A major update to follow later today or, more likely tomorrow - we were told a nurse/home health aide/caregiver would be coming today so I've waited to discuss yesterday's happenings...
In the meantime, I've been thinking how much caregiving for mom this past week and a half reminds me of the early stages of motherhood - I remember back to those days when my life revolved around someone else and how I needed to approach it with joy rather than resentment in order to maximize action and minimize frustration...
My day now consists of waking up about 8... and listening out for mom to stir (during which time I turn off the front porch light, unlock the front door, bring in the newspaper, unlock and open the back door and make myself a cup of chai) - I sometimes stand in her doorway to see if she's awake... although, when she does wake, she usually turns on the TV (The Today Show) to get herself ready to start her day.
At that point, I start a pot of coffee (she was drinking hot tea before I got here because it was easier) and go back to the bedroom to supervise her first walker-assisted trip of the day to the bathroom - mom spends as much time in there as she needs, slowly changing from her nightgown into the knee-length cotton T-shirts she likes to wear during the day (after I've applied the topical antibiotic to the lesions on her back and upper arms).
Again, when she's ready, I follow her walker-assisted trip into the living room, where mom settles herself into the left-side corner of the couch, remaining most of the day, with the TV on... at full volume - I then make her breakfast (an English muffin with butter and apricot preserves or a bowl of oatmeal or two blueberry waffles with butter and syrup), put it on a tray and bring it to her. I might do an e-mail check at that time, but usually I make up her bed and mine, as well as anything else that might need attending, and sit and chat with her a few minutes to see how she's feeling - when she's finished eating, I take the tray into the kitchen, clean up, make sure the distilled water in the humidifier of the oxygen machine is properly filled and check the flow gauge...
By that time, mom has laid her head down on the arm of the couch for a nap - I might get a few e-mails answered, but I'm constantly prepared for an interruption, whether by phone, front door or her waking. We chat off and on during the morning as I do laundry, prepare our To Do list and generally make myself accessible to follow through however she needs me (find specific paperwork, bring her summer pocketbook to switch over to, help sort through her medication, etc.) - we talk about what she wants for lunch and dinner...
Lunch can be a sandwich or salad, always with fruit since she remains constipated - she will rest again after eating. When she sleeps, she moans... and it scares me - I might try to work at the computer again, but I can never really concentrate because I'm worried and therefore constantly attentive to any slight change in breathing. I try to get a shower in then, but it's not always possible - I recall, when my children were infants, that I would put them in their rocker seat and set them on the bathroom floor so I could see them, taking the quickest shower in history and talking to them throughout. I wish I could do that with mom but instead have to leave her on the couch - when the water's running, I hallucinate that I hear her calling me, only to find that, after I've rushed through my hygiene process, she's still asleep, or at least perfectly fine...
At this point, I might run an errand to the grocery store or for some other necessity, making sure one of the neighbors knows I'm going... and that mom has the phone right next to her - I'm never gone more than an hour, and usually less than that. My sister and brother always call during the course of the day, as well as various friends and neighbors - it wears mom out to chat, but it's wonderful to know so many people are thinking of her...
Afternoons roll over into evenings and sometimes we do "Happy Hour"... after which I fix and serve dinner, usually about 7 p.m. - we watch Wheel of Fortune and then Jeopardy... and then mom goes on a three-hour jag of crime drama shows (continuing at full volume). NCIS/CSI:NameThatCity/Criminal Minds/Forensic Files/The Mentalist/Without a Trace all look alike to me... but she loves them - I'm over the blood and guts and gore, oh my!... and sometimes miss Jon & Kate (without the recent brouhaha), Antiques Roadshow and InTreatment...
Mom will usually watch the first 30 minutes of Murder, She Wrote and then head back to bed - I help her back to the bathroom and then switch on the fan and light in her bedroom, as well as turn back her covers and put her water glass on the bedside table. I wait for her to come in, kiss her goodnight (with emotion) and head back into the living room to get whatever I can get done at the computer (fingers crossed the Internet connection prevails) or some reading until exhaustion/sleepiness take over - I've found that if I stay up late, I pay for it the next day...
The worst part is the hours between 2 and 6 a.m., when it's still dark and I can hear mom breathing and moaning - then sometimes she gets quiet... and I sneak in there to make sure she's okay (remember those middle of the night visits standing by our infant's crib to make sure they're still alive?). Sometimes she gets up in the middle of the night to go to the bathroom... which wakes me (I'm back in parent mode these days) - I yell out that I'm there if she needs me... and sometimes she does and sometimes she doesn't...
Before we know it, it's 8 a.m. again... and time to wash/rinse/repeat - I'm hanging in there... and some days are easier than others...
