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My father has congestive heart failure; is 92 and is a living facility. He has been worsening for the few years while i took care of him at home, but a year ago he became more than i could safely handle and i took him to a living facility.
He has been complaining of shortness of breath for about a month.... he has done that for years but now seems to have worsened. The Home Based Primary Care Registered Nurse has been seeing him when i call her, sometimes but she has been able to accomplish much except try something else which doesnt work. I took him into his old gerontologist today for a consult. She said there really wasnt anything else to do. I told her I cant tell him that. She said "would he want to know" I dont think so. He's very frightened and latches on to me and doesnt want me to leave. I have no doubt but that he's progressing, but his oxygen level was 96 today so i dont think his shortness of breath is from that. I took him to a psychiatrist who needed counseling himself. He gave him ambien and he has up to 2 doses of lorazepam PRN except he doesnt know how to ask for him and it doesnt seem to help anyhow when i ask for it.
I just dont know what to do next. Tonight, he clung to me after i finally got him in bed and with one word at a time He said "you (breath) have (breath) to (breath)call (breath) me....in the morning to make sure i got through the night. i have never felt this bad. Why cant i breathe? (breath in between all those, you get it... Hes done this before and the next afternoon is okay and doesnt remember, but never for a month. He just stares and nods his head back and forth. and when he talks its always about how bad everything is, or how bad he is.

In the meantime, i have two staff members that gave their notice and a business to run. Reality is that it is 10pm now and i will be up at least working at least another 2 hours. I am exercising and eating well but of course dog tired.

I don't feel major depressed; don't need to run away. Would just like to hear some sage advise from of you that been here.

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Thank you all for your replies; they are so meaningful. bookluvr, if i do call him at pottie break, what he says is "help, i cant breathe".... please come right away.
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It sounds like your father fears the worst. I'd give him the benefit of the doubt, especially since it's going on a month now. Plus the doctor's comment. Jeanne's comment about the oxygen triggered a memory. My bedridden vegetative mom (passed away last year) was on oxygen therapy for years. She needed it to help her breathe easier. Then when she was past that need (her body slowly shutting down), the doctor and nurses tried to tell dad that she no longer needed the oxygen. But my dad insisted that she needed it to stay alive. So, the medical community kept mom on oxygen - for my dad's benefit or peace of mind. Maybe having the oxygen will make your father feel better - that it's making him breathe better and that he's not close to end. His mental well-being.

Also, for years (as in the last 2 to 3 years ago), my dad would constantly tell me to call him during the day. He was worried of collapsing and no one finding him until I came home at 6:30-7:00pm. Unfortunately, when I get to work, most times it's so busy, that I completely forget to call home. One afternoon, the gov't caregiver dropped by the house at 2pm. My dad was slumped on the recliner and could barely talk. I keep my cell phone number on the wall. They were able to call me to let me know that they called 911 and my dad had a stroke. When this happened, I felt soooo bad. He must have known that something like was going to happen. And I was too busy to call home once in a while to see how he's doing. Please don't make the mistake that I did. Maybe whenever you go to the restroom break, you can do a quick call to your father.
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I agree with Jeanne. Call the doctor back and ask if it is time to call hospice. Also I wonder if he wouldn't be better off in skilled nursing? O2 sat and shortness of breath are apparently sometimes not related. Does he have pneumonia or a pleural effusion that is making breathing difficult? Perhaps the anti anxiety meds should be scheduled and not prn if he doesn't understand how to ask for them.
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I am so sorry you are at a point where the doctor says there is nothing else to be done. Is Dad on oxygen? Would that make him less anxious, do you think?

Would it be appropriate to bring hospice in? Ask the doctor if that seems appropriate. Dad could stay in the ALF and have the additional services that hospice provides.

You have known that this was coming, but that doesn't mean you are prepared for it, or know how to deal with it! Hospice could provide support to you, too.
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