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Carers UK Forum • The inane ramblings of a raging insomniac
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The inane ramblings of a raging insomniac

Posted: Thu Mar 22, 2012 5:09 am
by Simon Turner
Captains Log :- Stardate 22/3/12 4am

I find myself jealous of my wife who lays sleeping gently beside me, and of my child blissfully dreaming of the stuff that only an innocent child will dream of, even a 2 hour reading session of my favourite John Grisham novel has done little to invoke the remotest inclings of slumber.
After recent events I find myself on a 3rd night of being unable to sleep, my mind racing with a milllion thoughts of what has transpired these last few days and of things to come in an unknown and very uncertain future, yet unable to lock on to one single thought about anything in particular, again reading has done little to provoke distraction and clarity in my thoughts.
My sincere apologies to the trekkies amongst us for a poor attempt at humour but my mind may aswell be in space for all the use it is to me at this point in time.
Why is this happening to me? what have I dont to deserve to be in this horrific situation? wasnt it enough that my childhood was hardly one to yell about with joy and happiness that I now have to suffer and endure the lifes events that I now face?
15 years of watching my wife suffering and struggling with a desperate battle against the depression that gripped her as she tried to make sense of her life, I feel I have done little to help and at times may have somehow made things worse for her, certainly her mother made life very difficult for us with her unwillingness to relinquish the overpowering control she had of her youngest daughter, using lies and spite to try and seperate us, telling her youngest daughter she was worthless and that she only had her to take care of her parents in their twighlight years, 21 years old when we met and still under a 10pm curfew. How I hated what her mother had done to the woman who became so precious in my life.
It wasnt ALL bad, we had some good times and after many miscarriages we finally had the one thing my wife and I so desperately wanted, a child of our own and, for a short time, life was perfect for both of us, we were happy, of that there was no doubt inspite of my wifes continuing battle against the deepening depression.
The depression finally took over and I realised that life wasnt so perfect after all, my wifes depression with the added pressures of looking after our newborn child proved to much for her to cope on her own and I had to quit work and come home to become a "full time" carer, it was then that I realised I had actually spent the last 15 years of my life being a carer albeit in the eyes of the powers that be, part time.
Then that fatefull day in march and my wife had a stroke, on top of an already difficult to manage diabeties she now has this new and horrific condition to deal with.
She came into the kitchen crying uncontrollably, I thought that the phonecall she had gone into the living room to take had simply been very bad news until I realised that this was much more than being unable to speak through greif, she was unable to speak that was true but also she was drooping lopsidedly, unable to speak other than a moan as her jaw hung loose and she was dribbling from lip to floor in a continuos flow of saliva.
That was the point when my entire world fell apart, obviously the ambulance was called and, as she lay down in the back of the ambulance she screamed out again, another stroke this time more severe, struck with horror at the situation I couldnt go with her to the hospital for I now had a new problem, we have a daughter, no family nearby that I could call on in times of crisis, I HAD to be with my wife but I couldnt simply leave our newborn child on her own, what was I to do, where was I to turn? The thought of an "associate" came to mind, not a freind exactly but someone I knew well who had children of her own came to mind, it was my only hope, years of dealing with someone with mental health issues meant my social circle of "freinds" is extremely limited, the stigma of being with someone with mental health issues from people who simply dont understand meant that your freinds were there when everything was "normal" but otherwise kept you at arms length. She was my only hope, fortunately understanding enough to come to my aid in order to allow me to leave my precious child safely in order that I could get to the hospital to find out about my wife. At the hospital it turned out that a 3rd stroke had materialised but fortunately a doctor was on hand to wotness it and swift action had been taken, to that doctor whom I never met I owe a debt of gratitude that could never be repaid.
