“You are there.” The Truth Is Tough to Swallow

CAREGIVING:  Erica the speech therapist came for another visit to check Kathy’s swallowing on Tuesday (4/29). It was one of Kathy’s bad days. There was more congestion from fluid, and we made the mistake of testing her swallowing while she was lounging on the futon. Her body was not in the best position. We had already eaten breakfast so Kathy was already tired from trying to swallow my attempt at puréed cereal. At any rate Kathy wasn’t swallowing the greek yogurt well and was having trouble with the thickened shake that Erica was trying to make her drink. Her lungs had “junk” in them and her breathing sounded wet, like the so-called “Death Rattle” they talk about. I never knew what that meant. I didn’t realize I had been listening to it.

Then the conversation got serious. Erica was concerned that Kathy was doing very poorly. She was not able to get the nutrients she needed orally. She had mentioned the stomach feeding tube to us before but was concerned because I had postponed the barium swallowing x-ray (to wait for the ramp to arrive). She didn’t feel like we should wait and thought that if we wanted to prolong Kathy’s life we should get her to a hospital. “I mean like 9-1-1.”

When we were input into the VNA system Bob, our physical therapist asked if “Kathy was DNR?” (Do Not Resuscitate) and I said rather confidently, “Well, not yet.” I said that “If she started having breathing problems now I would want her to be helped.” Bob said, “So she’s Full Code.”  I guess I didn’t understand what we were talking about when I made that decision. I started to tell Erica that “I thought, once we got to the hospice stage then… ”  She interrupted, “Oh, you are there.” She qualified that a little by saying “We never know.”  Then I think I turned to Kathy to see how much she was taking in. Erica started talking to her about the “PEG tube” to help her with feeding. I had looked online and had sort of warmed up to the idea. I told Kathy, “What we are talking about is a stomach tube, Kathy. And you wouldn’t eat regular food by mouth anymore. Do you want that?” The answer was “No.” We asked it a different way and it was still “No.” It was clear. She did not want that.

A number of years ago we started getting our “affairs in order,” as they say. We got the easier things done. We did wills, and we each have durable power of attorney. And we each have health proxies. We had started to create living wills using a form called Five Wishes. It is an advanced directive of how you want to die. I did my version (and filed it someplace). I gave one to Kathy. Mine was essentially pull the plug and cremate me, preferably in that order. Kathy’s copy sat on her desk. (more about this in a later post, I guess).

Now that Erica was sufficiently confused, we talked about what this all meant. She wanted to stress that she wants to help whatever our direction is. Since we don’t want aggressive intervention, she would have a hospice or palliative care nurse come and evaluate where we are. She also thought Kathy’s doctor should prescribe a scopolamine patch that will help dry up some of the saliva secretions and make her more comfortable. Erica left and I was feeling terrible that things were moving faster than I thought. Kathy didn’t seem to be that fazed by it. She seems to know what is happening.

(In case you are wondering, as our bodies start to shut down at the end of life due to age, dementia, or any number of neurological disorders, we may have trouble swallowing and keeping food and spit from going into our lungs instead of our stomachs. If you think about it swallowing is pretty damn complicated. It requires coordination between a lot of nerves, muscles and the esophagus to chew, moisten and propel down the right  pipe. We also have more trouble coughing to get rid of the foreign junk. Managing food and liquids is tough because foods that need a lot of chewing, or that have a lot of differing textures, like a salad or my cereal with raisins and nuts, cause problems. Liquids that are too thin, like water, cause problems too. Kathy loved to drink water. So I have to make the food more like liquid; and the liquids thick like food. The meals get pureed in a food processor and I usually end up thinning them out more with milk or broth or something. Liquids, like juice or shakes get thickened with thickeners which are made from cornstarch. There is a fine line between the ideal consistency and sludge. I haven’t found the right amount but I’m getting better.)
Managing Dysphagia in the Adult Approaching End of Life

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