Do you think i can manage at home?

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Hello.i have lurked for a while.You seem like a  very nice bunch,but I need you to be brutally honest. I have emphysema with 30%lung capacity after latest chest infection at christmas.i'm recuperating in a nursing home and medics + social services are talking about me going home.I don't know one way or another if I'll be able to manage ,or for how long.I'm on nebulizer meds Atrovent ,Ventolin and steroids.I have no family at home and I'm 63.

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  • Posted

    Beth, I'm sorry about your hospitalization and illness. Unfortunately none of us is in any position even to guess about how you'll do at home.

    Speak very directly to all these people immediately & ask how they expect you to take care of yourself. Some people are able to keep working at 30% and some folks are pretty incapacitated. Find out the plans for both physical & occupational therapy at home. Ask if you'll qualify for any housekeeping help.

    If you want to stay in the nursing home, talk to them about that. I don't know anyone our age who's been at all happy about a lengthy stay in a nursing home.

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    • Posted

      Hi aitarg35939,

      I'm sorry-it really was a plea to those of you who are on 30 % lung capacity to tell me how you manage .You say some people are able to keep working? I'm not sure about physio ,but I do have a social worker who has arranged a carer for me who is a friend and lives close.I get financial help which I use to pay for cleaning help and medical aids from Amazon.I have been in this nursing home since mid February and though it's very nice and the staff are wonderful,I'm not sure if I want to live here permanently just yet.I have to downsize the contents of my house first-and selling the family home would be such a blow.

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  • Posted

    Hi my husband is in a similar position and has been in and out of hospital. He is at about 30% too and would really struggle on his own. He can just about manage to wash himself but could not cook a meal from scratch or go shopping so I do not see how you would manage without regular helpers. He is waiting for repeat valve procedure but having had it twice already I Don't hold out much hope. Hope it works out for you.

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    • Posted

      Thanks for your reply ros6952- it's the chest infections that have hospitalised me and made my COPD far worse.I have meals on wheels and order other stuff through tesco online ,direct to my door.(the lovely deliveryman actually puts stuff in my fridge and freezer for me),but yes,I would struggle to make a meal.

      X Beth H

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  • Posted

    Hello Beth, whilst I cannot advise you, I can only tell you of my experience, I also have below 30, am on oxygen for any exertion, I live at home by myself and am 73, I have similar medication to you plus antibotics long term to help keep further infections limited, although just had one for two months, fighting infections gets harder with limited lung capacity. I do get down, but read a lot, walk when I can. But, I have an aversion to hospitals and would rather die at home, so I have ordered palliative care at home. This can be done in Australia, not sure of other countries, would source what is available to you, home care, hospital care, what services are available, also, what are your preferences, you may prefer to be around people and a care situation, depends a lot on how you feel, I am used to solitude, many people hate it. Work out what you would prefer first, then work on resources from there. You still have some control over the situation. Kindest regards, hope our experiences help, the forum is full of some really caring people, take care.
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    • Posted

      Hi degb,

      thank you for your reply.Every response is giving me more of a picture of what is possible and your experience mirrors mine quite a lot.

      I cannot have oxygen though I can't get rid of my CO2,so struggle to make room for oxygen.I only take antibiotics when ,like recently,there was an outbreak of a rather nasty chest infection which killed a lot of people,Our NHS was at breaking point for a while.I find it difficult to walk across the room without panting/gasping right now.I've been in the nursing home since Feb 14 and though it's lovely and the staff are angels,I'm used to being on my own and prefer peace and quiet.I know there will be a time when there will be reassurance from having trained care workers look after me,but at the very least,I have to sort out my house,sell/give a lot of stuff away and make plans for when I won't be so well.Many thanks for helping me to engage my brain.

      I hope today is a good day for you..X Beth H.

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  • Posted

    which country are you living in Beth?
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    • Posted

      if you search "access to care in NHS wales"

      you may find a few helpful links, also the British Lung Foundation may have a few helpful links for you to contact.

      Wishing you all the best V

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  • Posted

    You can also request, the community matron to visit you at home and the NHS should arrange for nursing care if you need it at home.  I sent you a pm with a link.  If you are already on PIP social services should be arranging help and support for you at home. but you may need to ask for this, someone to help with cooking, bathing etc.

     

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