mirrors were clean. I needed the instructions on the package of pancake mix. On my way out to a meeting, I was unable to determine which room was 3-105 in the Education Building at the university. Aira agents gave all the information I needed using my phone camera Suman Kanuganti is one of Aira’s co-founders. He has great dreams for the company, and with good reason, since it has flourished. . It was founded in 2015. In 2017, it provided 20,000 hours of explorer-to-agent contact. It has partnered with companies in creative ways. Intuit now funds Aira services so that blind and low vision business owners can use its bookkeeping services and access its websites. Corporate sponsorships provide free Aira service to all users in 20 major United States airports and a national chain of pharmacies. These days, some explorers wear smart glasses with mounted cameras that can read the text on signs without the intervention of a human agent. As for me, I have dreams for Aira too. I imagine the day when I will be staying in a hotel. Instead of waiting for a sighted person to help me navigate the lobby, I’ll call up Aira and take an exploratory journey past the shops to the restaurant. I might even try to find a store in a large shopping mall. For now, I’m content to pay a monthly fee of $30 US for 30 minutes of Aira service. I can add extra minutes if I need them. For $129 I could get 300 minutes, but this is more time than I can reasonably use. Helping blind people get access to visual information is a major occupation of most sighted people who befriend those with blindness and low vision. Many of my blind friends live happily enough without Aira. They share their homes with sighted spouses who can see whether the mirror is clean or the fridge screen has been corrupted. They do not feel the need to use a cell phone for this type of visual information. In the past I would have been one of them. But family and friends are so much more than providers of information. We need them for all sorts of reasons. Aira has not turned me into a sighted person. It has not entirely replaced the sighted assistance I use to get so easily from David. But now, given the opportunity to assign the mundane tasks to my Aira agents, and the fun tasks to my human friends, I find the idea of living alone to be a little more appealing, a little less threatening than it was the last time I did it. I was twenty years old then. That was forty-five years ago.

