My mum is 75 yrs of age. She started smoking 20 a day in her mid 30s and only recently gave up.
She was first admitted 2-3 years ago with breathlessness and they informed us then that she had Enphysema. A year or so passed and she had no other episodes until last year when we were told that she had COPD (but not told a stage etc).
She was admitted into hospital with acute exacerbations in April last year, again just before Christmas and then the day after Christmas (she is now still in hospital with her second infection). No medical professional had explained the illness to mum so she was totally in the dark. All she knew is what I could find out from her GP or on the internet! I requested a medical meeting and we finally met with a doctor the other day. The doctor told us both that she now has end stage COPD and they are giving her morphine orally twice a day to help depress her breathing and starting her on anti anxiety drugs today to help with the panic attacks she has started to get.
Her Oxygen saturation levels upon arrival to hospital this time were 75%. A few weeks before hand they were 83% and 74% in April.
I am on only child and work full time and also tend to my dad in a nursing home am now back and forth to her in hospital. I am trying to get some sort of timeline from doctors so I can maybe arrange time off work - weeks? months? years? Can anyone on this give me some sort of indication - please.
They are hoping to discharge my mum next week. She lives alone and has 30 mins home help a day. She is refusing to go into a nursing home (which is her own choice) but I am at my wits end. She is now unable to walk out to the toilet without nearly collapsing so how is she going to manage all day long on her own. Should I refuse to take her out of hospital?
Any feedback or comments are greatly welcomed. Thanks you for taking the time out to read this.
What you describe must be very difficult for you, what with caring for both your mother and father and working “full time” as well. I can hardly imagine how you are able to do it all or if it will be humanly possible for you to do it much longer, without more help. Your description of your Mum’s condition suggests that she not only has far advanced, severe COPD but that she is probably incapable of living alone, even with your support and the 30 minutes of home help a day.
I cannot advise you on whether you should “refuse to take her out of hospital but I do suggest that you inform her doctors that, with your working full-time, it is now physically impossible for you to provide the constant care she needs and thus you cannot guarantee her safety if she is to be home alone. You should also plead with her doctors to provide you with an estimate of how much longer they expect her to live and if now is probably the time when you should arrange to take time off from work in anticipation that the time off will be no more than a couple weeks. Such predictions are just not an exact science but her doctors are in the best position to provide an estimate of her life expectancy. You should also discuss with them what actions will be taken when she begins to fail at home: That is, your decision and hers in advance, will she stay at home and die at home or again be admitted to the hospital and, if re-admitted to hospital, what measures will or will not be taken to keep her alive, including life support.
Finally, seek help from others and try to find a way for you to not face this difficult situation, alone.
Thank you so much for your response. It is greatly appreciated.
I spoke with the hospital social worker yesterday and she is putting forward a case for mum to get a f"ull homecare package". Unfortunately in my country, this only equates to 3 hours per day (21 hours per week). This in itself is very difficult to get, but she is making a case for it so hopefully my mum will be eligible. I am refusing to have her discharged until something better than what we currently have is in place.
I tried to bring up a few topics with my mum last night (in a round a bout way) but anytime anthing is mentioned that is associated with - her illness worsening, final days etc her answer it "I don't want to talk or think about that" or "let's just take one day at a time" so I didn't push it. Maybe the social worker or doctors might be better placed to get some decisions/thoughts from her?
To be honest there is also a lot of other stuff that she doesn't want to talk about too. At the moment I am not entitled to collect her pension so all of the household bills are piling up. She has no bank account and deals solely in cash so has no direct debits for bills. I am trying to work through this too.
To be honest, I haven't given her final days much thought as it is too painful and I am hoping it's years awaay. Realistically, I know that's probably not the case. I think the decision to die at home or keep re admitting to hospital is a very difficult one. As I am not a medical professional, it will be difficult for me to know which attacks are her last/final ones and which are not so it will be human nature to call an ambulance?
The doctor did explain to me that down the road should they need to incubate my mum, she would not recommend it as in general COPD patients don't extubate (sorry not sure of spelling)?
There is so much to think about, it is quite over whelming. I am not sure that we have any support groups for COPD but luckily I have good friends to support me.
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