Where do you go?

Where do you go when the one you love and care for has reached rock bottom?

Where do you go for help? Support? Advise?

Or even a hug?

You have tried all the usual channels.

Made phone calls and visits explaining how he is.

Jiggled and juggled all the new meds.

Ignored all his pleas and even the screams when nothing is working.

Where do you go?

You can walk away and leave him be.

You can let him struggle on alone and scared

You can ring for the medics who will take him to A&E

Where they will tut and sigh saying oh what can we do?

So home he comes to a dark empty house

Sorry and sad to know how he treated you.

Where did you go?

You went for a walk alone with your dog.

To think and remember so much you have shared

You didn't go far - you couldn't do that.

But the question remains ....where do you go?

x

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31 Replies

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  • You come here my dear Pat, to those who understand and care for you so much. We can't solve it, perhaps we can't even make it any different at all for you - but at least we can travel alongside you whilst it is all so very hard and you aren't in contact with that wonderful tenacity and courage that I love and admire in you so much.

    Sending you my love and hugs to wrap around you, to hopefully shield you from the pain of what you endure day after day.

    Those who live with those of us who experience the physical pain suffer too and you, the very strong you who is struggling so much just now is evidence of just how painful it is to be the carer.

    I'm feeling impotent, wanting so desperately to make a difference for you - so I guess that's just a taster of your daily life.

    Hoping, hoping hoping that you can feel my care for you across the miles.

    Take care of you Pat,

    Shirley

    Xxxxxx

  • Loves you Curlykins.

    xxx

  • Loves you too dear friend

    Xxxx

  • May you both find the energy to put one foot in front of the other and find a bit of light in a dark corner.

    Sometimes girl. In the words of a mate. Looking at our very sick chicks in Helen house.

    For some people life has dealt a crap hand.

    No comfort at all. But true though.

  • Hi pat remember the things u would say to me when I was having a bad day that there are people who care about u and want help u if they could, pat I know what it's like to lie there and scream with pain when my meds don't work and I know one will come to help me, when David has the pain he knows that u are their for him to hold him and love him and to keep him safe.

    Hugs and kisses to u.xxx

  • Thank you my friend. Sometimes it builds up amd up til I can't seem to find any way out. All OK now. Like a Weeble - can't knock me down!

    Big kiss!!

  • Pat you do so much for other people ,

    I go along with Yogibe

    wishing you the best pat

  • Bless you

    x

  • Please take this virtual hug from a complete stranger.

    I do not know you so if I'm offering advice on an avenue you've already explored then I apologise. Is there a carers centre you can seek supporte from? I know there's not a lot out there, but our local centre has been a hub of helpfulness for my loved ones. If that's not any good for you, stick with the dog walking & remember there are others online who care :-)

  • No strangers here just friends we don't know yet!

    Yes we have a local village branch which covers about 4 local areas. No always easy to get out if David isn't well.

    Sometimes, and I know it will never happenm it would be lovely for a bod to come in, sit with him so I go get my hair done. But as I am growing it doesn't count!

    Hug x

  • I feel for you

  • Bless you it must be a real challenge every minute of the day . Its hard enough to watch the person you love crumble with out being not able to help and stabalize things . We on here are always to try and help even if its to listen or give advice or suggest helpfull hints . I do hope you get some help and relief . Thinking of you xx

  • Thanks Donna. Been at it too long and sometimes I need to stand back and have a scream.

    This forum has been wonderful over the years and yes we all help each other. Sometimes though being on the other side of pain, and a positive happy person, I need a scream. All finished now

    x

  • Hello Pat

    Sorry to hear that things are not getting any better.

    You have been through so much and both of you must be feeling the struggle just goes on and on.

    Have you discussed with your GP possibly arranging for a period of respite by putting David in a nursing home for a short period of time. Sometimes it can be arranged that the Pain Clinic can refer Him onto a ward to try and calm the pain that he is suffering with and introduce stronger medications. It cannot be a satisfactory situation you find yourself in so you need a more intensive pathway to give you that respite of a few days away so you can breath free for a time

    Are you dealing with Social Services, they may be able to step in and give you a chance to walk away for a time to give you a rest There are situations where they can give you a break. So your life can have some normality for a time, even if it is just to do housework or see family members. They may be able to give you help in the home

    BOBxxxx

  • Oh yes Bob. Dealing with social works such as is left of them. You know how they don't operate even though David is classed as critical and can be a danger to himself.

    I'll message you cos something I need to ask.

