The final decline

CAREGIVING: This is really a post about the week or so before Kathy passed away. I’m writing so I can remember. I need to go a few steps backward. Then maybe I can move forward.

The indications were all there. 

The pink stains
The pink stains

Kathy was starting to have digestion issues again. Besides having diarrhea, she was regurgitating food. She wasn’t vomiting but when I suctioned it seemed like I was pulling her food formula, rather than any mucous. She seemed to be having trouble absorbing the food. Shannon, the hospice nurse ordered some Omeprazole (aka Prilosec) because Kathy’s breath had the odor of stomach acid. It was tricky to get into her tube. You aren’t supposed to crush it. So, I would empty the capsule into some water and try to flush it into her tube. It came close to plugging her stomach tube a few times. Most of the little beads would get stuck inside the irrigation syringe.

There were also pink stains on her incontinence pads. Shannon thought it was probably blood, but I thought it looked too pink. I thought it might be from her medicine because she had a few meds that were red like liquid Tylenol. She was probably right.

Kathy’s one bedsore had pretty much healed, but it started to get worse again. She would always wake up with a temperature. One morning it was over 100°F. There was some discussion about whether we were putting too many blankets on her, or not enough. But, Tylenol always knocked the fever down to normal, even on the day she passed away.

Medline oversupplies
Medline oversupplies

Through all of this, things went along kind of normal. The team from Kathy’s insurance company, NaviCare/Fallon Health came to do a one-year evaluation about a week before. As Miguel and Robin came in I told them to be careful. “Don’t trip on the supplies.”

“Oh my gosh! Is this all underwear?”

I told them I had donated a lot of it to the hospice, Goodwill, and the Salvation Army. We talked about the deliveries from Medline, and how inefficient their shipping was. Miguel said I wasn’t the first person to say something. They were worried the company might be overcharging, too. Miguel took away some of the extra boxes when he left. While we were talking, the doorbell rang. It was one big carton with a few bed pads in it. I told them sometimes I receive a Fedexed carton with just two tubes of zinc butt cream in it.

In the last week, I started to give Kathy more frequent doses of morphine at night.

Morphine helps with respiration problems as well as pain. In the morning, I was rubbing metoclopramide gel on her stomach to keep her from regurgitating her medicine. Sometimes her pulse was all over the place. Most nights Kathy would have one coughing spell when Peg rolled her on her side to change her. Later I would come in and suction her before she fell asleep. The last two nights Kathy had trouble getting enough air. It reminded me of when I had asthma as a kid trying to pull enough air into my lungs.

I tried to keep track of Kathys O2 and pulse stats and when I was giving her morphine or atropine. The day before she passed is the lower right. The red syringe is metoclopramide gel that helps with nausea.
I tried to keep track of Kathy’s O2 and pulse stats and when I was giving her morphine or atropine. The day before she passed is the lower right. I wanted to make sure I spaced the morphine doses an hour apart. The red syringe is metoclopramide gel that helps with nausea.

On Tuesday, Kathy was actually doing fair during the day. Emily and I had her in her chair when Shannon the nurse arrived. She was having trouble getting Kathy’s oxygen stats with her meter. I used mine on a different finger and we got a reading that was around 90%. She said, “I’ll take it.” I think Kathy was asleep through the whole visit.
She said, “It looks like we are status quo.”
I replied, “I don’t think so, actually.” I told her about some of the issues that were happening. I needed to suction more. I said, “I threw everything I could at it some nights: atropine, scopolamine gel, morphine and even a dose of Ativan to help her relax more.” She said that was what she would have done. She asked if Kathy was urinating okay. I told her sometimes she only goes once a day. She asked if it was dark or an unusual color. I said not really. She said when that happens the kidneys are shutting down.

Sharon left and in the afternoon Louise came to help. We put Kathy back in bed with the Hoyer lift and started to change her. I hate to waste stuff even if I don’t have to pay for it. I take all the almost empty tubes of zinc cream (Balmex) and warm them up a little in the microwave. Then I squeeze out the rest into a bigger container. She said, “Oh, I see you made some more cream.”
I said, “Waste not want not.”
She was facing the other way and said, “I think it is just your Jewish side showing.” And I cracked up laughing. After Kathy passed away, Louise called to offer her condolences. I told her I really enjoyed working with her because of her sense of humor. “You kept me laughing.” I didn’t tell her that because of her age (she’s over 80), I was almost as worried about her as I was about Kathy some days.

Later that night Kathy started the deep, strained breathing.

I would try to suction her but wasn’t getting anything. I wet her mouth and cleaned her teeth hoping maybe that would help. Peg came that night and was worried about her. The sore on her butt was starting to get redder and one of her toes had a new red spot on it. I gave Kathy morphine every few hours to make her more comfortable.

Kathy slept through the night, I think. 

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