Wednesday, May 03, 2006


She's going home. As her body is consumed by cancer, weight loss, advanced AIDS, and debilitating illness, her only desire is to return to Puerto Rico. With the cancer treatment done and no further hope of stemming the tide of rapidly reproducing cells to any helpful degree, there is nothing more to do but look for comfort, succor, spiritual nurturance, and the respite of the family's warm embrace.

Laying on her bed in a slowly emptying apartment---she's selling everything she owns in preparation for the journey---she looks more and more wasted and wan each time I visit. Although the visiting nurses come twice a day, I'm shocked that they haven't noticed the reddened areas on the iliac crests, a sure sign that skin breakdown and bed-sores are on the way without intervention. I also notice that the inside bony prominences of the knees are very red--she is laying on her side with knees together almost all day and night. I instruct her to put a pillow or folded towel between her knees at all times when in bed. I'm disappointed the VNA didn't catch these subtle but crucial changes.

She shares that she hasn't taken her antiretrovirals (the meds used to control HIV) for a week because she vomits whatever she puts in her stomach. I plan to order meds for these symptoms within the hour after a quick call to my NP colleague. We speak of other symptoms, I take notes, and the HIV case manager who I brought along probes more deeply for answers which I think may be more forthcoming in the presence of this other compassionate professional that she has known since first arriving here.

While she doesn't speak of depression per se, this is a spiritual crisis of huge proportions, and it is clear that faith and the power of the mind are hard at work. This individual may have only completed the fourth grade, but there is a depth of soul and spiritual wisdom that far outweighs any intellectual capacity which might be lacking.

We discuss more concrete issues and plans, medications, symptoms, egg-crate mattresses, bed-sores, diabetes, and the need for Ensure and vitamins. We make some decisions, look forward to some changes which may alleviate some discomfort, and prepare for a day in the near future when she will leave this lonely apartment behind and return to her hometown. The sirens, the jackhammers of the construction crews, the smell of exhaust through the open windows, the long winters, they will all be a thing of the past, a figment of memory. She will stay with her sister, her brother and father down the street, cousins and other extended family nearby. Perhaps these five years in New England will then seem like a dream, an extended journey which perhaps occurred on some other plane of existence. Perhaps when she hears those familiar tropical sounds---the birds, frogs, and insects of her beloved island---and smells the soil, air, ocean breeze and rich home cooking---it will be like returning to the womb, to the culture and land which cradled her from birth to adulthood.

I regret not setting more services in place sooner, but each week I add yet something more in order to assuage suffering or alleviate symptoms. Since she is too weak to go to the doctor lately, it feels like I'm running the show, bringing reports to the primary physician after each of my home visits, making recommendations, and getting a green light on most every suggestion I make. This is where my role is crucial. This is also where the stakes are higher and my errors of judgement or lack of action could have dire consequences.

My goal is to keep her healthy enough to make the trip, leave this odd New England world behind, and melt back into the comfort and familiarity of home and family. Gods, goddesses and angels of comfort and healing whose very existence I often question, bless these ensuing weeks and allow safe passage for this dear soul, and guide me well in my actions. If home is where the heart is, then bring this child where her heart longs to be.


Shig said...

Having a good death is, in some ways, more important than a good birth. So many people think that material poverty also means poverty of emotion or poverty of spirit. I hope she makes it home.

mary said...

Spiritual capacity is not dependent on intellectual capacity, as you say. Aside from your wonderful writing, this post shows how valuable a nursing degree is to the practice of case management/care coordination. How many case managers see both red knees AND social-psychological deficits and address both? You have a multi-faceted role!

Keep your own spiritual stress in mind, too, Keith!


Sally said...

Gods, goddess and angels, or answered prayers, whatever we want to call them, are always around, just out of sight, waiting to be called in.
Combined with a your caring multi-faceted professional skills, your patients/clients are blessed.
Take care Keith.