Monday, June 1, 2009

Home (Karla Bonoff)

Below is the latest Connie Circle e-mail - I've added my two uncles/aunts, as well as friends from mom's old neighborhood (the circle widens)...


Sent: Tue, 2 Jun 2009 2:15 am
Subject: Connie Circle - 6/1/09 update

Hey, All -

It's been a few days since my last update - much to report... and I've added a few people to the distribution (welcome D/G D, A/M, Uncle A/J, Uncle F/Aunt J, A/G, B/J). Widening the circle is always a good thing - mom is lucky to have so many people who love her...

When I last wrote, mom had just signed up for hospice care - they were ready to send someone out Friday but, since we'd already scheduled to have D, G, A and M visit (thanks for a lovely afternoon, full of good food, good company and plenty of reminiscing!), we asked if we could postpone until Monday. They said they could actually send some of their weekend staff on Saturday, and we were thrilled - when we still hadn't heard from anyone by 3 p.m. Saturday, I gave a call...

Got their answering service, left message and someone called me back within 5 minutes - I explained the situation and she said they could send two people (a home health aide and a nurse) out that afternoon. I said we were fine waiting until Sunday or Monday - she insisted... and they came within a few hours, the former giving mom a bath and the latter checking her vital signs and chatting with her a bit.

This morning (Monday) was our first "official" day with them, and the phone rang numerous times as I heard from a different nurse, a different home health aide, a social worker and a spiritual caregiver - we made appointments this afternoon with the first three and asked the fourth to come on Wednesday instead (wow - impressive!)...

~ Tammy will be mom's nurse, coming twice a week, Monday or Tuesday... and again Thursday or Friday - we loved her immediately, as she answered so many of her questions about mom's prednisone dosage, her nasal crustiness, her swollen ankle and her constipation (sorry). One of my main concerns is when mom asks me to "tweak" (i.e., turn up her oxygen at certain times when she's having trouble... and then turn it back down when she's calmer) - Tammy said that was perfectly fine to do and should help alleviate some of mom's anxiety about having to get up to go to the bathroom, etc... which would go a long way toward reducing my worry as well...

A very cool thing is that Tammy's parents just happen to be the #2 importers of sea shells in the country... and we all know that mom's house is decorated with them from tip to toe, bow to stern - Tammy said she'd bring mom a present the next time she comes... :-)

~ Then Sandra, mom's social worker, arrived (she will come twice a month, unless we need her more often) - she basically evaluated our situation by asking lots of questions. Her main role is providing guidance, if needed, for funeral arrangements, caregiver hiring, legal issues, etc. - she is also there for emotional support, when talking to someone objective, rather than a family member, is what mom needs...

~ Erica will be mom's home health aide, coming every Monday, Wednesday and Friday - it was a good thing she was running late, because mom was already so wiped out from the first two visits. I allow mom to set the pace as to how much talking she wants to do - I can handle most of it, and she does what she's able. Erica will help mom with bathing (a bed bath seems to be the way to go), applying lotion, giving massages/manicures/pedicures, changing sheets, etc. - we were floored to find out the hospice program provides the adult underwear, wipes, deodorant, body wash and many other products.

We continue to be amazed with the program - these caregivers are not only knowledgeable and informative, but they are compassionate as well, always making eye contact with mom, and exhibiting in their conversational skills that this is a vocation/calling for them, rather than a job. We now have a prepared team of professionals surrounding mom, which reinforces the team we already had in place with family and neighbors - we're learning more each day, and establishing routines that can be flexible if need be.

Not sure if I said this in my last few updates... but Harriet, the admissions nurse, told mom she needs to compare her day to a prepaid phone card, in which she has a finite number of minutes each day - she can spend them any way she chooses but, once they're gone, they're gone. Better to conserve her energy for things only she can do (bathroom, etc.), and allow others to help elsewhere - it's been a learning experience for mom, as she's always been the caregiver and isn't used to accepting help. I'm also walking the fine line of encouraging her to letting me follow through on certain things (topical ointment, saline solution, etc.) which I know wear her out but are of value in the long run - I told mom tonight that I didn't want her to feel I was forcing her into anything but... there are so many things we *can't* control regarding her pulmonary fibrosis that it feels good to set goals in which we *can* make a difference...

Thanks so much to Mari for getting in touch with mom's cable provider and setting up an appointment to have wireless installed Wednesday morning - I've said before that Internet connection is spotty here (piggybacking onto a neighbor's network) and not only will I be able to get more done more quickly once she has wireless... but that also means Mari can come over more often and work from mom's house, giving me breaks...