Tuesday, April 16, 2019

GRIEF IS A MONSTER

Grief is a monster that springs in ambush when you are least prepared for it. It squeezes the life out of you until you can barely breathe. At least that’s what I’m noticing about grief these days. It’s a recent discovery. I’ve viewed it differently in the past. Monsters were distinctly absent from my prior encounters with grief. I used to experience grief as a heavy burden dragging backward from behind, like an ox cart throwing off hay bales maybe, or the red wagon the neighbourhood flyer delivery families used to pull down the street, lightening their load by dumping bulky catalogues in every mailbox. Or possibly grief was a tunnel with dark walls on the sides and a light at the far end where I might at last emerge, blinking in surprise after the long journey. These things I imagined in my days of smaller griefs. The opening for a bigger grief presented itself to me when my husband died near the beginning of darkest January. His death was not so much a sudden event, but rather the culmination of a long-entrenched process with a predetermined conclusion. Gone forever was my lover, my best friend, the man whose final concerns were driven by his wish that I might have a happy future. There I was, a widow after 45 years of happy marriage, waiting for the burden of grief to drag me back or the tunnel to close me in. But where was the burden? Where was the tunnel. Where was the sadness? I waited for the grief to happen. While I waited, I moved out of the nursing home where we had been sharing a suite. I bought four orchids to flourish in the wintry sun that slanted through my living room window. I sang as I cleaned my kitchen. I played Bridge with good friends and exercised at the YMCA. Now untethered from domestic care-giving obligations, I accepted all invitations to work, play and eat. But where was the burden? Where was the tunnel? Could the process of grieving really be dispensed with so easily? All around me were people who approached me cautiously, looking for signs of my bereavement. I told them all that I was doing fine. To those who seemed to want more I said, “You know, we lived together in a nursing home for the last two years. I am sad to lose him, but it is such a joy to be in my own place again, eating my own cooking, and living like an ordinary person.” It hardly seemed an adequate tribute. But I could offer no better accounting than that. February found me still smiling, serving Sunday dinners to family and friends. I ordered a humidifier for my apartment and booked flights to Ontario and Vancouver. Grieving in a recognizable configuration still had not begun. To people who asked how I was doing I said, “You know, we were close, and we went through nine years of continuous losses. At first he couldn’t skate and then he couldn’t take long walks. Then he couldn’t keep working and then he had to give up driving. Eventually he couldn’t operate the TV remote or feed himself. We mourned all those losses together. So I guess maybe my mourning was pretty much done by the time he died. .” There were days when my heart strings hummed with the tension of sadness, other days when I felt a twinge of longing for the life we had lived together. I greeted these symptoms with some relief. Still, it didn’t seem quite enough. “This is grief,” I said to myself, “And it is not so bad. Perhaps the fact that I am a basically happy person has served to protect me from the worst of it.” February, however, is a short month. March brought the much-anticipated opportunity to visit my beloved daughter and her family in Ontario. Ontario hadn’t seemed so far away when David was ill. Our daughter had made it her mission to be with us as often as possible. Now it was my turn to go to her. With joyful enthusiasm I packed a small bag. It had been a long time since I had been free to travel. I smiled all the way to the airport, joked my way through security and happily read a novel while we passed over the prairies and Northern Ontario. It wasn’t until the flight attendant announced the beginning of our descent that the monster first came for me. One minute I was fine. The next minute I wasn’t fine at all. My chest was tight. My throat was clogged. My body was acting beyond my control, sobs were shaking my shoulders and tears were pouring down my cheeks. I surrendered in bewilderment. At that particular moment there was no reason to be sad and I was sadder than I had ever been. Just across the tarmac, on the other side of a door three little blue-eyed blonds were tugging at their mother wondering; “When is Granny coming out?” I had longed to embrace them. Yet now, at the moment when this could be, my thoughts had retreated to a point back in history, the times when we used to talk about the grandchildren we would have some day. David and I were going to take those children camping. We were going to take them to the zoo. We were going to read to them together and take them to the library. Now David was not here for those things. I was still wiping my nose when I exited the airplane. Never had I felt more alone. Waiting to hug me, as I crossed the threshold, were the bouncingthe apples of my eye, the delights of my heart. So bereft was I that it took all the discipline I could muster to greet them with the enthusiasm I would have felt an hour earlier. Had it been even a little bit possible, I might have curled up on the floor of the arrivals area, clutching my knees to my heaving breast. “Fake it till you make it,” I said to myself. Faking it was the best I could do at the time. Fortunately I would be with them for six days—time enough to restore my equilibrium. Later, with only the memory of the emptiness to show for my sudden outburst, I patted myself on the back. “Now you have experienced grief,” I said. “You got through it all right. Return to the process of building a satisfying life.” So I bought a new piano and played it every morning. I registered at a seniors centre and joined a writing club. I chose spring bulbs and pots of pansies to grow on my balcony. March went out like a lamb. April brought me a plugged ear that required the attention of a doctor. I hadn’t seen this doctor since I left the nursing home. He used to come to our suite on Fridays. We’d worked closely together, giving the best care we could for David. Somehow we’d managed to maintain a cheery disposition and a stiff upper lip in the face of so much suffering and helplessness.. A plugged ear is much easier to fix than a neuro-degenerative illness. In the face of such a simple task I looked forward to telling him about my new piano, my plans for spring, the flowers I was growing. But as soon as he asked me how I was doing, the monster came out of nowhere and nailed me to the chair. I felt the tightening of my chest and my face refused to smile. I took a deep breath to calm myself. Clearly I was not going to be able to tell him about the new piano or the flowers. Acting on its own, with no permission from me, my mouth blurted, “Just sitting here with you is giving me PTSD. “Really?” he asked in surprise. “Really,” I said, for now I was back in the nursing home, trying to live one day at a time, trying not to wish away the together time that remained for David and me, wishing I could do more for him, wishing I could do it better. “That’s funny,” the doctor said. “Being here with you isn’t giving me PTSD.” This, I knew, was an invitation to let it go. The old familiar me would have laughed. The old familiar me would have told him about the pansies and the family dinners on Sundays. But with the monster gripping my neck all I could manage to say was: “I think it’s only my left ear, but you can check the right one.” And when I got home, clear-eared and heart-broken, I lay on my bed for hours, hugging my knees to my heaving breast. “Move past it,” I said to myself. “Forget the monster and go on with your life. Or maybe learn to keep an eye out so it’s not such a shock when it springs.” On my phone was a text from Alayne, inviting me to join her on a trip to the farmers’ market. Alayne was a friend of David’s, then later a friend of mine by association. In those last couple of years she continued to visit, came in the last few weeks knowing David would be unable to speak. I accepted her offer with trepidation, knowing myself to be vulnerable in a way I had not been before. If ever there was a good place for a monster to lie in wait, then that place was surely the farmers’ market, the very one where David and I had spent many joyful Saturday mornings in years gone by. We went so often that the vendors noticed our absences and asked why we’d been away. All my senses were on alert, waiting for the ambush that never came. This visit to the market was not quite like the others. None of the vendors remembered me. I’d been away that long. Nobody wondered how I was doing. With a tremulous awakening of confidence I picked up an opulent hydrangea, then a fragrant Easter lily. I snatched up a jar of my favourite Sauerkraut and added a bag of carrots. Into the mix I threw a package of jerk chicken sausages, fresh pita, hummus, and finally, a chocolate treat made from ground up crickets that I thought I’d take to entertain the unsuspecting snackers at the bridge club. Smiling triumphantly in my kitchen as I unpacked the load, I said, “Aha Monster. I fooled you, didn’t I? You thought you’d scare me away from the farmers’ market, and I went anyway.” But even as I said it, I began to suspect that this grief, which was neither a burden to be slowly unloaded, nor a tunnel with a light at the end, was a smarter-than-average monster. Smarter-than-average monsters are too smart to ambush you when you’re ready for them. They know enough to wait until you aren’t. With that in mind, as I plan my second trip to Ontario, I am hoping the monster never strikes twice in the same place.

