Lungs (Townes Van Zandt)

Below is a note I just wrote to The Connie Circle, an e-mail distribution I've spoken of before (consisting of me, my sister, my daughter, and three of Mom's neighbors/friends), which I set up to keep us all in the loop after I returned last January - I also added my husband and two sons to this one, so they can be apprised of information/progress...

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Sent: Tue, 26 May 2009 2:32 pm
Subject: Connie Circle update - 5/26/09 - looooong (sorry!)...

Hey, All (and I've added C, R and E to our loop) -

As everyone knows, I've been here since mid-Tuesday (5/19)... so today makes one week I've had to observe 24/7 what's happening with mom - crazy enough, when I made my reservations, it was just supposed to be a "routine" visit... but it didn't take long to realize my timing was intuitively perfect...

Mom has obviously declined since I last saw her late-January... but I've even noticed a downturn since my arrival - you all know it is terrifying to watch her struggle for breath, especially when motivating to the bathroom or bedroom... but even sometimes just sitting still. She needs more oxygen, which seems to be less effective - no wonder she doesn't want to leave the comfort zone of her corner of the couch...

~ One thing I feel *very* good about is dealing with H-T (the oxygen company) this morning - they had been promising her extra cannulas (the high-flow breathing tubing) for weeks and still hadn't delivered. I left a message with their answering service over the weekend to escalate... and then called the office itself this morning - spoke with A, who was extremely helpful, and sent back the two techs who were here Friday...

Long story short (I'm trying!): on A's recommendation, they switched out the longer (40 ft.) thinner line for the shorter (25 ft.) thicker (high flow) line - we had problems over the weekend, and mom asked me to turn up her oxygen. I had the dial *as far as it would go* and it was still only registering 9 (very scary) rather than the 10 it is supposed to go up to - now, the machine is accurately reflecting her oxygen flow and I/we feel 9 is a *true* 9 (whew)...

Also, mom told me that someone (she doesn't recall who) told her that the cannula and the humidifier should be changed out every *month* - as I questioned H-T, all are saying they should be changed out every *week*. Of course that's going to make a difference, since her nasal connection gets clogged up with mucus/blood/etc. - we will now make a point to change out both each Monday...

Also, since Mom had a problem with the portable tanks when we went out for R's birthday (they only go up to 6), she asked me to ask A if they could just take those away, as well as remove the Helios portable tank we used to fill them. A said that big tank can be used as a back-up in case of a power outage (who knew?!?)... and they not only moved it into the futon room, but equipped it with a 25 ft. high flow line, a humidifier and a cannula such that, should she lose power, all she (or someone) has to do is make it to that room, put on that cannula and turn it up to 10 (it jumps from 8 to 10, skipping over 9)...

This has all gone a long way toward giving mom (and me) peace of mind regarding her oxygen, which makes her breathe easier (literally and metaphorically) - whew...

~ Her ankles started swelling yesterday afternoon when everyone was here, because she was sitting up more than usual (with her feet on the ground) - she took one of her Fluorsomething? (Lasix substitute) pills last night and, after calling Dr. G's (kidney doctor) office, again this morning, making sure to eat some potassium after (as per instructions)...

~ After her difficulties yesterday, I remembered she had 3 Ventolin inhalers (1 in her medicine tray and 2 in the cabinet), which she had told me her doctor said she didn't need anymore - I brought one to her in the bathroom and a few puffs actually helped her make it back to the couch less winded. So... I've stationed them throughout the house (next to the couch, in the bathroom drawer, next to her bed), which she can use 4 times a day as an assistance/auxiliary...

~ R had bought mom some saline spray when I was here back in January, and she really hasn't been using it - so... we are now on a track of trying to use it a few times a day to flush/irrigate/moisturize her nasal passages (very helpful)...

~ I also *slathered* her legs with Eucerin lotion I bought at Publix - they were so dry, and just soaked up the moisture (and I'll continue to do it daily or as needed)...

~ She is *loving* the Depends, which I had suggested to her the other day and R continued the discussion and then picked them up while I was at Mari's (thanks, R!) - it also lessens anxiety about accidents, etc.

~ I tried calling Dr. E's (her pulmonologist) office to start proceedings for a home hospice analysis, which just means we see what they have to offer but don't necessarily have to start anything right now - it also doesn't necessarily mean 24- or 48-hours, but can extend for months. I stayed up until 4 a.m. reading (thanks, C, for the great books from Legacy Link!) and everything indicates (which we knew) sooner rather than later - they offer so many services/resources and I personally feel it's time. They were out to lunch and, given all the phone calls/mom-attending in the last hour and a half, I wanted to finish this e-mail and then give them a call back - at that point, it sounds as if they will send someone out to determine her needs/status (more peace of mind, right?)...

~ Can't say enough to all (A, M, S and B so far today) about your check-in phone calls - she treasures hearing from you... <3

I am very concerned (as I know we all are) and am attempting to stay calm... but inside I feel helpless and panicked (as I'm sure everyone has been feeling all these many months) - I know our goal is to "make her comfortable", not in a "sounds like the end" way that freaks B out... but in a "making the most of her days" sense...

It's all about intuition, abundance, self-empowerment, honesty, knowledge and, most importantly, love - we're moving forward...

SONG: Lungs by Townes Van Zandt

BOOK: The Official Patient's Sourcebook on Idiopathic Pulmonary Fibrosis by James N. Parker

POEM: That Lives in Us by Rumi

If you put your hands on this oar with me,
they will never harm another, and they will come to find
they hold everything you want.

If you put your hands on this oar with me, they would no longer
lift anything to your
mouth that might wound your precious land -
that sacred earth that is your body.

If you put your soul against this oar with me,
the power that made the universe will enter your sinew
from a source not outside your limbs, but from a holy realm
that lives in us.

Exuberant is existence, time a husk.
When the moment cracks open, ecstasy leaps out and devours
space;
love goes mad with the blessings, like my words give.

Why lay yourself on the torturer's rack of the past and the future?
The mind that tries to shape tomorrow beyond its capacities
will find no rest.

Be kind to yourself, dear - to our innocent follies.
Forget any sounds or touch you knew that did not help you dance.
You will come to see that all evolves us.

QUOTE: "Inhale, and God approaches you. Hold the inhalation, and God remains with you. Exhale, and you approach God. Hold the exhalation, and surrender to God." ~ Krishnamacharya