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Hello all,

I have been a young(ish!) caregiver for my mother-in-law, who suffers from dementia, for the last three years now.

I am in the process of creating a new poetry site primarily aimed at carers, but also people with dementia as well.

The blog is an honest account of my experience of caring over the last few years in poems - some silly, some exasperated, some happy, some sad - of my last three years caring for my mother-in-law, who suffers from Alzheimer's disease, and is aimed at helping to support other caregivers in a similar position.

DG x

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Another by stepmom:

One Silver Moment

Out of the dust, floating,
a shining moment rose. . .

Your faded eyes warmed
with recognition.
Reaching out from the vast greyness
where you were imprisoned,
your hand, thin and trembling,
touched my cheek.
Your voice straining yet firm, you whispered
"You know - I love you".

Then grey folded you back
in its envelope.
Awareness dissolved again
to dust.

This is my silver moment now. . .
rolling through the hallways
of my emptiness.
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Not by me, but by my stepmom, about my father:

Invalidated farewell

I watch in tender desperation
as corners of your thoughts
unfasten, fall, dissolve
like wintered-over leaves
composting in a pile

I wash your threaded body
guide small-piece suppers
to your weak, obedient mouth
its passive smile
signifying
innocent acceptance

I cry, not for the burden
but for the emptiness
as fog embalms
your eyes
shrouding identity, location

I'm nudged at times
by gentle pangs
that you are blanketed
in contentment

while I am the one
who is lost
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Blue eyes no longer
Lovingly, sparkle and shine
Please, look into mine
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Sad eyes looking through me
how sad my eyes will look,when this is through

Patience hurts so very much
So very much I will hurt when I lose my patient

caring for the one i love, and missing out,
I will miss out on caring for the one I love
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She doesn't look up when I enter the room.
I know she knows I'm there
Is she still there?

I quietly sit down so as not to disturb
She keeps her eyes closed
I don't think she's sleeping

Is she thinking back to the times of her youth?
What does she think about?
Does she remember the times of her youth?

She looks up and smiles, a sad smile.....
I know she is happy to see me
I chat for a while

She doesn't say much but she nods quite a bit
I hold her hand but she doesn't squeeze back
Does she feel the love I am trying to convey?
I can't hug her anymore, she might crumble away

I stay for four hours
It passes quite fast
Will this be the last time I see her?
Does she see me?

I kiss her cheek
I try not to cry
Until our next visit
Then I say Good Bye
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What do you see mom, what do you see
what are you thinking when you look at me?
A friendly young woman you've seen once before
A caregiving friend
but not anything more?

Please open your eyes, you're not looking at ME
Do you know I'm the child you once bounced on your knee
Whose heart now is breaking since you no longer see?
Have you lost all the time that made up your past?
Are the memories all severed, did anything last?

Are your dreams filled with laughter and long ago friends
is your body remade there, are you young once again?
Do you re-live the seasons, do you hold someone's hand:
oh I hope there is comfort somewhere in dreamland!

To outlive mind and body is such a cruel joke,
just another poor patient that the aides prod and poke -
Made to rise in the morning without any say
in the things that you'll do till the end of the day
when finally at night you're tucked back into bed
...surely to god you'd be better off dead.

Still, I'll offer you comfort as best as I can...
Come for a visit – just hold your hand,
I lotion the skin now so wrinkled and dry
and I brush back the tear from the edge of my eye.
I'll bring news of your loved ones, share the magic of Spring,
do my best to bring pleasure from many small things.

For I know that inside that old body must dwell
the soul that will last 'til tolls life's final bell.
And I try to believe that one day in heaven you'll see
all those left to mourn you, and you'll really see ME.
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Jude, condolences on the loss of your dear mum, sorry for your pain and grief. Thank you for your many contributions to AC even while you were in the trenches of caregiving life. May your personal faith and the memory and love of your mum sustain you during your time of grief. ♡
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Thinking of you, Jude, and wishing Godspeed to your mother. Keep in touch xxx
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Your strength and determination and your caring heart have been evident in your posts as you shared your journey as a caregiver, your poem is a poignant eulogy. I'm sorry for your loss.
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Jude, I am so sorry for your loss. Your journey has been a long one with caregiving. Your mom is now free of this disease. May you find peace and comfort in the coming days. ((((Hugs))))
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God bless
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So sorry for your loss, dear J.
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Jude all I can say is love and hugs to you. You have shown such courage and caring for your Mum, Thank you for comming back and sharing with us your Mum's last moments.
It is so painful and probably not at all what you expected. May your future bring you happiness
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Jude - God bless you! You have given so much to your mom. Thank you for all of the humor, all of the wisdom, all of the encouragement you have given to this board. You are in my prayers.
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Jude, I am so sorry for your loss.
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Love you and thinking about you.
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The time has come and I feel empty..thank you all for your support xxxx
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Beautiful Jude, you have a wonderful way with words, ND your pain through all of this comes through in your writings.

I am so sorry this is so painful as you are nearing the end, it always is, no matter how hard is has been, and we always wish we could have them back, though not in the debilitated way in which they leave us, but healthy and free on pain.

I especially understand that you wishe that you could have her home for her final journey, as she had wanted, but Sadly, sometimes that is just not possible.

