COPD - left on our own to just get on with it!

Sound a bitter title but feel we have our reasons.

My husband has COPD and other health issues has recently been in hospital when he

collapsed at home with respiratory failure, we were told that he had an hour to live if the BiPAP machine didn't kick in! It did thank goodness much to the relief of myself and his 5 children....The Hospital saved him for a while more but when I see him sit and cry with absolute frustration I wonder if they really did him any favours.

Caring takes it toil, district nurses for the grim leg ulcers that are getting worse by the week, no mobility at all he is on oxygen 24/7 nebs, steroids and other medication for AF etc etc.

He is doubly incontinent also. His age is 74.

So why do health professionals say to me "do you have any help with your husband?"

Where is this so called help? and when you feel the way he does, does he need strangers giving him the pity look?

So the question is when someone is so very poorly where is the support? other than your family and a few friends who can you turn too?

19 Replies

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  • You can ask Social Services to give you an assessment for Carers to give you help with personal care for your husband. I am a carer for my local Council & this is the work we do. We may be strangers at first, but the support we give can take a bit of pressure from families so that you can be exactly that again to your husband, a wife and not his 'Nurse'. We don't give pitying looks - we try our best to give practical & professional care and help to make things as comfortable & dignified as possible for our patients. Very often we find that men in particular are happier with ourselves looking after their personal care than their family as ithat in itself can be embarrasing for them or they feel they are being a burden to their family..

    It is available for you, however how easy it is to get can depend on your area. The District Nurses can make the referal for you.

  • Thanks for your message...but obviously our area hasn't the rescources for help..as I did telephone them and was asked if we could ask family or neighbours to lend a hand.. We will i am sure get around this....I will telephone BLF and have a word with District Nurse.... Thank you again for your message. Maincarer

  • That is good advice from clearlycare,,social services will and do great work,, also the district nurses..I found this out when my late wife was very ill,,you will be surprised pleasantly i hope..take care,,wishing you well Iain..

  • Agree With Both Answers ... But I Will Ad In My Experience A Remember A Time When Social Service Took Proactive Steps In Peoples Welfare

    But Sadly Of Late They Seem To Be Hiding And Wholly Reliant On Family Members That A Might Ad Cost Next To Nothing ..... So You Would Think They Would Value And Support A Bit Better Than They Do Currently

    As With Everything Theses Days It Seems One Has To Fight For Every Inch

    Hope Things Improve And You Get Help And Support

    All The Best Daz

  • Thanks for your message..so true...re carers. Social Services were told about us back in May last year...receive a letter in February asking whether we want any help? Considering it took them 9 months to write a three line letter..I rang them and they said they haven't anyone available to help...haven't we a neighbour and family?

    Says it all really!!!!! Thanks for your reply Maincarer

  • Sorry to hear Maincarer that life is so tough for your husband and yourself.

    So, tomorrow, phone the. BLF helpline, find out where your local Carers Organisation is and make contact with them, join the local Beath Easy group..

    Are you in touch with the community respiratory service? If not request a referral from your GP.

    Using all these as a support system for yourself and your husband may help you feel less alone.

    Thinking of you, you are not alone.

    Pollyp

  • Thank you for your message and i will indeed get in touch with Breathe Easy Group and will ring BLF. We have the Hospital Resp team calling once a week and the Oxygen clinic are doing blood tests next week....a lot of charities around here have stopped operating as they have no funds or volunteers (so i have been told)...I have a very helpful young woman who helps does the heavy cleaning once a week ...which is a great help. Thank you for your kind message. Maincarer

  • Please contact social services my daughter is 47 she has lots of health issues as well as being doubly incontinent her carers who come in every day to bath, dress and generally see to her wellbeing are cheerful, helpful people and I have never seen any of them give pitying looks indeed they have become my friends. Don't hesitate ring and ask for a carers assesment. xx

  • i nearly am in tears, my lovely mr bunny was diagnosed with copd 2 days b4 the current easter break...mr bunny also has parkinsons disease...i have mental health issue...mr bunny was my carer and i his...

