At a recent awards ceremony, Emergency and Palliative Care physician, Rebecca Aslakan referred to the challenge of building respect for Palliative Care as a normative practice as being “messy”. Funny word. Shifting a dominant cultural model of preserving and prolonging individual life as the highest priority, to a model in which preference is for quality of life over longevity is not a simple sell. Messy? I might use a stronger word.
Although Death has been with us for as long as we know, we are in un-charted territory. National and Global population has never been this dense. More people are living much longer, our family lives are more avant-garde than traditional, and we’ve never before had more medical options available for everything. From birth through death, and everything in between, our medical/ pharmacological/ technical ingenuity offers solutions to what ails us. What it can’t do is prevent death. Although not as certain as death, many of us will need care, and many of us will give the care.
“At some point you have to leave home and embrace a larger world. That is the pre-requisite for caring for others” (Chogram Trungpa)
It’s A Small, Small World
You know that song? It’s one of those that, once I hear it, seems to stay for a week. Is it a small world? Or is it infinite? I don’t think it’s either/or. I think it’s both/and. Our world can be very small when our experience is dominated by what’s happening to our bodies. Pain and fear have enormous capacity to shrink the size of our world in a hurry.
Our personal world, our world-view, and what we consider important, is shaped by the degree to which we are exposed to, and influenced by different places, people, things, information, ideas, even what we eat. It was a long time ago that the wake-up bell rang for me and I realized that I needed to experience people who are different from me, as well as different ideas, opinions, circumstances and world-views. The danger of the alternative was to risk believing that my views and opinions are right. There is no ‘correct’ or ‘right’ answer. There are many answers. So what’s the question?
What Do I Do Now?
That has been the question most often asked among the pronounced increase in calls from adult children of aging parents asking ‘what do I do now?’. The calls come when the adult children begin to see their parents slowing down, and they don’t know what to do.
The story is often told passionately, sometimes almost hysterically, as 50 years of family history, dynamics, relationships and problems are aired. And I ask questions. Have you talked to your Dad about your concerns? “No”. Do your folks have Advanced Directives? “I don’t know”. Is there a Health Care Proxy? “No, but my brother is Power of Attorney”. What do you think I can do for you? Silence. What do you want to happen? Silence.
After much probing, it’s clarified that 1) they want some relief / respite for Dad because he’s ‘exhausted’ from taking care of Mom. Mom is spending an increasing amount of time sleeping. She has no deficits in ADL’s; activities of daily living: feeding, bathing, toileting. However, she is no longer participating in any IADL’s; independent activities of daily living: cooking, cleaning, shopping, socializing, etc. And 2) they want to avoid a crisis.
The caller, and siblings, want relief and to avoid a crisis. The parents own their own home and have Basic Medicare. Their discretionary income is quite limited. Dad has had a triple by-pass. Mom has had several falls over the past several years. At least two falls required Emergency &/or Hospital care. After visiting, I can confirm that they’re each “in a slump”. Yes, Dad is feeling isolated and, prior to Mom’s getting out of bed, confirmed that he’s doing ‘everything’ and that he can hardly leave the house for waiting on Mom and doing chores. Mom admits to having just one big problem in her life. If she wasn’t in so much pain, physically, mentally, and emotionally, then everything would be fine. Other than that, she has everything planned for when Dad can longer “take care of the garden”. It was crystalline clear that there would be no discussion about declining abilities. “I don’t want to talk about that kind of stuff … because then…silence.”
OK. Relief is out. How about #2: Avoiding a Crisis
There are many things that can still be done to mitigate a crisis. But now I have to ask, a crisis for whom? At the risk of being in-your-face blunt, the end result will be the same. The thing is, so many of us want to know what the right ‘thing to do’ is, in such circumstances. Right now, Mom and Dad are getting along and still capable of making their own decisions, whether we agree with them or not. They’re grown up. They are resistant. Is that new? The family has never discussed future planning in any meaningful way and, now, they want to avoid a crisis. Whose crisis? I have a mental image of Mom & Dad in crisis mode when they’re told they have to do something differently because it’s for their own good. I could be wrong. Maybe they’ll be thrilled and relieved by the suggestion.
And I wait for the caller, who when asked what they would like to happen, responds “I’d like to heal old wounds.” Or something like that. But hey, we’re allowed to have our own intentions and hopes.
I’ve observed families go through this process kicking and screaming, even gnashing of teeth. And I’ve seen others go through gracefully. I think I finally understand why videos of kittens, puppies and all things funny crazy are so popular. They are fun, and a whole lot simpler and easier than dealing with ‘stuff’ like this. You know, and I know, that I’m a bit of a nutcase about future planning. I’m even more of a nutcase about present living, because I don’t know when Death will come and I do hope to be mindful through my last great adventure of this life.
So What Can We Do?
One answer is that there are, yes, many answers. No? Whatever happens, we will do our best. We will try to be generous, patient, and compassionate. And we will try to be even-tempered when things don’t go our way. We may feel frustrated, frightened, taken advantage of, and really PO’d at how stubborn some people can be. And we each have our unique situations. We’ll have to juggle competing needs, like taking care of our own children, or earning a living, or our own health and strength. Yet, we will still try to be generous, and patient, and compassionate. And as time goes on we may question if we’ve done enough, or if we’ve done ‘the right thing(s)’. There’s a Great Story in which the answer is “maybe yes, and/or, maybe no”, but this post is too long already.
“He was an incurable romantic,” the son writes, “intensely in love with life and the mysteries of the cosmos.” When he realized he had not much longer to enjoy the earthly scene, Otto Petterson said to his son: “What will sustain me in my last moments is an infinite curiosity as to what is to follow.”
We do the best we can.
P.S. We could use a bit more of ‘light-hearted banter’, if you ask me. Maybe I’ll be ready to tell the story of my recent Face surgery soon. You’re invited to visit our Facebook page, no R.S.V.P. required. It’s a repository of many fine, relevant, articles. I hope you like it. 🙂