This blog was originally posted on MySpace on May 5, 2008.
I talked in my last blog about a friend of ours who passed away very unexpectedly, a few weeks ago now. What I didn’t say was, when our friend Jeff W. took a turn for the worse (on or before Sunday, April 13), I was in Massachusetts to visit with my mother, and with her doctor, her hospice social worker and hospice nurse, and any of the staff there at the nursing home who needed to touch base with me, or who happened to be there ready to provide information.
My mother isn’t quite dying, but she’s not eating much at all – popsicles seem to be fairly popular with her at the moment. Sometime back in March, a nurse from the hospice agency called me to say that the doctor had invoked the Health Care Proxy, so that I would now be responsible for making decisions about her health care. My mom had been removed from hospice care the previous week, when she was admitted to the hospital – her second stay in Intensive Care in as many months. (It’s mainly about billing: she’s not receiving hospice services while she’s an inpatient, and instead of payment going to the hospice, it needs to go to the hospital for those dates of service.) When the doctor invoked the HCP, we also decided to switch her back to hospice care.
What followed then – changing her to a “Do Not Resuscitate” (DNR) status, which she hadn’t had before. When I expressed reluctance, the nurse from the hospice explained it this way: “First of all, when they do the chest compressions, they’ll break her ribs,” and it just got worse from there. She told me my mom had lost 15 POUNDS IN 2 WEEKS. That’s a serious lack of appetite, I had to agree. She told me I could think about it over the weekend – as this was a Friday – and I thanked her for that. I said that I understood everything she said, but how could I tell my 90-year-old grandmother, my mom’s mother, who visits the nursing home whenever she can in spite of her own ailments, how could I tell her that in the event her daughter’s heart stops, we’ve decided to just let her go?
Thankfully, when I talked to my grandmother the next day, she understood, and agreed it was the best thing to do. I signed the paper Monday and faxed it back to the hospice agency. But then I couldn’t help thinking, I need to get to my mother, I need to see for myself how she is, and to just be there for her, let her know I’m there for her. I set about planning a trip, which I was able to take just a few weeks later.
I signed all the papers: another DNR, plus a DNH (Do Not Hospitalize), and decided she didn’t need to have blood drawn, IVs inserted, feeding tube placed, or weight taken (except once per month, by her hospice nurse manager). Comfort care only. I talked with the doctor for the first time, the day before I flew to Providence, and I asked, “How dire is her situation? It seems that I get a different report depending on which nurse I happen to get on the phone.” He said, “I don’t have a crystal ball. It could be a day, it could be a month, it could be a year.” But he assured me there were no signs a crisis was imminent.
Our visit was mostly good. I first saw her on Sunday, and helped her with her lunch, cutting some of her chicken for her. She actually ate a good amount of her chicken and rice. I got my hopes up too high. Monday’s lunch was four or five bites, and Tuesday’s lunch (just a short time before I left for the airport) was one bite, and then “My throat hurts,” and then, “I don’t want any more.” A short time after that, she got a popsicle, and was sucking on that when I walked out the door, her wish to “say hi to Jeff and hug the boys” following me to the nurses’ station and bringing dammit stinging tears to my eyes. I went outside to where my cousins were waiting for me, and told them she wasn’t crying, she was fine, it was just me crying “because she was actually thinking of someone besides herself!”
No, she’s not technically dying, not yet, but she has end-stage cardiac disease and is barely eating and only wants to lie in bed, sleeping as much as possible. She will not get better, and at some point, she will get worse. She hasn’t been a happy person for a very long time, if ever she was at all. She misses my dad, and told the hospice social worker she’s looking forward to seeing him again. I love her, and I told her so, and she replied the same. I hope for her to find the peace later on, that’s never been hers while she’s lived. I hope there is a heaven, for my mother’s sake.