    after 2 wks in hospital a total shambles and traumatioc nightmare for mr bunny at times, i am home dealing with home oxygen and nebs, a nurse bunny with about 8 yrs experience in the parkinsons care stuff and about an hour or 2 advice in oxygen and nebs...

    i was awake about 8 times last night cos parkinsons makes it hard to put mask on for mr bunny if it comes on in nigfht...icould go on...

    i feel like an exhausted old bunny just about keeping off the road to the bunnies knackers yard..

    we have lovely ladies from "enablement team" daily to help mr bunny shower dress and breakfast, but without mobile oxygen unit as yet ..

    i'm jumping through hoops, like bunnies are supposed to trying to get everything sorted...

    so i do feel less isolated in my feeling having read your post!

    mr bunny has a beard and is a member of the BLF (the beard liberation front)and it's so good to now start making contact with new chums on this other BLF!

    i've printed off this *thread" with all the useful advice!

    and your original post which rang so many bells my ears are ringing!!!

    love and hugs,

    bunny x

  • The British Lung Foudation is there to help you with anything.They are all very compassionate and understanding.It is wirth giving them a call (they will call you back if you want them to) on 03000 030 555 Mon- Fri 10am-6pm

    Richard

  • YES YES YES , PLEASE RING THE BLF, I REMEMBER I FELT UTERLY ALONE , UNTIL ONE OF THE NURSES PUT ME IN TOUCH , WITH ADRIAN OUR LOCAL BLF IN PEMBS GUY, HE IS SOOO POSITIVE GETS THINGS DONE , WHICH I FEEL IS WHAT YOU NEED SOMEONE TO "SPEAK" FOR YOU , YOUR FEELING SO ALONE BECAUSE YOU FEEL POWERLESS, SO RETAKE YOUR POWER , RING THE BLF , PLEASE LOVE TO YOU JUDE

  • thank you dear jude!

    love bunny x

  • thanks so much for posting this thread !

    it has been so helpful and hopeful to me too!

    the night times and mornings are my worst times so far!!!

    this afternoon was fab with chums popping round,and quiet tv evening with mr bunny after dinner!

    love bunny x

  • when my dad had c.o.p.d i was his carer. he would not allow anyone but me to do anything for him. he would not allow social services or community nurses or anyone eals come in. even when my dad was dying i had to stay for a full week in hospital with him. he was such a proud man and wanted to keep his dignity. he was very much ashamed at the fact that i had given him bed baths and sat him on his commode wiped his backside.it was very much so hard work and i was young enough im talking 12 years ago im now 56 and have c.o.p.d myself but all i can say is if you yourself feel that you need help call social services. also ask if they know of any group organisation that will come in free of charge and help you sort of like a friend type we have them in the northeast stonem they are called. they may help with things like shopping and stuff you don't have time to do.

  • I've only recently been diagnosed with COPD and the ball has been rolling from the start. I've also got severe heart failure 2years and vascular dementia 9mnths. So can't really give advice but will continue to read this page along with other help lines.My psychiatric specialist has given me advice but Age UK has been a good help sorting benifits rebates etc.The above is just my latest health problems i/ve got several mainly heart ~vascular~skeletal.Hope everyone gets the help and advice they're looking for.

  • maincarer, i found reading what you wrote very sad, sad because your husband must be feeling very imbarrased doing things at one time in life, please get in touch with the B.L.F.and social services.

    you also need support, you must be very exhausted, but a loss where to turn to.

    i trust things will improve.

    jan

  • Hi maincarer

    Please give us a call, we are more than happy to have a chat to see if there is anything we can do to try to help you 03000 030 555.

    We also have a very good booklet about looking after someone with a lung condition - we can arrange to send this to you - you can call us or e mail your details to helpline@blf.org.uk

    Best Wishes

    Jo

  • I'm so sorry to hear this.I too have been in the same situation with my late husband when he had cancer as i had no help or support until the last two weeks of his life.Sadly you really do have to keep pestering your doctor until you start getting somewhere.I really do feel for you but do try to keep your pecker up and i do hope things improve for you.

  • Thank you for your kind message. Am so sorry that you were also left without any support from anyone...Yes i will contact our District Nurse, sadly our GP has left our surgery..so feeling in limbo at present.....Thank you again for your message and i wish you well

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