Well, Okay Then… February 24, 2013

A good friend of mine mentioned Conscious Departures on Facebook last week and it generated quite a bit more activity than usual. It’s a little ironic because I have held back from posting anything on Facebook since I first published this blog site last March. For most bloggers this might be heresy especially since I have somewhere over 700 Facebook friends.

The reason for my reluctance has been mostly due to the purpose behind this blog, not because I am unclear about it, but because of my own discomfort to encourage people to spend any time focusing on death except as a very good way to put things into perspective. As I explain on the “about” page, I am attempting to get people to think about end-of-life (EOL) caregiving issues before they are smack in the middle of them. Why? Because that’s a horrible time to get up to speed. That’s what happened to me and I don’t want to see that happen to others.

Still, I am more inclined and comfortable to encourage people to think about life, so to get people to think about the dying process has been a challenge and the reason I haven’t broadcast this site too widely. Thankfully I have connected with some wonderfully dedicated and talented “caregiver” bloggers who’ve provided camaraderie and tons of encouragement to keep me going.

But now that the cat is out of the bag among my friends, it has forced me to come to grips with my discomfort. My conclusion is a non-deterred one; that I am not taking people away from focusing on life but just prompting them to take some time to prepare for what is inevitable. After all, when we go on a long vacation we always take the time to prepare without any philosophical fanfare. We hold the mail, maybe unplug all electrical items, call our neighbors to let them know to keep an eye out for the unusual, postpone our newspaper subscription and so on. A couple of major differences is that we don’t know when this vacation will occur and it’s permanent.

To quote Rosalynn Carter, “There are only four kinds of people in the world: those who have been caregivers, those who currently are caregivers, those who will be caregivers and those who will need caregivers.” With caregiving being such a certainty, where is the much needed education? It’s out there but the encouragement… no, encouragement is too weak – the shouting out about the importance of it hardly exists – and I can totally understand. It’s just plain uncomfortable to verbalize urgency for people to focus on the implications of dying. It reminds me of the last segment of Monty Python’s The Meaning of Life when the Grim Reaper pays a visit to people having a dinner party. Everyone around the table is attempting to include the Reaper in their banal conversations, offer him drinks and so on until the Reaper gets frustrated and tells them he’s there to take them and declares  “I am death!”. One of the guests turns to everyone else and says in a very understated way,  “Well that rather casts a bit of gloom over the evening, doesn’t it?”

In a paper entitled Families and Elder Care in the Twenty-First Century, the authors note that, “For most of the nation’s history, caring for the elderly was a family affair carried out largely by women in the home. As the twenty-first century unfolds, however, elder care in the United States is an increasingly complex enterprise, with much personal care outsourced to paid, non-family caregivers.”

The way our society has evolved families are not as tight, women are making careers and families are smaller. When you combine that with a massive increase in the number older people (in the USA an increase of 11 times in just the last century), who are living longer and who’s number continue to grow, you don’t need to be a sociologist to figure out that we are in the midst of a wave in which either professional healthcare services are going to have to expand enormously, or families are going to end up taking up some of the slack – and they already are. Even an amazingly high number of young children are finding themselves as primary family caregivers today.

I was taught nothing about caregiving.  My impressions made it appear messy, complicated and something I was not hoping to ever do.  In my own imagination, and based on my experience, when a person became extremely sick they simply ended up in the hospital. There they could get around the clock attention and would eventually live or die. That’s the way my parents went – in the hospital. Caregiving for my parents meant showing up at the hospital, hanging out with them, talking with the doctors, running a few errands and hoping everything worked out okay. Both my mom and dad seemed comfortable enough.  But things are shifting; more people than ever want to die at home. They want to go peacefully, if possible, in a familiar and warm environment.

There’s a free online caregiving course called “End of Life” offered by Stanford University in which they refer to studies showing that approximately 80% of Americans would prefer to die at home. Despite this, 60% of Americans die in acute care hospitals, 20% in nursing homes and only 20% at home. A minority  of dying patients use hospice care and even those patients are often referred to hospice only in the last 3-4 weeks of life.

So who’s going to do all this “caring at home” when we are all so busy and so few?  It’s no surprise that only 20% of the people get to pass away comfortably at home, our system and culture (at least in the West) tends to push us in that direction. And for those who do I wonder what the experience is for the caregiver. I’ve noticed that most of the news articles you will find on caregiving, day after day, have to do with caregiver burnout. That should be telling us something.

Since having had my own EOL caregiving experience I have spoken to so many people who went through the same thing but with their own twist. Nonetheless, like me, they were unprepared and now, many years later, are still deeply affected by the experience. The grief that follows is understandable, but the experience of caregiving for us non-professionals is so often unexpected containing the sublime as well as unyielding strain and daily surprises. Afterwards you carry around powerful and indelible memories. The lack of knowing and preparedness manages to compound the difficulty and takes away from the entire experience being one of magic. Sounds surprising to use that word “magic”, doesn’t it? But EOL caregiving is just that – magical, and those who have been through it, and go through it daily, know what I mean.

So, though it’s far more comfortable keeping the topic of death under wraps, the situation is that we are all going to have to face a caregiving situation or be cared for. As a potential caregiver it is to our advantage to know what we are going to be dealing with not only physically, but emotionally and “spiritually” as well.

There’s a fear that focusing on death or talking about it may bring it on sooner. I also feared this. I never wanted to give K the feeling that she was terminal, and in my own denial I actually believed that she’d turn things around. Thankfully K was far more pragmatic. Even if it’s true that our mentality can make a difference, at some point it no longer does. And though preparing for caregiving may seem like something we can put off indefinitely, getting educated is important and something we must do. There’s little choice. It’s either sooner or later, and later means under duress.

So, I want to thank my friend Joan for posting a link to Conscious Departures on Facebook. I created this blog because I was thinking of my friends and family anyway. Since I am feeling quite passionate about being prepared early for an EOL situation I may as well be out in the open about it. And for those who are already in the middle of it I hope you are finding valuable support in your community and out in the virtual community as well. With hospice care and the growing wealth of on-line resources you can go about your task with greater ease. You can always check out my resources page for more.