    Meantime I battle on but now with my smile back thanks to some lovely posts and messages here

    x

  • Sending big hugs P... Bit late wading in here so hope by now you're feeling a bit better and that David has had a bit of rest and things have calmed down.... Crisis is just that: a crisis so if it's possible in the moment to realise that then it must help to know this too will pass. Having had a bit of a melt down recently myself I know that my other half really did well to stand firm in the moment with his solid supporT. This wasn't always the case and he used to fade away so now I feel he's with me I feel so much better. David is blessed to have you but who's there for you ?

    You can occasionally close the door when he's safe and take some time for yourself so you can recharge your batteries... Think about yourself Pat. Xxx

  • Guess this has been building over many months and now with change of meds he sort of hit the deck, As te GP and wonderful consultant were getting his meds sorted I wanted to scream - what about me?? Gp increased my happy pills which wasn't wuite the answer but the easiest option.

    Like your other half there has to be a strong one or we all hit the deck.

    Yup fine noe just getting ready for arrival of the snow!! Had the storms so snow is next.

    Bigs hugs and thank you as always for you support

    x

  • Thanks Dan. Kind words from so many can only lift me up. So....suitably recharged ..onwards and upwards. Ish

    Pat x

  • Hi pat if I lived close to u I would be there in a flash to help because u have done so much for me I know that I would not be here if it was not for u and I know that david has the best care and love that anyone can give.

    I know is that I send my love and kisses to u both.xxxx

  • Shhhh!!! Don't tell social works or they will walk away. Might be getting somewhere with them. Even a little might is better than a NO.

    x

  • go to your gp and ask them to reffer you to talking changes or you can refer yourself hope this helps

  • Thanks yes. I live in Scotland and we used to have simmilar. Like everything else - cuts cuts and more cuts.

    x

  • You go out with the dog. I would love to be able to care for a dog. I'm just not well enough.

  • Good Question we are desperately asking for our 18 yr old granddaughter

    I fear she will commit suicide if the blasted medics do not find a cure for Nummular Headache its hell on earth all thanks to an idiot who glued a door onto a cupboard instead of screwing it correctly so it fell and hit her head

  • I am sorry reallyfedup. Is there anything I can do to help your daughter?

    My post was really meant about being a full time unpaid carer and where do we go for help.. But like many posts it can be interpreted different ways.

    Pat x

  • its my granddaughter and honestly theres little anyone can do

    its down to the medics to get their heads around the condition

    The big problem is theres too few cases written up let alone diagnosed because they cant be bothered to listen properly to what patients are saying when they describe the symptoms

    For nummular headache they are very very specific yet 2 neurologists at Great Ormond St sat there together and effectively told me I was nuts when I suggested they were missing something vital

    proved I was right all along

  • Well I don't know much about her condition but is there a charity somewhere which might understand better?

    I never chritise the medical profession who have looked after my husband so well over the last 30 years. What I am saying is how hard it is for those who look after loved ones to get respite, someone who understands and will talk with them.

    Have you posted on any of the forums about your granddaughters condition? Doctors and consultants don't know everything es[ecially with rare conditions.

    Pat x

  • I have searched and searched for everything

    She is under the top neuro in the Country but still theres nothing that helps her pain

  • Probsbly a dilly question but what have the pain clinic and consutant suggested? It isn't always about popping pain tablets. It is about pacing herself so as to minimise flair ups and manage the pain. No chronic pain sufferer is ever completely pain free. Sometimes the simpler answers can help.

    There is also a 2 week pain management course where you can learn so much. How not to stress which tightens muscles and causes pain to worsen

    x

  • She has already tried every single painkiller and anti epileptic drug they throw at neuropathic pain

    She has been through weeks of talk therapy

    She has been to pain clinic and had lidocaine injections

    End of the line is Botox done by the only top neuro licensed to do them and they do not work either

    Its not stress its sheer bloody pain and episodes of lancinating pain from the injury site which absolutely nothing touches every bit of research i have read says same thing plus because theres not enough patients in her shoes around the world no one wil do any serious research on it

    Many teenagers in her boat would by now have become junkies or topped themselves

    Thats the bottom line and you have no idea what i would like to do to the blithering idiot whose downright negligence and stupidity caused the injury because their lives are not ruined

    but the life of an incredibly talented girl sure as heck has been

  • I am sorry there isn't anything anyone can do to help her.

    Lucky to have you fighting her corner. Stress and worry cause muscles to tighten which does add to pain.

    I hope she finds something she enjoys doing and the injury allows her. Never say never. I have a very rare hereditory eye condition and have been used as a guines pig to find a cure or prevetative treatment for others. Won't help my blindness but maybe one day it will be something of the past.

    Big hug for her - granchildren are very special - warts and all.

    x

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