P.S. Speaking of children... my dear daughter Sarah just made arrangements to fly up next Friday to spend a long weekend with mom (my kids call her Mimi) - when I told mom, she cried with joy...
SONG: Who Have You Been (and who are you now) by Carrie Newcomer (scroll down to page 14)
BOOK: Unwrapping the Sandwich Generation: Life Vignettes about Seniors & Their Adult Boomer Children by Susan Cunningham
POEM: Sometimes by David Whyte
Sometimes
if you move carefully
through the forest
breathing
like the ones
in the old stories
who could cross
a shimmering bed of dry leaves
without a sound,
you come
to a place
whose only task
is to trouble you
with tiny
but frightening requests
conceived out of nowhere
but in this place
beginning to lead everywhere.
Requests to stop what
you are doing right now,
and to stop what you
are becoming
while you do it,
questions
that can make
or unmake
a life,
questions
that have patiently
waited for you,
questions
that have no right
to go away.
QUOTE: "In youth the days are short and the years are long; in old age the years are short and the days long." ~ Nikita Ivanovich Panin
Saturday, May 30, 2009
Who Have You Been (and who are you now) (Carrie Newcomer)
Thursday, May 28, 2009
Peace of Mind (Loggins & Messina)
Sent: Fri, 29 May 2009 2:01 am
Hey, All -
To quote my favorite singer-songwriter Dar Williams, "I lived a whole life in one night" - where to begin?
~ Hi-Tech (the oxygen company) called back this morning and it seems that the 40 ft. tubing does not come in high flow - we decided to make the trade-off of limited mobility for increased oxygen and mom is okay with it (more on this further down)...
~ I got her to the doctor yesterday afternoon for her lesions and she was immediately diagnosed with neurodermatitis, very common in people of her age and circumstances -the doctor prescribed a topical ointment to apply twice a day for the next 10 days and we are all so relieved to know what it is and how to make it better...
~ Two guys from the funeral home/cemetery came out yesterday to talk to mom about not only her arrangements, but the interment of Marie's cremains (who passed away last June) - B said he wanted to be with both his mothers (mom and Marie) so mom decided on three side-by-side niches in the Catholic section. Her words: "signed, sealed, delivered"... :-)
~ With my brother's help, I bought the screen door today, only to find out we really needed a storm door - thanks again to B, R's husband, who took me back up there tonight to make the exchange... and he will install tomorrow or over the weekend...
~ The newspaper was delivered to the front door today, but not hanging on the doorknob - we'll give it another few days before we call back..
~ Okay... two women from Crossroads Hospice came this afternoon, Connie the supervisor and Harriet, the caseworker/nurse - they were amazingly informative and experienced and compassionate and, after only a short while, it was determined that now was indeed a good time for mom to begin the program. M and B (my sister and brother) were here as well, and everyone could tell this was a mutual decision, for mom's benefit - peace of mind... priceless... not to mention the fact that Medicare covers everything. They will send a wheelchair, shower chair and bedside commode out tomorrow and a visiting nurse will come Saturday (she would have come tomorrow as well, except for the fact we have company mid-day and wanted to concentrate on them) - there will be a team of nurses, caregivers, social workers, spiritual counselors, etc. not to mention all of mom's oxygen and medications will be taken care of through Crossroads now (we are especially reassured about the switch in oxygen providers)...
~ After reading lots about hospice programs, I realized someone has to step up to be primary caregiver and that role seems to fall naturally to me - I've said from the beginning that my unemployment was a blessing in disguise. I plan to stay up here indefinitely to oversee the progression, as well as take advantage of the time with mom - M and B will come over when they're able (considering they're both working full-time jobs) and M mentioned getting wireless at mom's so she can work from there (since Internet has been so unreliable here). Everyone has promised I will get breaks, which I will need - fortunately, everything I need to accomplish in the next few months can be done from here, and we will take one joyful, comfortable, peace-filled day at a time (it's now all about abundance rather than deprivation)...
I'm pretty talked/typed out... but so glad to know the responsibility will now be umbrella-ed under one resource... and we can concentrate on spending quality time together - much love to all as we continue on this journey together... <3
BOOK: No Death, No Fear by Thich Nhat Hanh
POEM: To Look at Any Thing by John Moffitt
QUOTE: "The world that was not mine yesterday now lies spread out at my feet, a splendor. I seem, in the middle of the night, to have returned to the world of apples, the orchards of Heaven. Perhaps I should take my problems to a shrink, or perhaps I should enjoy the apples that I have, streaked with color like the evening sky." ~ John Cheever
Tuesday, May 26, 2009
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...
