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Hello. My mother-in-law was diagnosed with COPD back in about the mid-90s, when she was around 35 years old. She has never really taken the diagnosis very seriously, and because of the slow progression of the disease, she always kind of accepted that it would someday end her life - and probably prematurely - but that future always seemed far away. She's a very live-in-the-moment kind of person. In her early 40s, she had a couple of heart attacks leading to cardiac stents being put in place. Her lifestyle was formerly very intense and high-risk for COPD and emphysema. Now she is 56 years old, and her COPD/emphysema are progressing rapidly. About three years ago, she stopped being able to work or drive, and within a year of that, she was on oxygen 24/7, which she still is now. A month and a half ago, she had a sudden and severe episode where she became very sick. She was hospitalized for about a week and it was discovered that her blood co2 levels were very elevated. She was treated with oxygen, bronchodilators, and it was recommended that she be ventilated at one point during her stay (which she vehemently opposes.) She was experiencing extreme confusion and didn't know who any of her family were or where she was. She was released to home having recovered for the most part, though she lost some hearing and eyesight and struggled to find the words she was trying to say after that. Three weeks later, she experienced another episode, but this time even more severe. She was struggling considerably more with breathing, her mental confusion was total, and the hospital physicians informed us that she MAY have a week left to live. She was transferred to a hospice facility, where no monitoring was done at all, and within a couple days, it looked like the end was eminent. Everyone gathered to say their farewells. But! A few days later, she rebounded in a dramatic way! She no longer qualified for hospice care, so she was transferred to a nursing home, where she has been for nearly two weeks now (and is still not being monitored at all and receiving NO rehabilitation or therapy - partly because she initially expressed a desire not to.) She is almost back to how she was before the first episode at this point, and she wants badly to go home. She still has some hearing loss and vision loss and her vocabulary has definitely taken a hit, which frustrates her to no end. But her husband doesn't feel like he can take care of her at home safely, and neither of them are very medically-minded so they don't seem to realize that there are therapies and programs and specialists for her condition (and unfortunately, her PCP over the past 15 years has apparently never found it necessary to inform her of these options or refer her to a pulmonologist!) I discussed these options with her today, and she was enthusiastic about pulmonary rehabilitation and being proactive about preventing episodes in the future, which I am so happy about! But the facility she's currently living in doesn't offer pulmonary therapy, there's no in-home or in-facility programs in our area that I can find (and she's much less likely to do these things if she has to travel to a facility for them,) and she doesn't even know what insurance she has or what medicatons she's on because her husband "handles all that" and he seems dead-set against her getting any therapy or treatment whatsoever, and also unwilling to budge on the possibility of her going home, which she wants so much. I don't know what to do to find her the treatments she wants when seemingly the only person with the information to do so refuses to entertain these ideas (and is growing increasingly frustrated with the situation every day.) I've offered that she can live with her son (my husband) and I, and she seems to be considering that option, but we do have four young kids who would likely cause her to be stressed by their noise and high energy levels (though we are still more than willing.) My primary concern right now is finding her a rehabilitation program, because I feel like that is crucial right now. But I can't seem to find anything within close enough distance that she'd be willing to do, and I don't have the legal, medical, or familial power to do much about any of this. Has anyone experienced these kinds of complications and have any advice as to where I can find the programs she needs?!
Thanks in advance. Any input is greatly appreciated, as things are feeling increasingly urgent.
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It is not our intention to serve as a substitute for medical advice and any content posted should not be used for medical advice, diagnosis or treatment. While we encourage individuals to share their personal experiences with COPD, please consult a physician before making changes to your own COPD management plan.