Monday, March 04, 2019

GOOD-BYE TO NURSING HOME LIFE (Nursing Home Life, part 15)

“To everything there is a season” Ecclesiastes 3:1 A most extraordinary chapter in my life has come to an end. I have said good-bye to nursing home life. I am well. I am grateful. I am happy. I am wondering. I am grateful: that my city—edmonton—has a place, Laurier House where couples can make a home together when one member requires services provided in the public system for long-term care; that so many relatives and friends integrated time with us into their regular routines, gifting us withcomfort and laughter, the continuation of our past life into the present; That the staff of Laurier House were there to help as best they could, while their call system constantly summoned them to hurry out in service of others; That we had the financial resources to supplement the care at Laurier House by paying for extra care; That we were able to engage private care givers who would join me in caring for David as a treasured person—rare and precious; That we had the funds to purchase new wheelchairs as David’s needs changed and a computer that could speak for him when his own voice could not; That David was able to be with us to celebrate our 45th wedding anniversary, and Christmas with all five of our grandchildren, and Boxing Day with his sister and her family; That David was able to die at our home, in his own bed, attended by our son and the Laurier House staff; That we could keep him with us after death through the afternoon and evening, still warm and more relaxed than he had been in many years, while friends and family gathered in the spirit of a party around him; That more than 400 people attended his memorial and so many others sent messages saying they would like to have been there; That David and I were blessed with a shared enduring love strong enough to sustain us together from our late teens to official senior citizen status; That I could move out of Laurier House and back into the condo we had purchased in 2015, so that it would be there for me when the end came for David. I am happy to be cooking my own food, to be eating vegetables sautéed to crisp perfection, to be showering without wondering if a nurse will open the bathroom door. And inasmuch as I am happy to have moved out of Laurier House, I am even happier to be able to say that I stayed there until the end. I am wondering if I am done with nursing home life. Perhaps I will someday need such a place for my own care. And I am wondering how we could find it in ourselves to look seriously at nursing home life with an eye focused well above the minimum standards, so that they could be places where we ourselves would want to live. A home is more than a physical facility. It is a place where a person can feel precious. Feeling precious, when you are unable to care for yourself, happens when others have the time to care for you. Most of us won’t have a wife to move in with us, and many won’t have the money to hire extra help. Those of us who pay the bills through our taxes will need to set the standards now to provide the time, or risk being cared for later in a hurry.

Tuesday, December 18, 2018

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.

Thursday, December 13, 2018

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!

Sunday, December 09, 2018

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.

Friday, December 07, 2018

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.