Eventually things became clearer and my wife made sufficient recovery in order to be allowed home to resume our life together, but at what cost the strokes had taken their toll?
Life was different now, adaptions to the home to allow my wife to function in as near a normal manner as possible, social services casting critical eyes on me, judging me, daring me to show any sign of weakness that I was not upto the task of taking care of the one who I loved so dearly.
So a year passes and things seem to be improving, my wifes mental health issues are no longer as severe as they were thanks to a therapy group, but even that was difficult in the early days as without clarity of thought the therapy seemed to unravel the very roots of our marriage and almost cost me everything, saved only by a collosal fight on my behalf to salvage some semblance of order from the carnage of my wifes confused and agitated mind. Since that day our relationship has grown stronger than ever and continues to do so on a daily basis and we are truly happy together, the bond we have between us and with our daughter being the sticky gooey stuff that binds a family together we are unbreakable.
Until a few days ago that is, it was a better day, it had been hot outside and we had spent a happy day as a family, that evening whilst bathing our daughter my wife suddenly went very quiet mid song and became unstable on her feet, again unable to speak, another stroke! Oh god the panic inside me was unspeakable as I watched my life unravel again, helpless and unable to do anything, then, as quickly as it came, it passed and my wife seemed to return to near normality, speech returned and was clear apart from the fact that she was no longer able to say "S", it was now more "TH" as though struck with a lisp, im running for the phone when a resounding "NO" roared through the flat, my wife flatly refused to allow me to call for help, insisting that she was fine and that it had happened before! I was dumbstruck, when had this happened before? I was totally unaware, it turns out that a week or so previous I had gone out on one of my precious "me time" days and that whilst putting the pram up to take our daughter out it had happened but she didnt tell me because she didnt want to go to the hospital as she knew she would be kept in. Begging with me now I relented under the stern warning that even the slightest hint of her having another episode that I would be calling an ambulance, the main reason for not going was that we already had a second MRi scan booked at the John Radcliffe in a couple of days time, fair enough but I would be calling her neurologist in the morning to discuss the events that had just occured.
So the following morning as promised that call was made, reassurance from her neurologist that he would be at the Radcliffe on friday and would phone us then with the results of the MRi scan which was now, yesterday. During the conversation I was told that initially he was planning to use a stent in my wifes brain to gently open the affected arteries in my wifes brain to prevent this from happening again, but, with the news of another stroke AND of minor previous episodes which may well have been so called "mini stroke" or minor epileptic seisures caused by the initial stroke, a stent is no longer an option, therefore nothing more can be done other than to monitor preventative medicines in the hope that a further stroke can be avoided. I asked a question I wish I had now not asked, the likelyhood of another more intensive stroke occuring in the future, no assurances could be given, a stroke of unknown severity can take place at anytime, anything from minor to fatal we have no way of knowing.
The turmoil of my mind is unabating inspite of this incessant rambling, Ive found no peace or clarity this past hour whilst writing this to try and make some space in my head which may allow me to rest, another coffee and another attempt at finding something to distract me even if for a short time, pointless trying to sleep now, in 2 hours maximum my daughter will awaken and a new day will begin, at least I am up and can sort our daughters breakfast thus enabling my wife to sleep in and get some much needed rest whilst I start the day of keeping house and entertaining our daughter. I dont feel like it, I have little energy yet somehow must get through another day.

