Unspeakable Matters

We had another scare last week, and were so grateful to be able to request a hospice nurse as night approached. I can’t say enough about hospice. My dad used to off-key sing, “If I had a million bucks, I’d give it all to you.” If I had a million bucks, I’d give it to hospice, and the Washington Trails Association. But that’s another story.

Mama hadn’t been feeling well on Thursday. And hadn’t eaten for two days. And she may or may not have refused her bowel meds (it is impossible to know the truth in reporting) because she may or may not have had loose stools (see above disclaimer).

Rebecca, who had gone for a visit, called me and the hospice nurse, who came from Olympia and stayed two hours—beyond the end of her shift. The symptoms were not the same as with previous blockages, but Mama was miserable, and we have learned not to mess with what might be a blockage. This is the first time she has been a current hospice patient when a crisis comes. Last fall, it took a second blockage within a few days to get her back in. Hence, this is the first time we’ve had a nurse to call.

Bowel sounds good. Vitals excellent as always. The woman should wear pink bunny ears. She wasn’t moaning in pain or vomiting. (I apologize for the graphic imagery in this post, but one becomes inured to it when providing care for the old-old.) The nurse didn’t think she had a blockage; but given her history, she was concerned. She looked up information on the internet (I assume a site for medical professionals, not WebMD), and discussed what she found with us.

We decided to wait it out, see if she could get through the night at least, so we wouldn’t have to hang out in an ER cubicle for five hours in the middle of the night waiting for a doctor on no sleep, like we did last time.

Right after she left, Mama had another bout of diarrhea. I raced down the stairs and caught the nurse going out the door. Mostly I was interested in getting it documented—fodder for keeping her in hospice, though she had just been recertified based on weight loss (I think the high reading earlier was an error, but I had kept my mouth shut). The nurse wanted to come back up and have a looksee.

She began waffling on the hospital decision, but left it to us. There can be a partial blockage with diarrhea. Mama’s regular hospice nurse, who knows her well, had started a conversation with her about what she wanted to do when she has another blockage, and this will keep happening: go to the hospital for an NG tube or stay put and manage with pain meds.

“What I am most afraid of,” Mama told Laurel, as she has told us, “is being in pain. And I don’t like to take a lot of medications.” (What she takes are Tylenol and bowel meds. That’s it.) She gets morphine in the IV when she goes to the hospital. Either she doesn’t understand that, or it’s different when it’s not by mouth. Sometimes one has to choose between no pain or no meds. Anyway, they haven’t finished the conversation or reached a decision.

Because she wasn’t experiencing the worst of the symptoms she’s had before, in the end it felt like a good test case to keep her snug in her own bed. The nurse didn’t think she should be left alone. I drew the short straw. Well, I volunteered because I needed to be away the next day, and though Rebecca had planned to go with me—a rare sister outing—it was optional. She needed to be available in case the crisis escalated, so she got the sleep-in-her-own-bed straw.

Mama took her customary single regular-strength Tylenol. She claims it helps her sleep, and no doubt it does relax her. The nurse gave her a long foot massage, and she drifted off while I tried to get comfortable in the recliner with no pillow, in the midst of our record heat wave and no A/C, with lights on (which one by one I turned off). I didn’t sleep.

Mama had one more bout of diarrhea in the middle of the night; then around 5:30 had a regular movement, after which her “belly ache and gas” symptoms ceased. Crisis averted.

Here is what we concluded. Probably there was a partial blockage. When she relaxed, went to sleep, stopped tensely rubbing her stomach, her bowel relaxed and the blockage released. The diarrhea could have been a symptom of a blockage, rather than the result of too many bowel meds; and refusing to take them may have exacerbated the problem. Death, or the ER and an NG tube are not the only options.

Be that as it may, her nurse is at a loss as to what to do about the dosages of Miralax and Senna. Living in the bathroom is not good quality of life. Nor is constipation and fearing a blockage. The hard truth is, her parts are 101 years old. They are shutting down. There is no cure for old age, and the only defense is courage to face what comes. We do the best we can as accompaniers; but in the end, no one is in charge.

The conversation about end of life will continue. This episode has helped me get more clear about my own opinion. Keep her home, manage the pain, help her relax (which will never happen on a gurney in the ER). Maybe the blockage will resolve and maybe she will be unable to eat and she will die. She is ready. The only way we can do that, though, is to keep her in hospice care.

Tomorrow would have been my Uncle Donald’s 107th birthday. He died a few months ago, and is missed. My dear cousin and his wife have nearly completed the supervision of the cleaning out of his home of 105 years and the farm buildings. A herculean task.

My cat Smudge, who “celebrated” 17 years last week (84 in cat years), is constipatingly pooping outside the litter box again. This is my life. Is there a feline hospice?