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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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To Parody Kipling:

If you can keep your head when those you care for
Are losing theirs and blaming all on you,
If you still doubt yourself when others trust you,
And make allowance for your doubting too;
If you can wait and not be tired by waiting,
Or being lied about; you know those awful lies,
Or being hated, they just envy you,
For once they looked good, and could talk wise:

If you can sleep - then youre not a shirker;
If you can think - then you still have a brain;
If you can meet with assessors and social workers
And treat those two impostors just the same;
If you can bear to hear the truth you've spoken
Twisted by people to make you look bad,
Or watch the person you gave up work for,broken,
And you still try to help them worn-out and sad:

If you can't make one heap of all the good things
Because your life has become a drudge,
When each day you start again at your beginnings
And never breathe a word when others judge;
If you can't force your heart and nerve and sinew
To serve you any longer now,
If you know there is nothing in you
Except the Will which says : 'Hold on!'

If you can talk with critics and keep your temper,
Or with those who acclaim you - and keep the common touch,
If family and loving friends keep bright the embers,
If their voices count with you, but none too much;
If you can fill each sleeping minute
With sixty minutes of the sleep you need,
Yours is the Earth and everything that's in it,
And you have been a great care giver - believe!
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Jude you have still kept your mind even if you have lost everything else.
There is hope for you girl. Everyone is rooting for you.
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Jude, KEEPING BRIGHT THE EMBERS, TOGETHER! I'll be there with you!

You HAVE BEEN, a Great Caregiver! BELIEVE!!!
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How do I caregive? Let me count the ways.
I love you in the darkest days and even darker nights
I do worry and am anxious when you are out of sight
For I wish I could do this job with grace.
I want to fulfil your everyday's
Most quiet need, yet I never seem to get it right.
I need some space and to stand in the light;

I want to be good at this Im not seeking praise.
I caregive with a passion put to use
In my old griefs, and with a childlike faith.
I will love you but I resent this life
With all it brings,—until my last breath,
Smiles, tears, of all the time—and, if God choose,
I shall keep you with me until death.
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Having hit on Kipling and Elizabeth Barrett Browning I thought I would have a go at one of my own:

You know when your day goes from bad to worse
You're no longer the daughter but the resident nurse
At least it feels like it

Or perhaps you're the maid or the servant maybe
Making meals to throw away and the hourly tea
And throwing that too

Did you plan a life that would end up this way?
The same old same old every single day
Im sure I didnt

But you keep on doing it but not sure why
You could put them in care but you wont you sigh
Because you just can't do it

Its odd how we love and resent at the same time
How the brain of your loved one has no reason or rhyme
At least not that you understand

And then the moment comes when suddenly all is bright
They smile and talk and all seems right
For a moment

Then back into the abyss - the dementia beckoned
But it only lasted an hour a minute a second
Wait I want you back

And in that moment when she was your Mum again
Your forget the angst, the anger the pain
And weep for what was
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I don't know how anyone as stressed as you are can come up with all of that (it is wonderful, by the way). You inspired me to dust off and read a little poetry, but the thought of altering the words to suit my life made my head hurt. Kudos!
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I have slept a lot more lately and I think once I wasnt sleep deprived any more things seem a little lighter. I have made some decisions too so I think that helps. Plus they are going to have a crisis meeting re MY health so that I can get 3 hours break a week (Im not holding my breath on that one though...they have been promising me that for a year now)
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You touched my heart with your poems. Your writing is touching and very good. I love it!

I hope for a break for you! Three hours is not much. This is so hard. My heart breaks for you.
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"In Abundance"
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This is really cool. I'll be back. I might even start to rhyme. I need this. Thank you!
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Rage rage against the dying of the light.
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PhoenixDaughter - I always love your humor and your poems. please keep sharing them & I hope you get the three hours per week and maybe can build from there.

Do you have a poem for the time your mum dumped her commode in the washing up basin with the dishes and then chewed you out for throwing the dishes away? But of course would not want to eat off dishes that, although washed, once had poo on them?
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I think I got this from this site. I referred to it often. RIP Mom, I miss you.

Please don’t try and make me Remember…
Don’t try and make me Understand…
Just let me Rest and know you’re with Me…
Kiss my Cheek and Hold my Hand

I’m Confused beyond your concept…
I am Sad and Sick and Lost…
All I know is that I need You…
To be with me at all cost.

Don’t lose your patience with Me…
Please don’t Scold me, Curse, or Cry….
I can’t help the way I am Acting…
Although I will try.

Just Remember that I need You…
And the Best of me is Gone…
Please just stay beside me…
Until my Life is Done.
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OOH GIVING THAT IS SO SO BEAUTIFUL
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I agree, it is beautifully written, I wish I could claim it. I ran across it a few years ago and printed off 2 copies. One I hung by Mom's recliner and the other by her bed to remind us that she couldn't help the way she was acting, but we could sure help the way we reacted. It did serve as a reminder, but, unfortunately, we are human. My printoff didn't include the author.
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Owen Darnell wrote it hun ... ain't google wonderful
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When the $%&£ hits the pan

"What the h*ll" , as I look and stare
"Is the pan from the commode doing there?"
"It needs washing" is all I got...Oh and a glare

Poop over the plates oh delicious
Thinking if only I had three wishes
"Really Mum? In the sink with the dishes?"

"They have to be thrown" ... "Why? You're a waster"
"Well oddly enough I don't want a taste of
Poop when I eat my roast beef and potatoes"

So the pan got cleaned and the plates got the boot
A whole day of vitriol, she refused lunch of soup
BUT anythings better than the taste of poop

So what did I learn ...well don't get cross
Waste of time when you're at a loss
And you'll never get your point across
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*clap clap clap clap clap clap clap clap* I love it!

I tried one, but it was too personal, and I felt weird about sharing it. I'll try another one sometime. I like this creative outlet for caregiving experiences.
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The carpet's story

I had a great shampoo this morning
I am now free of cereal and milk
And toast and jam
And a cup of tea
And various things of that ilk.

I gleamed in the sunlight this morning
All pristine and clean
Then egg on toast
Then yogurt too
Oh and just for fun some pee

I was shampooed again at lunchtime
Im now squeaky clean again
No food no soil
No cups of tea
No trace of any stain

Then chicken pie for goodness sake
Listen I don't eat any pies
I dont eat sauce
Nor peas or beans
And definitely not fries

I was shampooed again this evening
And now I am scared to speak
Theres hot milk to come
And a biscuit too
Please leave me alone for a week!
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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
(4)
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Giving it my all,

Yes, you found it posted here on AC.

I would like to share this poem, author unknown
Asked by anonymous101100
6 years ago
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When you can't make it to the toilet on time
That's dementia!
When you can't think of the word to explain what you've heard
That's dementia!
Bones will hurt, blood will spurt, and you'll think," Oh, my Lord, What the hella"
Poo will run all over your bum and you'll think to yourself "What's that smella"
When your eyes start to blur and your chin sprouts long fur.
That's dementia!
Pardon me, but they say, when it's been a long day
That's dementia!
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The preceding poem was written by Gershun Davies and dedicated to the long suffering people of AC but especially for my friend Sendme.
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Thank you friend Gershun.
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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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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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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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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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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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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^&*%
(3)
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