Monday, 1 July 2013

Petrified

Image by Musin Yohan
Tomorrow holds bleak promise,
offering naught
but that of darker days ahead. 
Storm gathers up its tricks,
marks time.

You are the burden that I carry,
tote on heavy laden shoulder,
shoulder well leant upon. 
I am weary of it all. 
Of late I’ve wished you dead.

I shall dream of Medusa, gaze on her. 
What better than a heart as cold as stone
no longer beating to your rhythm. 
I could be no more petrified than I am.

Anna :o]

My handsome one was diagnosed with young-onset vascular dementia while in his early forties, some thirteen years ago.  He is in a sense lucky as his dementia presents as apathy and he sleeps perhaps eighteen-nineteen hours out of twenty-four.  He could not exist alone and requires prompting for most of his daily living needs.    Without prompts he would never wash, shave (he has a beard and it would be down to his knees) or change his clothing.  He would eat!

He is never unhappy and it is probable he is more content (he was a worrier) than he was prior to dementia.

His happy apathy has been a blessing in another way, in that I know he is safe when I go to work – I do not have to worry about him ‘wandering’ when I am away from home.  I need to work to pay the bills, the biggest being the mortgage.

A recent event has changed everything, an event that could have led to his death and indeed mine if I had been at home.   After much angst I have sorted the problem out, removed its potential of harm.

But I know and have known since last November that his decline is accelerating and there will come a time when he will not be safe at all if left alone.  But the need for me to work will still exist.  In today’s depressed market it is unrealistic to consider down-sizing, and if indeed this were possible, the upheaval and the ‘strangeness’ of a new home would accelerate his decline even further.

So the need to ‘put him in a home’ – a place of safety -sometime in the future, possibly the near future is the only option available.

This is something I have been aware of since not long after his diagnosis.  It is something I do not want.  How could I hurt him like that?   How could I forgive myself?

The stigma of dementia hangs heavy on all those involved.  You find out who your real friends are – it appears my husband had none…  even close family members, (handsome one’s)siblings back off and you become more isolated…

Dementia is a terminal illness, of that there is no doubt and it devastates all it touches.  I do not want my handsome one to go into a home – I would rather he die first; die before he becomes a stranger to me and I to him.

I went to sleep yesterday hoping he would be dead when I woke up.  If you are not in the same position as me, you will not understand this.  I do not want his mind to die before his body does.   It is not a selfish thing; I want him to die now while his personality still exists, I want him to die because I love him.



31 comments:

Heidi said...

Oh dear, sweet Anna, I am so sorry. I sent you an email earlier before I read this, so go ahead and ignore some of it. I wish that we lived closer, he could come visit with the sweetie-pies and me during his alone times. Dementia sucks and you are so very brave. I am sending you lots and lots of hugs.

And, as always, your writing is brilliant. I feel like I am going to waste away from the longing and sadness in this poem.

love, love, and more love...heidi

mindlovemisery said...

Awww Anna this breaks my heart many hugs, many hugs for you. Your writing is exceptional as always and your compassionate wisdom, resilience, and inner strength astounds me

Anand S Unni said...

This is beyond my emotional limits. Left me in tears. I could only hope against all hopes that everything turns out well.

Mary said...

Oh this is so sad. And yes, I do understand your thoughts. YOUR burden is great. You are the responsible one. And on the horizon there is nothing happy to look forward to. Your poem expresses your feelings well, honestly. I commend you for that. My thoughts are with you!

rallentanda said...

Oh yes..some of us do understand it. Life is cruel but the cruellest thing of all and I have seen this too many times is how family desert these people I cannot tell you how sorry I am.Your pain must be excruciating.

Kutamun said...

I understand your love , Anna, and you neednt be ashamed or guilty, best wishes , mate

Brian Miller said...

dang. that last stanza anna...the dreaming of medusa and to leek on her because you can be no more petrified....ugh so hard the decisions you must make and live with as well...i am sorry...

Grace said...

Oh wow at the burden and personal share Anna ~ To carry all these financial, emotional and physical responsibilities, you are a strong woman ~

I don't know how this feels honestly but I wish you peace and love for your journey and that of your hubby ~

planetcyberluz.com said...

Dear Anna, my heart aches for you.
You want him to die because you love him. I understand completely. My husband died suddenly of a brain haemorrhage. Had he lived he would have been a vegetable.
Beautiful, beautiful writing.
May his passing be peaceful... before he no longer knows you.
Dear God, what a burden. Much love, Tigerbrite

Leovi said...

A poem that has left me petrified!

Helen said...

