Last October, we started Hospice Care At Home for an elderly relative who suffered from congestive heart failure and desperately wanted out of the hospital where she'd been subjected to all manner of indignities and tortures in a successful effort to save her life. We had to take a really strong stand with her doctors, but after considerable.... persuasion.... she was released and brought to our home. She refused some of the home treatment her doctor recommended, including feeding through nasal tube to be followed with the insertion of a PEG in her stomach. So the doctor pulled the tube out of her and sent her on her way with a "No Code" notice to post on the refrigerator in case we needed to call Emergency Services. This was actually a kindness.
She was in Hospice Care for nine months, quite a bit longer than the professionals expected her to live. In fact, her doctor didn't expect her to live more than a few weeks after she got home if that long. She was expected to starve to death because she refused the NG tube and the PEG.
Oh, but she thrived instead. She gained strength and gained weight, she ate and drank normally, she was eager to get better. I was her primary care giver, but there was a nurse once or twice a week, and a home health aide came periodically to wash her and chat with her and cheer her up.
After nine months, the Hospice service decided she was doing well enough to discharge her, but because she had a persistent venous ulcer on one leg, they transfered her to Home Health to see if more aggressive treatment would help clear it up.
Well, it didn't. In fact, the wound got larger. Betty's spirits never lagged, but she was obviously going into decline, becoming weaker, less able to do for herself. But still not in a critical state.
I went to New Mexico for a week for my own R and R and I was informed while I was there that Betty had had a setback, a severe low blood pressure incident which alarmed the Home Health nurse no end. She and the doctor decided to cease certain medications immediately in the hope that her blood pressure would return to normal (well, normal for her).
It didn't. When I got back from New Mexico, I saw an alarming deterioration in Betty's condition. She was still in excellent spirits, but she was becoming weaker and weaker, and she was eating and drinking less and less. She had had bouts of severe nausea and diarrhea during the previous few months which were partially controlled but she was developing a real fear of eating and/or drinking too much.
Finally, a few days after I got back, she stopped eating altogether. She said she "couldn't". Food wouldn't go down. There was a blockage of some sort in her throat, she said, and it hurt to swallow. Shortly, she stopped drinking fluids except for a few sips of water now and then, sips that would frequently just come right back up.
The Home Health nurse was informed, and of course this caused even more alarm. Betty's blood pressure and pulse stayed low. The doctor was informed, and the recommendation was to put Betty back in Hospice pronto, or take her back to the hospital. I asked Betty if she wanted to go back to the hospital, and she said "Nooooo!" Well, that was that.
It actually took about a week to get her back into Hospice care, during which time she became weaker and weaker, but still her spirits remained strong and positive. The doctor came to visit a few days before Hospice was officially set up again, and she (the doctor) and Betty had a wonderful chat and time together (they go back a long way, decades.) As the doctor was leaving, she discussed with us what she felt was going on. She did not think Betty would live through the night, and she said she would be on call if we needed her help in any way.
Well, Betty did live through the night. She is quite a survivor. She has beat every expectation of her imminent demise for a very long time, confounding medical professionals right and left.
But we have few illusions at this point. We are on Vigil. The doctor has come to see her again, bringing her 10 year old son this time. Betty and doctor's son go back a long way too, and they spent some quality time reminiscing. Friends and relatives have come to sit and chat with Betty to cheer her and wish her godspeed.
Betty herself knows that these are most likely her final days or weeks. We of course can't know how long she has left to live, but she can't eat or drink, and she is showing more and more signs of cardiac failure. We make sure she's comfortable, pain free, and at ease, that she knows she is not alone, that she's with people who love her and that we'll stay with her.
And I can almost not stop the tears....