“We want a world where life is preserved, and the quality of life is enriched for everybody, not only for the privileged.” ~ Isabel Allende.

One of the privileges of being a nurse (or anyone in the health field) is that you are confronted daily with the reality, the fragility of life.  I hadn’t had to deal with death or major illness in my immediate family when I was growing up, but once I began my nursing education (a hospital-based program in the UK) it was not long before I had to deal with my first death, encounter terminal diagnoses, and witness some of the harsher realities of our mortal existence.

Before long I recognized that dying suddenly, with no warning, might be a blessing for the one who drops suddenly out of sight.  To go to bed and not wake up, or to be on a trip and have a sudden medical emergency and be gone, no long drawn-out battle with cancer; no difficult rehabilitation from a stroke; no coming to terms with the reality of paralysis; no long goodbye of dementia, is in its own way, a blessing.  But for the loved ones, for those left behind, that sudden departure, no opportunity for last words, the unexpected loss of your partner, parent, friend, must be devastating.

Both of my parents lived way beyond their life expectancies; my mother knew of no one in her family who had even made it to eighty; my paternal grandfather and an uncle were around sixty when they died.  So the fact that both of my parents made it to ninety (and beyond, in the case of my mother) was a surprise to both of them.  When I would teach practical nursing students about aging, I would joke that my parents each represented a chapter, one exhibiting the physiological effects of aging, the other the psychological effects.  But together, as a couple, they were able to live independently and well, up until that last decade of their lives.  My father’s dementia presented slowly, and for a good while my mother was able to manage his health well, building a life of structure and routines that kept him safe and in the home they had come to love.  They were in a village in Wales, close to the sea, with views of nearby mountains visible from their bedroom window.  They had retired from the beauty of Jamaica to the beauty of North Wales, a land of mystery and mist; rivers running down to the sea through green pastures and woods.  A beautiful place to grow old.

But caring for my father took its toll on my mother, and her physical health steadily declined, even as her mind remained sharp as a tack (her opinions had always been sharp!).  And soon that partnership that had seen them through almost seventy years of marriage was no longer able to sustain them living independently, and my father was admitted to a nearby ‘care home’, initially as respite for my mother, though it was clear she could no longer care for him.

He did not last long after that, and then began probably the hardest years of my mother’s life, living without him.  Even before his death, my sisters had been taking her on trips to view different living facilities, anticipating that more care would be needed.  They found a home that would not have been able to accommodate his needs, but in the end worked out well for her.  In the US they are called ‘assisted living facilities’, in the UK they are called ‘sheltered accommodation’, a place where you can live independently, but where help is close by.  My mother had her own ‘flat’ (apartment), complete with kitchen and study, and views of a nearby river, with trees outside her windows where birds would visit.  She could go downstairs for a communal cooked meal in the evening if she desired, and as her physical needs increased, she was eligible for assistance with bathing and other such care.  It was ideal! Two of my sisters lived relatively close, and could visit regularly.  Other family members could step in if they were unavailable.  And yet she always felt that this should not be her final home, was always sure that out there somewhere there must be an ideal situation, one where she would have enough company, enough diversion, enough stimulation to live out her final days to her own satisfaction.

I am at the stage in my life where the end-of-life years are not so far away.  A family friend is currently going through that stage of life where living independently is no longer viable, but is resisting thinking about any alternative.  We are often encouraged to be practical and make preparations for death by purchasing life insurance to pay for ‘final expenses’ so that our families are not struggling to pay those bills.  My daughter (who works with an estate lawyer) is constantly having to deal with situations where tangled financial messes leave families in conflict, and she reminds me that I need to ‘get my own affairs in order’.  But even before those difficulties arise, there needs to be a conversation about those difficult final years, as health challenges arise.

My mother used to say, old age is not for the faint of heart. There are countries and cultures where older adults are cared for in the family home, with the daily tasks of caring for someone who is dependent being shared among the younger members.  The hustle and bustle of family life is both a source of entertainment, and a reassuring presence, for a person who is confined to home.  But in most of our lives, this type of setup is no longer possible, with adult children leading their own busy lives, and grandchildren with their own hectic schedules. 

The reality is that aging brings about a need for compromise, and that ideal solution that my mother was sure existed somewhere outside of her comfortable flat, does not exist.  In the US, where those who have salaries and healthcare insurance for life make decisions slashing funding and eliminating insurance options for many (roughly ten percent of the US population is currently without insurance, and many more are under-insured), most of us are totally unprepared for the reality of long-term care, and are keeping our fingers crossed.

It seems obscene to be living in one of the ‘wealthiest’ countries in the world, when ill-health or aging can bankrupt a family, in an economic climate where families are choosing groceries over insurance premiums.  It is hard to preserve quality of life when the options offered depend upon your financial standing.  There are, of course, policies that pay for long-term care and other benefits, but those who are on fixed income may not be able to find the money for those policies.

This Friday morning I am encouraging us (myself included) to have those difficult conversations with our loved ones, or whoever will be your healthcare surrogate, to think about those future plans.  To recognize that, when you are no longer able to make all decisions for yourself, or to live independently, that there will have to be compromises, and the solution that is in everyone’s best interests may not sound appealing.  But if you are lucky, you may find a nursing home where they play some reggae music, and smiling faces care for you with compassion and empathy.  For if you are lucky enough to live a long life, you will at some point be dependent on the kindness of strangers.

Have a wonderful weekend, Family!

One Love!

Namaste.