~~~~~~~~~~~~~~~~~~~~~~~~~~~
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
Monday, May 25, 2009
Hey, Ho (Dave Carter)
BOOK: Who's Calling the Shots?: How to Respond Effectively to Children's Fascination with War Play, War Toys and Violent TV by Nancy Carlsson-Paige, Diane E. Levin
POEM: Memorial Day by Steve Kowit
QUOTE: "Perform, then, this one act of remembrance before this Day passes - Remember there is an army of defense and advance that never dies and never surrenders, but is increasingly recruited from the eternal sources of the American spirit and from the generations of American youth." ~ W.J. Cameron
Friday, May 22, 2009
Stand By Me (Ben E. King)
I am back at my mother's house north of Atlanta, arriving this past Tuesday and intending to stay for two weeks - she has declined substantially (pulmonary fibrosis) since I was last here in late-January...
Internet has been spotty as well as slow and frankly, I am exhausted - the physical I don't mind as it is a joy to help mom in whatever capacity I'm able (make meals, do chores and just generally be the step-n-fetch-it girl by replenishing her ice water, bringing her items from another room of the house, running errands). The emotional drain is another story - it's hard for one's brain to process the inevitable, even if that's where the path is ultimately leading...
Yesterday was most difficult, as I drove mom to her doctor's appointment and we received some honest answers to some hard questions - mom asked about a lung transplant and there is a cut-off age of 65 (mom will be 79 in September). She also asked how long she had and the doctor honestly told her she seems to be at the beginning of the final stage of her illness - right now everything is designed to keep her comfortable. If mom thinks she feels better from the Prednisone, then the doctor was fine with increasing her dosage - she also gave mom "permission" to turn up the level of her oxygen (which she's on 24/7), but that's a terrifying thought for mom, since it's already at 9 (and 10 is the highest)...
Mom told me she's not afraid of dying... but she does fear not knowing what comes next... and whether or not each struggle for breath will be her last - the doctor assured her that, when the time comes, mom will know and we will call in hospice, where medications will be administered to calm her breathing and ease her anxiety. It was always assumed that, as it got closer, mom would move in with my sister - now I'm thinking I will extend my stay, or leave and come back, in order to ensure she is able to transition from her own house. My brother and sister are coming over Monday for a Memorial Day family gathering... and we will have an in-depth, brainstorming conversation at that time - we are retaining hope... but we are definitely at a crossroads. I just ordered (overnighted) the book I reference below... and will receive it tomorrow - I want to do my homework and be as prepared as I possibly can...
As soon as I finish writing this, I will send out the link in an e-mail to various friends who are holding their own vigil for mom... and for me... and for my family - thanks to all for continued thoughts, prayers and purple candles...
P.S. I am trying to take care of myself along the way as well - went to a seniors aerobics class with one of mom's neighbors this morning... which was equally humbling and inspiring (I want to be Frances, 88, when I grow up... still moving, smiling and living life to the fullest... :-)
P.P.S. Thanks to J for the poem...
SONG: Stand By Me By Ben E. King
BOOK: The Needs of the Dying: A Guide for Bringing Hope, Comfort, and Love to Life's Final Chapter by David Kessler
POEM: Invisible Work by Alison Luterman
Because no one could ever praise me enough,
because I don't mean these poems only
but the unseen
unbelievable effort it takes to live
the life that goes on between them,
I think all the time about invisible work
About the young mother on Welfare
I interviewed years ago,who said, "It's hard.
You bring him to the park,
run rings around yourself keeping him safe,
cut hot dogs into bite-sized pieces for dinner,
and there's no one
to say what a good job you're doing,
how you were patient and loving
for the thousandth time even though you had a headache."
And I, who am used to feeling sorry for myself
because I am lonely,
when all the while,
as the Chippewa poem says, I am being carried
by great winds across the sky,
thought of the invisible work that stitches up the world day and night
the slow, unglamorous work of healing,
the way worms in the garden
tunnel ceaselessly so the earth can breathe
and bees ransack this world into being,
while owls and poets stalk shadows,
our loneliest labors under the moon.
There are mothers
for everything, and the sea
is a mother too
whispering and whispering to us
long after we have stopped listening.
I stopped and let myself lean
a moment, against the blue
shoulder of the air. The work
of my heart
is the work of the world's heart.
There is no other art.
QUOTE(S): "My mother is a poem I'll never be able to write, though everything I write is a poem to my mother." ~ Sharon Doubiago
"A mother understands what a child does not say." ~ Jewish proverb
Friday, May 15, 2009
This Bouquet (Ani DiFranco)
So... what has happened here in the last year?
We went on an amazing family vacation in early-August, I was laid off mid-October and I was asked to contribute to Star Maker Machine about the same time (which went a long way toward saving my sanity) - I find myself blogging less but enjoying life more. My Word of the Year was Health - I'm not there yet... but each day is a conscious effort to move toward...