Speaking of... we've arranged for that this Wednesday, as Mari and Julia will arrive a few minutes before 9 a.m. so I can go to exercise class with A and D - when I return, I'll shower and then head over to Mari's house (about 20 minutes away) with Julia, where I can spend the day as I choose (sleeping/reading/computer), returning later in the event for Chinese food night (a neighborhood routine I'm attempting to re-vitalize... :-)

We remain boundlessly grateful for everyone's phone calls, e-mails, book loans, prayers, support, love, etc. - it truly does take a village... and mom is so lucky hers transcends county/state lines...Love to you all - more in the next few days... <3>

Home by Karla Bonoff

BOOK: Hospice Care at Home: A Guide to Caring for Your Dying Loved One at Home by Starr Calo-oy, Bob Calo-oy

POEM: Have You Ever Tried to Enter the Long Black Branches? by Mary Oliver

Have you ever tried to enter the long black branches
of other lives --
tried to imagine what the crisp fringes, full of honey,
from the branches of the young locust trees, in early morning,
feel like?

Do you think this world was only an entertainment for you?

Never to enter the sea and notice how the water divides
with perfect courtesy, to let you in!
Never to lie down on the grass, as though you were the grass!
Never to leap to the air as you open your wings over
the dark acorn of your heart!

No wonder we hear, in your mournful voice, the complaint
that something is missing from your life!

Who can open the door who does not reach for the latch?
Who can travel the miles who does not put one foot
in front of the other, all attentive to what presents itself
Who will behold the inner chamber who has not observed
with admiration, even with rapture, the outer stone?

Well, there is time left --
fields everywhere invite you into them.

And who will care, who will chide you if you wander away
from wherever you are, to look for your soul?

Quickly, then, get up, put on your coat, leave your desk!

To put one's foot into the door of the grass, which is
the mystery, which is death as well as life, and
not be afraid!

To set one's foot in the door of death, and be overcome
with amazement!

To sit down in front of the weeds, and imagine
god the ten-fingered, sailing out of his house of straw,
nodding this way and that way, to the flowers of the
present hour,
to the song falling out of the mockingbird's pink mouth,
to the tippets of the honeysuckle, that have opened
in the night
To sit down, like a weed among weeds, and rustle in the wind!

Listen, are you breathing just a little, and calling it a life?
While the soul, after all, is only a window,
and the opening of the window no more difficult
than the wakening from a little sleep.

Only last week I went out among the thorns and said
to the wild roses:
deny me not,
but suffer my devotion.
Then, all afternoon, I sat among them.
I even heard a curl or tow of music, damp and rouge red,
hurrying from their stubby buds, from their delicate watery bodies.

For how long will you continue to listen to those dark shouters,
caution and prudence?
Fall in! Fall in!

A woman standing in the weeds.
A small boat flounders in the deep waves, and what's coming next
is coming with its own heave and grace.

Meanwhile, once in a while, I have chanced, among the quick things,
upon the immutable.
What more could one ask?

And I would touch the faces of the daises,
and I would bow down
to think about it.

That was then, which hasn't ended yet.

Now the sun begins to swing down. Under the peach-light,
I cross the fields and the dunes,
I follow the ocean's edge.
I climb, I backtrack. I float.
I ramble my way home.

QUOTE: "Every parting is a form of death, as every reunion is a type of heaven." ~ Tryon Edwards


  1. Continuing to send good energy and much love. Hospice is fantastic, so glad they have been able to provide so much assistance and support!

  2. Hey, M ~

    Each day with the hospice caregivers is better than the one before (if that's at all possible) - our relief and comfort level are palpable... especially from two weeks ago when I arrived (anxiety level off the charts)...

    Your energy and love are most definitely felt across the miles, my dear friend - thanks for the never-ending lifeline... <3

  3. Susan et al....

    i am pleased that mom got hooked up with skilled caring professionals....i ask you honor your positive experience by giving something back. Social workers are in the fabric of our schools, state and city centers working with abused and neglected kids, in prisons and in detention centers, in the Y and after school programs and in hospitals and yes, hospices. They run groups, serve the underserved and even are community organizers.
    Social workers are one of the least paid professionals ( maybe because many were women), though they play a vital role in helping society..
    I ask that you call or write your senator or congress person and advocate for the Higher Education Bill that has an amendment for Loan Forgiveness for Social Workers. This bill sets time limits where workers will have prorated loan forgiveness, the more service time, the more the loan gets paid off.
    Social work needs good caring workers who deserve to have the same benefits of other service providers..
    So please honor mom's worker by supporting loan forgiveness

  4. Hey, sharon ~

    Thanks so much for your comprehensive and informed commentary regarding social workers - I know you speak from experience... and are a true credit to the profession... <3