Had a tough time and need help in the home! — Scope | Disability forum
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Had a tough time and need help in the home!

Evers Member Posts: 3 Listener
I have been disabled with degenrative spine for some years however the last 18 months have been hell on earth, My husband , a big fit and healthy man took ill one night with tummy pain and was kept in local hospitals HDU for over 4 weeks, they said he had Pancreatitis,eventually after 4weeks and 3 days he became so ill they had to incubate and send him to another hospital hith intensive care unit. He remained very ill for next 48hrs and a brave surgeon operated on him coming back to apologise ...although he had  mild Pancreatitis it was not ftal...he'd had an abcess somewhere else unfound and he took litre upon litre ,upon litre of pus from him. ....so sad to see someone die from peritonitis after being in medical care for over 4 weeks. He passed away on that same night at 9pm , 27th June 2016. On Sept 10th I began to feel ill and after pushing myself hard kept on my feet for another 2 days(Iwas thinking it was grief) I had to go to bed...when my daughter came home she realised i was burning up...needless to say I didn't want to go to local hospital and remained at hone for another 5 days,,,by then I was too ill to care but refused ambulance and went bycar. I was taken immediatly as yhey observed how ill i was...to make this a shorter story ...I had sepsis yet no one could find from where and I was ready for home after 12 days when it struck again. This time when I was able enough they carries out ct scan , echo and lots of blood tests ....discovered I had a very faulty aortic valve which in turn had caused an aneurysm and many other heart issues.They also discovered a tumour in right lung, I was then sent for a pet scan and within 8 weeks had 1/3rd of lung removed....they then waited from Dec 4th until June 22nd (I did have pleursy and pheumonia in between) before doing the heart surgery, I now have a mechanical valve and  grafts.....first few months were hell as heart went into very fast mode  allowing me another 12 day hospital stay, I still have another cardio-vascular surgery as my sub-claviab artery is blocked to pin point but they think my body will nt be strong enough untill 12 mths have passed.....needing so many things in the home and just do not know where to turn to HELP??


  • CockneyRebel
    CockneyRebel Member Posts: 5,216 Disability Gamechanger
    Hello Evers and a big warm welcome to you

    I am so sorry that you are having such a bad time

    What is it that you need ?

    We have many knowledgeable members and advisors so please ask any questions

    Be all you can be, make  every day count. Namaste
  • steve51
    steve51 Member Posts: 7,154 Disability Gamechanger
    Hi @Evers


    I’m so sorry to hear about your current situation!!!!!!!!

    Please please let me know if I can help you in anyway????

    Many thanks!!!!
  • Evers
    Evers Member Posts: 3 Listener
    There really is no way anyone can help as such yet sharing seems to help I think and perhaps suggestions of what I should try to ease how I am now and move forward...and Thank You steve51
  • Evers
    Evers Member Posts: 3 Listener
    and Thank you CockneyRebel..so new on here I don't really know the set up yet. Unsure of available help....like I said need my hubby back (impossible I know!!) My heating broke down.....washing machine needs replacing as does my bedding/pillows/duvet etc but filled my oil for heating so rest must wait.....christmas and oil have left me poorer than ever...but hopefully I'll manage ...sometimes these things seem more dire than others...
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,676 Disability Gamechanger
    Hi @Evers

    Im sorry to hear you have had such a tough time and I am very sorry about your loss, that must have been such a shock.

    I moved your post to the Occupational Therapy advisor as I thought @Jean_Scope may be able to offer you some support.

    Please know that there are people who care, and I hope we can help to signpost you to places of support!  

    Have you filled out the benefit calculator? It may be a good start to just check you are claiming everything that you are entitled to.  From there, you could look at grants and there is also information here about fuel bills.

    Senior online community officer
  • CockneyRebel
    CockneyRebel Member Posts: 5,216 Disability Gamechanger
  • Jean_OT
    Jean_OT Member Posts: 513 Pioneering

    Hi @Evers

    I am sorry for your loss, it sounds as if you have been through an extremely traumatic and difficult time.

    Perhaps you are already accessing bereavement support, but if not, I would really recommend that you seek out an organisation that can support you through the emotions that your experiences are likely to bring up, currently or in the future:


    For practical issues related to any care needs you may have, or equipment/adaptations necessary to make it easier for you to live safely in your home, you need to contact the Adult Services Department at your Local Authority. If you are having difficulty finding their details enter your postcode at:


    I would like to echo @Sam_Scope 's advice that you use the benefit calculator to check if you are claiming everything you are entitled to, and check and the grant search tool also.

    If there is something specific that Scope can advise you on please do post your query on the community or alternatively if a more private conversation would be more appropriate, please don't hesitate to call or email the Scope Helpline:

    Freephone: 0808 800 3333 (open weekdays 9am to 5pm, closed weekends and bank holidays). Email [email protected]

    Best Wishes



    Jean Merrilees BSc MRCOT

    You can read more of my posts at: https://community.scope.org.uk/categories/ask-an-occupational-therapist


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