This poem is inspired by the struggles of compassionate children, especially daughters (of which I am one) who care for others who live until they die with a terminal illness such as Alzheimer’s disease and other forms of dementia.
I wrote the poem, but it doesn’t belong to me. It’s the collective voice of grieving millions. It belongs to all of us.
Each word is dedicated to every care partner who is torn to pieces, and in particular to Renee James and her mother Ella Fae James (January 19, 1930 – June 25, 2015) who are pictured at the top of this post.
a daughter’s prayer to god
a daughter’s prayer to god
by punkie
dear god
please take
my mother
now and
never
i can’t bear to see her
suffer anymore
nor can I bear
to see her
go
mothers and daughters
are sometimes
swallowed up
by life
god
we push hard and
then we pull,
trying
to fight
our way
to détente
then sometimes, god
dis-ease finds us
first and
makes us
blind, unaware
it steals the
things we
hold dear:
thoughts
actions
words
deeds
and dignity
please tell me
what happened
to dignity
god
is it stuffed in your
back pocket like an old
grocery list with
a nameless
phone number
scribbled on the back?
is it what i hear
a lonely elder
choking on
unseen in
over there in
go away god
if you can’t
keep track
of the notes
or the glory in the
everlasting corners of
your kingdom
come
no wait!
forgive me father
for I have
sinned
take her now
all these bits and pieces
and fragments of
your daughter
who was once
my mother
pluck her quick
from this drug-
induced
trance
breathe her back to life
on the other side
let her sing and dance
with the angels
instead of
me
free her spirit from
the tangled mind
the breaking body
the unholy care
that imprison
her now
then again,
bide your time:
a sedated slumber
may be better
than a
final resting
place where
I cannot see
her face or
hold her hand
how can her life
end as mine began
with dirty diapers
tentative steps
gurgles
drooling and
the search for
unknown words
and meaning?
don’t take her now,
god,
don’t.
take her.
i will miss her
too much when
she goes.
leave her
hand in mine
we can shuffle
a little further down
hell’s road to
heaven
we can play a duet
or two, or three
or more
i can read her stories
touch her cheek
watch over her
as she did me
when I was
her baby
and she
was not
mine
let her stay with me
a little longer
god
before you
take her home
where she longs
to go
and when you
take her
god,
don’t take
all of her.
don’t take everything.
leave a piece
of her within reach
to accompany me
as I have
her
take her now god
but don’t take
her ever.
i will
miss
her
so
© Susan Macaulay 2016. I invite you to share the links widely, but please do not reprint or reblog or copy and paste my poems into other social media without my permission. Thank you.
My Alzheimer's Story 
I’ve thought these same thoughts about dad
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😦 it’s so hard to be so conflicted… my heart is with you ❤
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Reading, silently weeping. Seeing what the road ahead holds for me and my mom.
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Oh Heidi, I’m so sorry 😦
There may also be healing, tenderness and joy, savour it wherever you find it. But surely it is not an easy row to hoe…
❤
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A Son’s prayer too 😥 I know how you feel, all too well. You have put into words, what I have not been able to… What I’ve felt guilty for feeling…
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Yeah, a caregiver’s prayer (daughter, son, grandchild, spouse…).
You don’t have to feel guilty, although I understand how you do – it’s hard not to. It’s just all so heartbreaking.
On the plus side, it’s also all part of the human experience and we are lucky to be able to feel. I hope you have also had these kinds of emotions:
Thanks for reading and for your honest and heartfelt words. Sending healing thoughts your way ❤
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I’m praying with you too.
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Thanks Alison ❤
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Thank you Susan. My father is in the end stages of lewy body dementia. Thank you for expressing out loud exactly what i feel on the inside. Although the tears ran because it was so real, it felt good to know i’m not alone, and that someone else understands. My father is my mentor, my hero. I can’t bear to see him like this, but can’t imagine him not being here. Torn….
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You are definitely not alone Vivian ❤ ❤ ❤
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As hard as it is, a part of me is thankful that I get to be the one to care for my dad. Everyone else in my family has already let go of their relationship with him once he no longer knew them. I’m thankful that I get to share this time with him, throughout all of the bad, it’s brought us closer. When its all over, I will have peace that i was there for him, and know that he would be proud and thankful.
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Yes, I feel the same way Vivian ❤
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Susan – how poignant and clear. Kept thinking how I can’t wait to click and send to you – right up to the end where I found your name as poet!
Thanks so much for this…will share it with others
Carole
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Thanks Carole, I’m so sorry I haven’t been at church lately, but I’m worshiping in the way I must right now and I hope to see you again soon inshallah 🙂
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Amazing prayer from the heart. God will bless you and your mother.
