I'm off to New York this morning. I'm fortunate that my oldest daughter will drive with me, missing class to support her mom and possibly to say a final farewell to her grandma.
My mother has has two strokes this year, and, after the first one in May, told me that she felt like she was dying from the inside out. She had another stroke at the end of August, and was eventually put in a nursing home. She hated that, and, though I was willing to and offered to take her back home with me, she wanted to do things her way (this is a pattern, folks) and signed herself out of the nursing home against medical advice. This, despite the fact that I was already working with the social worker to get her out of there (albeit, I wanted her to come to my house, she wanted to go home). My brother and I weren't moving fast enough for her, she accused us of some pretty nasty things, and I left, heartbroken and angry and didn't speak with her, except one brief time, for almost six weeks.
Fortunately, we talked things through two Sundays ago. Fortunately, because already after the second stroke she had trouble speaking, and just two days after our reconciliation, her ability to speak worsened. I put it down to fatigue, as it was late in the day. Apparently, it was more than that. She checked herself into the hospital the following day, where she was admitted because she was severely anemic. (My nephew had been with her the week before and did say that while she had food in her house, she didn't seem to be cooking for herself, so he tempted her while he was there.) They transfused her, but we couldn't get much information out of the hospital staff because of those stupid HIPA laws. (Health Information Protection Act???) My brother saw her last Thursday and told me on Friday she looked terrible. He was afraid she was dying. Also, frustrated, because she couldn't communicate. He told me he thought I should come.
I am a cautious person. Plus, I have children at home with a husband who presently works out of town during the week. So I phoned the hospital to speak to my mother, and patient info told me SHE WASN'T THERE!!!!! Even more scary, there was a phone number on my caller ID that turned out to be the hospital's general # and there was no way to know who had phoned me at 4:18 Friday afternoon. Too distraught to think clearly at first (I was afraid she had perhaps died), it took me an hour or so to think to call the nurse's station on her floor. I was relieved to learn that she was still there (stupid operator!!!) and was transferred to her room. But no answer.
On Saturday AM, I tried her room again, but still, no answer. So I phoned the nurse's station and they actually asked me for information and insight about her, because of the problems with communication. I had been waiting for a doctor to phone me since TUESDAY last, and so was pretty insistent that a physician phone me SOON. The doctor phoned Saturday afternoon. It took me over 15 minutes to wrangle out of him that my mother has a blood disorder called myelodysplastic syndrome. It is a type of anemia that is pre-cancerous, incurable, controllable only with chemotherapy, but the regimen is considered too debilitating for them to try on a 76 year old woman. And she cannot go back home and live alone. However, the doctor said that there was no immediate threat to her life. (Actually he said that before he told me about the blood disorder). This syndrome turns into leukemia, so I figured I'm in for some months of caring for my mom. Which is no problem.
So, I told my family, my oldest offered to come with me, we starting setting up a room for Grandma on the first floor of our home. Since the doctor said she wasn't in danger of dying anytime soon, in his opinion, I thought I might even wait until Wednesday to leave because those had been our plans anyway -- to go East for Thanksgiving, bringing Mom with us to dinner at my sister-in-law's. But there was the matter of my brother's strong opinion that I should come. Now. (I was not in the country when my father died. That has been a burden, and my brother didn't want me to miss the chance to say good-bye again.)
So I sent my poor brother back to the hospital for his opinion on whether I should head out ahead of the rest of the family, or if I could travel later with them. He took his entire family to see Mom last night and they basically said their good-byes. He told her I was coming, and that we would get her out of there. She said she had suffered enough, and didn't want to die there, but wanted to go to her rest. Which she had already told me during our Sunday reconciliation conversation. She said she had some things to take care of (legal loose ends) and then she was ready to go.
So I am off to NY to ask a lot of questions of the doctors, but also to make sure that either way, I get her out of the hospital to her home or to mine, and let her die on her own terms. The prognosis for people with her disorder is 12-18 months at best, 6-12 if the therapy is already packed red blood cells (which it appears it has been).
It's hard, really hard to think of life without her.
Brenda