Vigil as a Sacred Act

I was lucky enough to find a family doctor on Salt Spring.  I got in on the ground floor of the opening of a new medical clinic called The King's Lane Medical Clinic (which is a great place with a web site that I find completely offensive in its choice of colour and design.)

The office is actually a two-storey dormer style house where 5 G.P.s and several other visiting specialists who come to island on a regular/monthly basis offer their services.

An extremely gentle, small black dog greets you as you arrive. I think there's even a gurgling fountain in one corner at the back. The magazines are really high quality, one that I especially liked related to art in New Mexico. It was very pleasant and my G.P. was approachable, efficient, and a pretty good communicator who seemed really competent. What do I know?

Now, I know it's not fair to compare a sleepy little Gulf Island like Salt Spring Island to Surrey, the fastest growing municipality in B.C., but to put things in perspective, I have never in 50 years been to a doctor's office that looked like the one I saw 2 weeks ago when I was following up on something for my poor 93-year-old father.

First of all, it's a crime that any 93-year-old should be going to a walk in medical clinic but his doctor retired and he should have changed doctors immediately and didn't. If the waiting room at that horrible medical clinic wasn't a big wake up call, I had no idea how much worse it could get until I stepped into Emergency at Surrey Memorial Hospital. It's like a third world country there except they have the supplies and the expertise. Apparently in 2013 (way too far away), they'll have a new emergency as well which will immediately be too small again one assumes but in a more accommodating way.

My dad sat upright in a chair for 8 hours and then got transferred to a bed in the Rapid Assessment Unit which was jam packed with people and the gurneys were a foot apart. At one point I was standing between his bed and the bed that held a tiny little East Indian woman who was sitting up and wouldn't lie down. She didn't speak English. She was blind. She had dementia and her family wasn't there. It was the definition of hell.

He stayed on that gurney for 4 days before being transferred to an ad hoc Emergency overflow on the third floor staffed by Emerg nurses who had never worked up there, didn't have all the supplies, and weren't familiar with the unit. Some were able to hide their frustration and remain professional, a few weren't.

Finally, on the fifth day he was transferred to a two-person room where he has remained for 10 days now and  he is now being given palliative care.

I've watched my mother take her last breath. I've seen my father who was exceptionally healthy until he was about 92 and took a serious fall on one of his Forrest Gump walks, decline very quickly in the past month, and I was the overnight caregiver on Salt Spring for 7 months for an 84-year-old who had a stroke. So, here are a few insights, nothing momentous, just my own.

• You've got one life. It's yours and nobody else's, even if you're married. So, do whatever your inner voice is telling you to do even if your friends or your partner or your dog think you're crazy and don't agree with you. Stop talking about it. Do something different or put your energy into fixing where you're at. Look in the mirror. It's about you, not anyone else, especially if you're not happy. Stop blaming your wife, your kids, your boss, your parents or anyone but the person staring back.

• Real wealth exists in your breath, your physical and mental health, your wisdom, your integrity and your consciousness. All that material stuff somebody will have to clear out once you're dead, is just that: replaceable.  Friends. Family. They matter.

• You will need an advocate when you get old if your family is nowhere to be found or, like me,  you have no children, especially daughters. A lot of people are going to need health advocates when they become incapacitated, temporarily or permanently. It's a whole new area of growth waiting to be mined but requiring individuals with the highest of integrity so as not to take advantage.

• There is no such thing as "lots of time." But, at the same time, "Don't panic," she laughs as she is panicking.

• If you have yet to experience a "vigil" at the bedside of a dying person, you have not experienced getting a glimpse into human fragility as a quick route to softening your heart. Unless you die instantly, you will age and become vulnerable and fragile and dependent in some way. It's a given. If you're one of those people saying, Oh god, I hope I never end up like that, you need to get a grip. Having been at the bedside of both parents who were exceedingly healthy individuals, it WILL probably happen to you too if your death isn't sudden. Seeing someone fade away and become dependent changes your approach to your present and your future. I highly recommend it as a reality check. 

• I'm a slow learner. It has taken me way too long in this lifetime to figure out what really matters - to me - and in general. 

• Death is a very sacred time.  I would honestly feel like I had missed out on a significant part of LIFE had I not spent any time beside my parents' bedsides and been there for them when they most needed me.

Don't be "Circling the Drain"

Yesterday, as I was walking out of Surrey Memorial Hospital, I jumped in my car to head for the ferry and I turned on CBC radio. It was pretty interesting timing. The show White Coat, Black Art with Dr. Brian Goldman was on. The episode was called When Your Life is Circling the Drain.

If you're in a hospital, and you overhear a health care person saying this about you, apparently you're in deep du du - or you soon will be. It's a horrible term. Apparently, it's the slang for about to die as in "Holy shit, he's circlin' the drain."

Somehow the reality of this little problem (that as humans we each have a limited life span) has not been an internalized part of my father's attention. Until the last month, or maybe even the last couple of months, he's never considered himself old because he's always been healthy, able bodied, of quick mind. That makes sense but  it doesn't change the realities of aging. At 92, he says there's "lots of people older than him".


Now, it's probably a really good thing to never consider yourself old. Except, when you're ill and you're 92 and things are going wrong. Then, it might be better to start to think about what it all means and how you'd like your end of life to unfold. But, hey, that's just me.  I tend to be too much of a realist for my own good.

The thing is, navigating "the end of life" requires an amazing level of communication skills. And, men and women from "that generation" are not known for their amazing communication skills when it comes to the really important, emotional stuff.

When you're having to be there for an elderly parent, the unspoken stuff doesn't go away. Like, for example, when you see family members tending to the unwell one in hospitals what you don't see is the family dynamics. End of life duties don't take into consideration that the child who may end up having to do most of the caregiving because of proximity may have been treated badly and unlovingly by the parent. Is that fair?

Is it fair that unlike in the movies, people don't tend to change at the end of their lives. If they weren't able to say anything of emotional significance or acknowledgement during your life, they don't suddenly become Carl Rogers.  It's not a Hollywood movie. Deborah Winger and Shirley McLean are not in the building.  Unresolved resentments only multiply when caregiving is added to the obligations.

What I really dislike about the entire hospital system is that there seems to be so little place for meaningful communication. Visitors and patients become like shuffling zombies. What the patient really needs is not magazines or bananas, they need someone to bring some open ended questions that might initiate some meaningful dialogue. 

What the family needs is a much easier way to get information without feeling like they've just accomplished something major when the doctor is actually able to "be caught" and can then spend less than 5 minutes explaining what's going on. What other business can you think of would you be getting paid to do something so important and never have time to explain to your clients, the details, unless they happen to "catch" you?

It's insulting that after being able to navigate life for 92 years, some doctors still don't see the crucial necessity of dealing with their patient directly. I couldn't help but notice that the doctor told me to come out into the hallway to answer my questions when in fact, he was talking about a patient who is mentally able. What's with that?  It leaves me having to return to my father's bedside to reinterpret the news about all the tests and what might be coming down the pipe. Isn't that his job?

It's all very stressful and sobering and navigating "the system" and trying to communicate "the bigger picture" of what certain decisions will mean requires a level of functioning that needs so much energy at a time when your energy is being consumed by everything else that's going on. 

In short, it sucks and it makes you feel a little bit like you're circling the drain of overwhelmingness yourself.