My mother-in-law who is 74 has emphasyema and has been on oxygen 24/7 for more than two years now. I see her struggling more for breath daily now and as she lives with us, but would like to know what to expect in the near future. She does NO exercise, and barely leaves the house anymore. She was a smoker for many years but has an occasional cigarette now (two a month at most). How long will this go on and what symptoms should I watch for? Will there be a time when she would be better of in assisted living or is it best to keep her at home? I just want to prepare myself for what to expect.
I strongly suggest that you enroll your mother-in-law in a comprehensive Pulmonary Rehabilitation Program. Look for a program that is under the supervision of a lung specialist, also called a pulmonologist. You should be able to arrange this through her doctor. In such a program, she will have a thorough evaluation of all aspects of her condition, including her emotional state, and her potential for rehabilitation. Following this evaluation, this specialist would be the best resource to answer your questions about what to expect in the future.
Let me ask it in a little more detail. Since my mother-in-law is living with us, what symptoms do I watch for? Loss of memory? Coughing? Tripping? She is doing all of these things more now and I was wondering if this is part of not having enough oxygen. Should I look for other things? Do I worry about coming home and finding her unconscious? I don't want to sound uncaring or cold, but I have been searching the web for days now and no one says what the progression and what the survival time frame is. I want to support my spouse who is watching their mother die before their eyes... what can I do to make it easier?
I am sorry to hear about your mother-in-law. It sounds as if she is struggling. She is on oxygen all the time, right? Does she have a home-health nurse or respiratory therapist come check on her? Also, if she is smoking, I hope that the oxygen is well away from her when she smokes. That is a hazardous combination, as I'm sure you are aware. The symptoms you describe, the loss of memory and tripping, can be caused by hypoxemia, or low blood-oxygen levels. Some patients with progressive stages of emphysema may tend to retain too much carbon dioxide in their blood, and this too can make a person confused and lethargic. Not to say that this is the reason, but it can be. The coughing speaks for itself. Pepole with lung disease tend to have some pretty nasty coughs. Not all, but most. Have you spoke with her physician and asked these questions? Most doctors will tell you what you need to know regarding these issues. It's difficult for anyone to predict whether or not you may come home and find something you're not prepared for. I hope that doesn't happen. But it sounds as if she is getting worse by your description. I understand your concern and wish you the best. Is placing her in an assisted living facility an option? I only ask because you had mentioned it and also, if your are worried about coming home and finding her unconsious, then maybe that would ease your worries a little. Good luck and I hope you and your husband find the answers you're looking for.
Yes, she is on oxygen all the time. No, she does not have a home-health nurse or therapist come in. A person comes in every six months to check on her levels but that is all. When she is sitting, she is fine. Her levels are normal, but the minute she starts moving, she pants heavily. Even around the kitchen. She does go out every so often, but not far and rarely. Mostly to the doctors. I know she needs exercise, but she refuses to do any. She does go up and down the stairs by herself maybe once or twice a day (she has a motorized chair for most of the time). The smoking with the oxygen is a concern to me. She just sets it aside when she smokes (in the same room). I have asked her not to do this, but she can't be far from her tube and she does it when we aren't looking. What other symptoms does this hypoxemia create? The coughing is only slight at this moment, but when it happens, she almost chokes because she can't inhale enough air to stop. Should I pat her on the back? At this time, we just try to ignore it when it happens, because we are not sure what to do. No, we have not spoken to her doctor. She tends to want to keep it between her and him and doesn't say much else. Would he talk to us if we gave him a call? This is mostly why I am out on the internet trying to find the answers but yes, she is definitely getting worse. Assisted living is cost feasible, but she refuses to go. I would think the companionship would be wonderful for her as she has no one all day to be with living with us (we both work) and right after dinner, goes back up to her rooms. What should I expect in the near future? How long does one live when they get to this point? Is there someone I can talk to to find out what more is coming? I live in the Denver area and she has gone to the National Jewish Medical Center. She started the program study for sugery, but after a few weeks, was turned down. I am not sure how to find out more about her levels, where she is in the disease and what to expect. Is there someone that can tell me? I have thought of calling Hospice, but was unsure if they would know about Emphysema and what I could do to help.
While I certainly agree with DC-RN on possibly getting her enrolled in a rehab program under the supervision of a pulmonologist, if your mom-in-law doesn't want to go...she's not going to go. I have a lot of contact with patients with end-stage emphysema or end stage COPD who are very stubborn. That seems to be a trademark of a lot of these patients. I would hate to hear of your persistance in trying to get her enrolled in such a program or assisted living facility ruin your relationship with her. Your mom-in-law may be very set in her ways and how she wants to handle this. I would certainly hope that her physician would talk to you about her condition and where she may be in her disease process. Like I said, it would be difficult to for anyone to predict what will happen next. The National Jewish Hospital is a great resource and you are fortunate to have them so close. Maybe have a talk with your husband and mom-in-law and let her know your feelings and concern and see if she is willing to make an effort to improve her quality of life.
Other signs of hypoxemia: heart arrhythmia's, confusion, increased respiratory rate, cyanosis (blue lips, finger nail beds), diaphoretic(cool, sweaty)...If she completely refuses to go to rehab or assisted living, see if you can get a home health company to see her. Either a nurse or therapist to come out every 40-60 days and check on her. Medicare should cover this as well but be sure to research it. Good luck and I hope all works out.
J.C.I., RRT RCP
i'd like to know about the symptoms develop as the disease progress. does the patient get breathless at rest? and if so, at this stage, will they definitely get more breathless on minimal exertion like walking around the house, or even turning at bed while sleeping? or even standing up after long sitting?
how bad is the breathless? fast? or deep or shallow? mouth opening? cough? sputum? do they get chest tightness or palpitation related to breathlessness?
i really need some input. any comment appreciated.
a sick patient, Suffer.
Answers to your questions as it is today and she has been diagnosed and on oxygen for 24/7 for three years now....
does the patient get breathless at rest? Not really - only upon exertion.
and if so, at this stage, will they definitely get more breathless on minimal exertion like walking around the house, or even turning at bed while sleeping? Yes, her walking around the house seems to be getting worse. She seems to have less air as the time goes on but I can't say about her sleeping. I do know that setting pillows so that she is sitting up helps her to breathe better.
or even standing up after long sitting? Not so much just standing or sitting.
how bad is the breathless? fast? or deep or shallow? Light and shallow at a faster than normal rate to get more air.
mouth opening? Yes. They tried to teach her to blow slowly through her mouth as if almost in a whistle, but she refuses to do so.
cough? When she eats too fast or after quite a bit of moving around.
do they get chest tightness or palpitation related to breathlessness? Not that I have been aware of, but she doesn't share everything.
I hope this helps.
I understand where you are coming from.my father is in the last stage of copd ,he also has a weak heart. he is not able to have any surgeries because of the weak heart and copd . he also has a hernia and a hole in his colon . my mom takes care of him 24/7 and he recently come home from the hospital because there was nothing else they could do for him he does talk to us but he cant hardly move much because he gets winded and then he cant breathe .now he is having trouble with his feet turning black red and blue and very painful so he is living in pain from that as well .the doctors can only treat him medically i hope i have given u some insight as to what my family is going through with this dreadful disease my thoughts and prayers are with u
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