My mom's health continues to decline and I'm actually leaving this Tuesday to fly up to the Atlanta area to spend two weeks with her - one of my children (middle child R) moved out... right before another (youngest child E) came home from college for the summer. We had a family dinner last night (we aim for them weekly) and it was a joy - we're hoping all five of us can get away on vacation sometime in the next few months to re-create the Ft. Myers Beach memories of our past...
I cherish my friends: the forever (I'm still recovering from our four-hour lunch yesterday), the fairly-new (bring on the Day Ones!), the geographically-distant ("balloon man lives in it too") and everyone in between - to use a Cruise-ism: you complete me (ha... :-)
Every day continues to be a growth opportunity, as I find my balance, set my boundaries and re-frame my priorities - here's/cheers to another year of music and magic and mayhem, oh my!
SONG: This Bouquet by Ani DiFranco
BOOK: The Best of Inquiring Mind: 25 Years of Dharma, Drama, and Uncommon Insight by Barbara Gates, Wes Nisker (Editors)
POEM: What Have I Learned by Gary Snyder
QUOTE: "Work hard to improve your mind and body. Nourish your spirit. Do the things you fear." ~ Robin S. Sharma
Sunday, May 10, 2009
Dancing with My Mother (Rachel Bissex)
The motherhood festivities have historically been in spring, the season of fertility. In ancient Egypt, there were celebrations to honor Isis, the loving mother-goddess, who is often shown in Egyptian art with the baby Horus at her breast, much like Mary and Jesus in later Christian iconography. The cult of the great mother-goddess Cybele began in Turkey and soon moved to Greece and Rome, and she was worshipped in some form for more than a thousand years. Her priestesses led wild celebrations, full of drinking, dancing, music, and all kinds of debauchery.
BOOK: Undress Your Stress by Lois Levy
POEM: For A Mother-to-Be by John O'Donohue
QUOTE: "What a mother sings to the cradle goes all the way to the coffin." ~ Henry Ward Beecher
Thursday, May 7, 2009
Smiling (Richard Shindell)
POEM: by Jane Gentry - On a Perfect Day
... I eat an artichoke in front
QUOTE: "There are three ingredients to the good life: learning, earning, and yearning." ~ Christopher Morley
Tuesday, May 5, 2009
Que Hago Ahora? (Silvio Rodriguez)
Today is Cinco de Mayo, which celebrates Mexico's defeat of French invaders at the Battle of Puebla in 1862. Cinco de Mayo has actually become a bigger holiday in the United States than in Mexico, where it is mostly a regional holiday in Puebla. There are large Cinco de Mayo celebrations - with parades, music, and food - in Los Angeles, Denver, Portland, St. Paul, and other cities across the country.
In the meantime, I'm trying to operate from a place of love - it's grounding, fueling and ultimately, despite the cliche, all you need...
BOOK: Cinco de Mayo: What Is Everybody Celebrating? by Donald W. Miles
POEM: Begin by Rumi
QUOTE: "Every beginning is a consequence - every beginning ends some thing." ~ Paul Valery
Sunday, May 3, 2009
How Can I Keep from Singing? (Robert Wadsworth Lowry)
As the subject of three new books and an updated biography, Seeger says, "I've had too much publicity," even as he talks by phone to a reporter.
Seattle, WA
BOOK: The Hudson: An Illustrated Guide to the Living River by Stephen P. Stanne, Roger G. Panetta, Brian E. Forist
POEM: Music by Anne Porter
QUOTE(S): "As long as we live, there is never enough singing." ~ Martin Luther
"The total person sings not just the vocal chords." ~ Esther Broner
"It was his nature to blossom into song, as it is a tree's to leaf itself in April." ~ Alexander Smith
"Faith and joy are the ascensive forces of song." ~ Edmund Clarence Stedman
"Life is a song. Love is the music." ~ Author Unknown
Saturday, May 2, 2009
Balloon Man (Richard Shindell)
POEM: Chansons Innocentes: I by e. e. cummings
in Just-
spring when the world is mud-
luscious the little
lame balloonman
whistles far and wee
and eddieandbill come
running from marbles and
piracies and it's
spring
when the world is puddle-wonderful
the queer
old balloonman whistles
far and wee
and bettyandisbel come dancing
from hop-scotch and jump-rope and
it's
spring
and
the
goat-footed
balloonMan whistles
far
and
wee
QUOTE: "My definition [of a philosopher] is of a man up in a balloon, with his family and friends holding the ropes which confine him to earth and trying to haul him down." ~ Louisa May Alcott