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Thank you ❤
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Hi Susan,
I came across your blog and I am so touched by it. My own mother had Alzheimer’s (or The Living Death as I like to think of it). Anyway, I am doing a little blurb for you on my blog tomorrow. I hope that is okay. I am doing that because I think there are people out there dealing with parents, spouses, etc. with dementia….people that feel alone and disconnected…..people that need to know their feelings are normal…people that vacillate between grief and angst. Thank you for being a voice for the caretakers of the world. xo Diana
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Hey Diana,
Thanks so much. Yes, living death is a good way to describe it. Although that said, I think we need to try to find ways to make it “STILL alive and kicking despite the disease.”
I would be most grateful to be introduced to your blog followers and fans. I’ve just visited http://thenanadiana.blogspot.ca/ and had a good LOL over your bird pics. You’ve got some creative remodelling going on there too!
I’m glad you found me and mom and our story, and am be so grateful for the introduction. Thanks a million XOX Susan
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How beautiful, so poignant, your words are like a poem, so very deep from your soul! May God give you the strength you need to keep caring for your loved one going through this disease, perfectly described as: Living Dead. God will bless you for this experience.
Blessings,
FABBY
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Thanks so much Fabby ❤
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Such a moving poem, Susan. While my mother did not have Alzheimer’s, I had many of the same thoughts as she lay dying of heart disease. It seems that losing one’s mother creates a real void within us. Hugs to you. Nellie
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Thanks Nellie. I think you’re right, no matter how they die, it’s hard and when they’re gone there’s just a big hole where they once were… But I do believe in grace and that the spirit lives on ❤ Hugs back, Susan
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I know how hard it is to watch a love one slip away. I have two girl friends that have parents that have Alzheimer’s. My prayers are with you and I know that God will do right for your mother. Diane sent me to you.
God Bless you,
Mary
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Thanks for your prayer Mary ❤ Love to your friends and their parents. Susan
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My husband had frontal lobe dementia diagnosed when he was 50. He died Nov 10 2012 when he was 56. It was very difficult to watch him slowly “disappear” and become someone I did not know much at all. I think it is very difficult to watch a loved one change so much and especially for me since he was so young. I know I learned to be very patient, keep prayers going, take care of myself as well as him, and remember always all the good memories.
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Oh Rose! I’m so sorry 😦
You are right: patience, prayers, self-care and cherishing good memories are all SO important.
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Susan, I wish I had found you sooner, your poem captures caregiver feelings perfectly. I lost my mom to Alzheimer’s December 14, 2014 after a 14 year journey with this insidious disease. There were times I begged for her to go and now I want just one more hug. Thank you for the touching and accurate turmoil caregivers face daily.
Blessings,
Sherolyn
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I’m glad you’ve found me now Sherolyn and thanks for the kind words about the poem ❤
So sorry about the loss of your Mom and I’m sure I will feel exactly the same way when Pinkie Patti finally goes home. I bet your Mom sends you heavenly hugs daily.
I hope you will keep following our story and look forward to future comments – now that you’ve found us, don’t let us go 😉
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Thank you for putting my thoughts into words.
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Thank you for telling me ❤
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The struggle of holding on and letting go. And praying to God one minute and hating him the next. We have to make things better for the ones with Demtia/Alzheimer’s and the caregivers. Its not okay to “put them out to pasture” Families need to chip in and work together. Thank you Susan for all you do. ❤
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Yes Renee, you are so right! And thanks right back at ya 🙂
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What powerful words, brought me to tears. My mum has been recently diagnosed with early on-set vascular dementia and her deterioration is rapid. Your words are heart-breaking in their honesty and truth. Have just found your blog and look forward to reading more.
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Thanks Sarah. That piece makes me cry too.
The top things I have learned in this journey are: to live and experience every moment, to be open to joy and healing, to let go, and to not argue. Do not spend too much grieving losses, but rather focus on discovery and happiness in the moment. Find ways to have fun.
Open your eyes and see the both of you:
https://myalzheimersstory.com/2016/03/21/i-see-you-i-love-you-i-miss-you/
I look forward to your comments and I will follow your blog ❤
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Beautifully poem on the struggles of caregiving…Holding on…letting go… every way we win…every way we lose…But in the end, we always win more than we lose… Love is an incredible journey…Thank you Susan Macaulay for sharing.
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Mom lived another two years during which I experienced despair, joy, and intense frustration at not being able to provide her the quality of life and care she deserved and could easily afford. It was such an intense and emotional time, and I’m grateful to be able to give it even more meaning and purpose now that she is gone. I am also grateful to have been with her when she actually did breathe her final breath: dying with my mom
Thanks for your ongoing words of encouragement Johanne ❤
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