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

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


  1. [hugs] Love you. Your mom is so lucky to have a daughter like you. Praying for you all.

  2. Susan, I love you and you and mom are in my prayers.


  3. Hey, Amy ~

    Thanks for your prayers, your kind words and your boundless love and hugs - this is the hardest thing I've ever had to do... and it's just beginning...

  4. Hey, Maria ~

    I am so touched you would stop in to comment - I cherish your love and prayers and already feel them surrounding me... <3

  5. Susan,
    We are, indeed, living parallel lives right now ... hospice has already prepared the "go gently into that good night" kit for my mother.
    My mom's COPD is taking her away day by day. Her oxygen is set at 7, I believe, and just transporting from her wheelchair to her wheelchair lift is exhausting to her.
    I know this is the summer I'll lose my mother. Dad died July of '07. I do not know what it will feel like to be an orphan; I am in no hurry to find out. I always thought I would be Duncan and Pat's daughter.
    What will it be like to no longer be someone's daughter?
    Is your father living?
    My thoughts are with you.

  6. Hey, Kate ~

    How lovely to hear from you - I've been worried, since you so rarely post to your wonderful blog anymore!

    I am so sorry to hear you are going through a similar situation - it's hard in so many ways. Next week will be busy, as I make so many phone calls, trying to figure this whole thing out - I know there are resources and support, and we're just trying to "circle the wagons" such that mom knows how loved and cared for she is, right up until...

    My father passed away almost 14 years ago, so I too will be an orphan - I've felt lucky to have mom this long. One of her friends/neighbors who is a nurse told me that she feels it will be June or July - we are trying to find the balance between hope and reality...

    Your thoughts and hugs are much appreciated - please know I send mine in your direction as well... and let's keep each other posted, okay?... <3

  7. I'm sorry I haven't been in touch. I was hoping that your recent absence from Star Maker was not bad news.

    The closest I have had to your present experience was when my wife's grandmother passed on. She needed prednisone towards the end too; it's nasty stuff that can alter the patient's emotions in unpleasant ways. I hope someone warned you about that.

    My heart goes out to you. If you need a friendly cyber-ear, please feel free to send me an e-mail; I will try to respond promptly.

  8. Susan--my prayers and intentions have been with you and will continue. This is hard; I know from 1st-hand experience. If there is anything I can do...including coming up there, just let me know. Every now & then, just stop, breathe and feel all the love everyone is sending will help. Love, Kate

  9. Hey, Darius ~

    Thank you *so* much for checking in - my Star Maker Machine "family" is important to me, and I've missed contributing, even if I had good reason...

    I appreciate your offer and your compassion - as my circle widens, my anxiety decreases... <3

  10. Hey, (other) Kate ~

    You *know* I feel your intentions streaming my way - I promise to follow your advice, and I feel blessed to have so much love and support during this transitional time in my/our life...

  11. susan

    Sorry to hear about your mom. All i can do is send you my love and wishes for taking good care of yourself. Stressful times and times when everyone else needs our care, means that we have to be more intent on keeping ourselves in a centered place. Remember you dont have to shoulder it all, share the burden, there is enough to go around.

    Please send your mom my best wishes and love. She is a spunky woman who has lived her life as she has wanted. She has three beautiful, well intended, caring, loving children and many grandchildren. I am sorry that her health has declined as it has.

    Know i am thinking of you during this time and always.

  12. Hey, sharon ~

    Oh, thank you for weighing in with such wisdom and concern - I was planning to go to exercise class this morning... but mom had a bad night and it looks as if I'll be staying here (I'll try to get out walking later while one of the neighbors visits)...

    I'm realizing more and more that, in addition to circling the wagons, we need to expand the support circle such that the responsibility is equally spread - maybe because I live far away, I think I need to make up for lost time while I'm here...

    I will most certainly pass on your best wishes and love to mom... and keep some for myself - I cherish our abiding friendship... <3

  13. Dear Susan - This is the most difficult time...there is no way but to go straight through. Sending you, your dear Mother and your siblings constant thoughts of strength and courage. And glad that a beautiful bubble of love encircles you all.


  14. Hey, Catherine ~

    Your thoughts of strength and courage are coming at the right time - just when I tell myself I can't do this anymore... I somehow manage to keep doing it. Straight through feels like a relief, after all the circuitous paths we've taken to get to this place - it could be days, weeks or months... but we're ready... <3

  15. To take care of others and to be taken care of by others. The best relationships enjoy this waxing and waning, ebbing and flowing. Whatever your mother is going through, she knows that your hands and heart are there. You are missed and loved and your family, especially your mother, are being prayed for. Love, Eileen

  16. Hey, Eileen ~

    I cannot begin to tell you how touched I am that you commented - it means much to hear from those on my home front... when I feel so removed (geographically and otherwise). It is such a crazy rollercoaster journey (your description is perfect) and I just want to do right by mom, in whatever time frame we're allowed - I've sensed her strong relief since my arrival, and I feel honored I can help with this transition...