I am praying for the end of her suffering, and yours. I Love you Jude, you have been an incredible daughterand Caregiver, and an amazing mentor and friend to me! HUGS SWEETIE!
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As always dear J. Love and easy passage to your mom and strength to you
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God Bless You too PhoenixDaughter~
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Just love and hugs from across the Atlantic, dear. B
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Phoenixdaughter,
Words cannot express, but you have, how sorry that this is the end for your Mum.
Everyone including you, are the honor guards escorting Moms (and Dads) all the way through to their end. It may feel like it at times, but this is not the end of your life...
It's not over yet....
Love,
from Send
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When the darkness finally descends will I feel grief?
I imagine so but tinged with relief
I watch as her hands turn cold and blue
And think to myself this is not you
This isnt the woman who once was strong
Who fought so hard and fought so long
Before me all I can see is the shell
It was bad before but this is hell

I am helpless before her, just watching her stare
And when she is restless I brush her hair
She calms once more her mouth tries to speak
But no words come just a grunt or a squeak
And the eyes continue to stare at me
Not knowing who I am or when she will be free
She refuses all food all medication all drink
But now they let her and I just watch her sink

Throughout all the years I have whined and moaned
Yet I would swap everything to have her home
To let her be where she wanted to be
In her bed at home with her family and me
Sleep doesnt come for me now not at all
I doze and think I hear her buzz me or call
I know before long the call will come
To tell me I am sorry but your Mum...........

I hate this disease that robs your kin
It takes your brain but leaves your skin
God bless all you carers for your road is tough
And there is no-one who can praise you enough

God bless you all xxx
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How does care impact your life
How very kind to ask
When what you really think we do
Is sit upon our a**

Oh I can tell you what I need
Is so desperately to sleep
Oh we can help with that they say
I'll put you down for 3 hours a week

Is that all? their pens are poised
No I need to recharge I must have a break
Well let us know nearer the time
Then we will tell you what you can take

How can I book a holiday
If I dont know if you can provide care
We dont guarantee it
Well nothing bloody new there

I want to go shopping once in a while
Or feel the grass beneath my feet
Well you have 3 hours a week now
But you designated that for sleep!

So actually what you want to do is nothing
I think I have got that right
So why dont you p^&* off back to your desk?
You're all a shower of s^&*%
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Strong as an Ox

Life pass me by? You are having a laugh!
I have been a mad woman all my life
Done more by twenty than most at forty
And had two kids and was a wife

Life wasn't always good but thats good too
For you learn to appreciate the highs
But sometimes the bad times never seem to end
The abuse, the pain, the lies

Then the kids grew up and I was free again
Not that I was ever chained up before
Now I was free to find who I really was
But did that ever happen? Im not so sure

Therapy, check! Regression therapy , check!
Everything taken out, looked at and put away
So I am all sorted now and I know the real me?
Foolishly I thought so...until that rainy day

Im not sure when it started to rain
I didn't see lightning or hear thunder
I didn't feel the rain beating down on my face
I didn't feel torn asunder

But gradually I realised I stood in a trough
Unable to leave.... and it was filling with water
Some days slowly some days very very fast
And I was the sole carer, the only daughter

Sometimes the sun comes out to play
And everything seems good for a while
That strong as an ox feeling does come back
And for a moment I can feel myself smile

I know I am still here....somewhere
I am sure I haven't gone totally yet
And when this mess is all over
I will be strong as an ox again I bet!
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The phone always rings when your in the bath

To avoid the phone I now have a shower
Its quicker you see and I avoid the glower
Of the ringing that annoyed her
The missed call I didn't answer
And who was it? Like I would know!

Today was different I was sat on the loo
The buzzer rang and it took me a minute or two
To finish what I was doing and go on through
'You're too late I've already peed, I kept calling you '
But I was....is there any point? no!

Sorry Mum I'm here now, lets get you changed
She seem quite odd even more deranged
So I began to change her but she was totally dry
And I mentioned it to her ... Oh why Oh why
Did I think that was a good idea?

I told you I wanted you but you never replied
And she promptly peed on the floor I could have cried
Mum Mum sit down or we will have a real mess on the floor
So clean it up thats what you're here for
Is it Is it? I guess it is

This virtual world is where I exist
A person with knowledge of some of the care bits
I help where I can and argue now and again
To put a different point across sometimes in vain
But I exist

But deep inside I want to matter
Not just me the person who gets fatter and fatter
I want someone to see I a no longer alive
And for them to help me to thrive
I am past the point of no return
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Aww thanks Kimber actually thank my Dad god bless him .....he always said it was fun to make up rhymes and many a car journey was spent doing just that, but I am no poet - just someone who can make things rhyme a bit
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Phoenix Daughter - I really hope you write a book - your poetry is amazing and tells it in all of its ugliness and patience and humor. Bless you
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The carer's story

A night of broken sleep again
I hate being sleep deprived
And just as you find that deep peaceful place
The bloody morn arrives

So breakfast is made I went back to bed
I had to get some sleep
An hour later I am wide awake
From Mum there's not a peep

I check the lounge she's fast asleep
I could tell by just the snores
And then I see her breakfast
Spread across the floor

Erm Mum what happened here I ask
A simple enough request
I don't know it wasn't me
(how dare I even suggest!!!!!)

Carpet cleaned and shes asleep again
So I set about getting lunch
And as she lost her breakfast
I made a sort of brunch

Waking her up was a bad idea
Flipping heck talk about grumpy
She threw the plate onto the floor
Along with yogurt and later wee

So I cleaned the carpet yet again
It has more shampoos than me
But I have to say job well done
And carpet fresh and clean

She seems to be quite weird tonight
Dinner came and again a mess
She not talking to me at the moment
And there's food all down her dress

I bloody hate this disease she has
It takes you bit by bloody bit
Your brain your thoughts and in the end your life
She wants an end to it

Each day she asks me to help her die
It carves my very soul in two
Whatever misery was planned for me
Did it have to involve my mother too

One day the darkness will eventually fall
I figure I will feel relief
But I suspect that when it is all gone
I will actually miss her beyond belief
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