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.