I do know how dementia takes your loved one, turns him or her into an unrecognizable person. I do understand the overwhelming challenges you face providing care, I do realize family members and make-believe friends are of no real help as time goes on ... it is a horrible situation to be in and I am sending you love and emotional support .. from my computer keyboard to your monitor. Stay strong.

Lolamouse said...

This is heartbreaking. You convey the sadness, the love, and the hopelessness that you're feeling. Seeing a loved one slowly drift away is so difficult. Hugs.

Little Nell said...

You are very brave to share your innermost thoughts and wishes with us in this way. The poem is beautifully written. May your dreams be peaceful after all and bring you rest from this enormous burden.

Helena said...

I can only send huge hugs. I wished my mother-in-law peace through death. It did come a few weeks after. It's not a selfish wish as you say. In fact it's quite the reverse.

Martin said...

I read your poem and thought, it's one her best. Then I read on and thought no, you Anna, are one of the best.

Love to you and your "handsome one."

Jerry E Beuterbaugh said...

There is no shame in wanting suffering to end. I hope peace comes much sooner than later for you.

ssmatthews451 said...

powerful, emotion-packed writing

Buddah Moskowitz said...

Sending you my prayers and good wishes. I can only imagine what it is like in your shoes. Sending hugs as well. Stay strong. Mosk

Willow said...

Powerful poem. You speak for all of us on this difficult journey, though my husband's dementia is Alzheimer's. Dementias differ as do people but regardless they wear us down . I too am weary. You are a brilliant poet. I am sad to know you must work too. I don't know how you do it. Sending hugs with empathy.

Kathe W. said...

Oh I am so sorry and sad for you, to watch your handsome sweetie decline before your eyes must be the hardest thing- my prayers to you and your husband- may peace and tranquility come to your home

S.E.Ingraham said...

Anna, Anna - I don't know you but I do know dementia and many of her cruel guises and feel for you in your horrid dilemma. You are doing very courageous things in a time of terrible peril and in the face of things that should be asked of no-one. Your beautiful one is so fortunate to have you, whether he is aware of it or not. I pray to whatever fates there are that you get your wish and that his physical body gives up before his dementia becomes complete. I get that and do not think it unreasonable of you in the least. I don't believe he would think badly of you either if he could consider all the angles. You have written a powerful piece and explained your situation with articulation and truth...I am sorry you have been left on your own to deal with this by so many. People become so frightened by things of this nature and needlessly add to the cruelty already being inflicted. Please keep writing about this. It needs to be talked about. You are doing a good thing...know that in your heart.

wordifull.com said...

So sad, yet beautifully moving. I'm so sorry for you and the decisions you must face.

R.K. Garon said...

I understand.
Peace
ZQ

Optimistic Existentialist said...

A lot of beautiful melancholy in this wonderful post. I could really feel the emotion that this was written with and from.

Nana Jo said...

Many years ago when I offered a friend condolences on the death of her husband, she said words I have never forgotten: "Thank you, but his mind and heart died years ago and I did my grieving then. I have now lost his body and the two have been reunited and I can only feel gladness." Her words moved me so much, I wrote them in my journal.

Your post is so moving and honest. People tend to back away from anything which frightens them. You and your handsome one will be in my prayers. Bless you.

Lyn said...

Courage is part of our life stream..just when we want to stop, when we even say stop...we take another step..otherwise we'd have perished long ago. I see your heart..you live it, can write about it so beautifully...full of grace. Be blessed....

gsb said...

it is sad that you have to endure alone..to be shunned and forgotten by friends and family is the hardest part of your whole story. I can only pray that someday you will be able to walk in the sun shine. I admire your bravery and ability to put it on paper. I have a personal belief that people like you is where God finds his Angels.

Tess Kincaid said...

Peaceful thoughts...much love...

hyperCRYPTICal said...

Thank you for your very kind and welcome comments folks - very much appreciated.

Although probably visiting half of all links, I apologise to those who I have not (had time) to visit.

(Will reply to your email soon Heidi!)

Anna :o]

Jenny Woolf said...

I am so, so sorry to hear that you are carrying this burden. For him, I am relieved that he is not unhappy, and he is so lucky to have you. It must be very difficult having no help. Surely you are not at all wrong to wish it to end, because end it must, and why not end relatively kindly rather than waiting for it to get worse?

YOu convey your feelings so wonderfully in this amazing poem.

scotthastiepoet said...

Perhaps as you might have expected, this piece really caught me, Anna - very moving, as well as superbly crafted piece.
My mother, who suffered with dementia, passed away peacefully this April.

Wishing you the strength to cope as long as you are needed...

Regards Scott