But, a new day of uncertainty will begin, a day of watching my wifes every movement, listening to every word for signs of things going wrong mentally or physically, will I ever be able to relax? I fear the future and what it may hold, some thoughts that I havent written down here simply because to put them into words would bring it into reality and something I do not wish to face, unless I have to....

How do I cope from here on in armed with the knowledge that I now posess? How do you deal with the uncertainty of what the future holds in this given situation? Certainly no-one knows what their future holds but mine I know has a sinister element, what on earth did I ever do to deserve to be put in this situation, to deal with the hell and the horrors of the last 15 years only to for there to appear to be no end in sight. This is my life, I dont like it but nor can I change it, Dont I deserve to live a normal, happy life with nothing more than minor ailments? Even my own life has been plagued with ill health of a serious

Re: The inane ramblings of a raging insomniac

Posted: Thu Mar 22, 2012 6:34 am
by sturdygirl
Dear Simon,
Reading through your post is see a very compassionate man with a heart full of love.
You love your family deeply, but they can manage without you, now is the time to think only of yourself, wife and daughter.
In life things happen, we have no control over them, sometimes fate deals a bad hand, but you have coped so well, you have a strength that many people will be in awe of.
I don't have any answers, just admiration.

The only suggestions I have are to contact the stroke association, (although I'm sure you have already done this) they have a section for carers, see about a benefits check, a carers assessment, and most importantly, look after yourself, maybe a visit to your GP with a view of speaking to a councillor? All of this takes your valuable time I know, and I'm pretty sure you have trudged these roads before, but I am hopefull that somewhere there will be help available for you.

All of your virtual friends are here to support you

Re: The inane ramblings of a raging insomniac

Posted: Thu Mar 22, 2012 8:30 am
by Lazydaisy
Dear Simon,
I don't know what to write.
I agree with all that Sturdygirl has written.
((((((hugs))))))) to you.
from Jane xx

Re: The inane ramblings of a raging insomniac

Posted: Thu Mar 22, 2012 9:19 am
by Booksey
Hi Simon

Can't offer any more advice I'm afraid only hugs
I often wonder why some of us have such difficult battles in our lives others seem to sail through with out a care. But then you are loved and you have some one to love some people go through life with out ever having that.

Please take care of yourself xx

Re: The inane ramblings of a raging insomniac

Posted: Thu Mar 22, 2012 9:20 am
by Minnie
Reading your post I have tears in my eyes, I understand only to well the way you feel,
although difference being mine was my mum, not husband and wife relationship, but
the panic you describe sent shivers through me, I can vividly remember that panic
still have nightmares, of watching the strokes take control. all I can see is paramedics
pulling and working on mum. not a nice picture . so I understand the sudden fear of
what happens next, ie. your future. all I can say is try a day at a time, cherish your
wife and the time you have now. in any relaxing good times take this comfort in
and keep it close. to give you strength for any times ahead. concentrate on you wife
and daughter. for now. nobody else. hope I don't cause any upset in what I have
said. sending you big HUGS , and know your friends will be here ,holding your hand through
these hard times.
Minnie x

Re: The inane ramblings of a raging insomniac

Posted: Thu Mar 22, 2012 9:21 am
by poppett
Dear Simon,

You are truly a wonderful, devoted husband, father and carer. I have no idea what to say but pray you will find the strength to carry on, whatever life throws at you and your lovely little family.

Take care

Re: The inane ramblings of a raging insomniac

Posted: Thu Mar 22, 2012 10:56 am
by Myrtle
Dear Simon, reading your post all I see too is a warm, compassionate man with a heart fill of love.
Although you love them, it's time to tell your Dad that you simply cannot go any more as you need all your time, energy and money for your own situation. If he shows a quarter of the love you do, then he should understand.
And yes, God forgive me, I've stood sleepless, knackered and stressed looking at my oh sleeping peacefully and thought 'it's all right for some'.


Re: The inane ramblings of a raging insomniac

Posted: Fri Mar 23, 2012 1:18 pm
by Simon Turner
Thank you everyone, it means alot to know you are there in support.
I didnt do this therad to invoke response, more to try and clear my own mind to try and make some space for what is going on and what lays ahead.
Itd Friday, D day, we are sat by the phones, both on edge waiting for the Neurologist to ring with the results, we are both scared of the news that may be coming but we also both need to know.
Another night of little / disturbed sleep last night, im really not doing too well at the moment but I keep going (coffee tin is taking a real hammering though) I need to get through this stage in order to be able to have a bit more certainty in what the future holds, until we know we cant do anything.
The suspense is killing us.

As for the rest of the family, they still dont know, I havent phoned them and told them, I dont need to be dealing with that right now as the conversations will inevitably turn to how awfull things are for them at the moment, call me selfish but right now I just dont have space in my head for that.

Re: The inane ramblings of a raging insomniac

Posted: Fri Mar 23, 2012 2:47 pm
by Lazydaisy
Simon, had to smile at that about the family telling you their own ills. I know that feeling.
I hope that the phone call comes very soon and that it is positive.x

Re: The inane ramblings of a raging insomniac

Posted: Fri Mar 23, 2012 5:38 pm
by Simon Turner
Well thats an entire day wasted waiting for a very important phonecall that never happened!
Now weve got the weekend to get through, I will be ringing the hospital 1st thing monday morning and expressing my displeasure. Honestly you would think these doctors would know we are stressed and waiting for these results wouldnt you?