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.