Tuesday afternoon of a lovely spring day. I notice in my journal a remark from about a week ago: Just saw a blue jay land on the table on our deck amidst the still falling snowflakes, and shake its feathers as though to say what the fuck is going on?
The blue jay if it is still around would be happy today, sunshine decently warm, temperature about 40, snow melting.
I, on the other hand, for reasons I will set out when I get back some energy, find this lovely weather in complete opposition to my mood, not because I don’t, as the blue jays no doubt do, luxuriate in the return of spring, but because that return of spring and all it suggests is particularly difficult for me to contemplate after the events of the last six or seven days.
I am writing when I am usually resting after coming back from my weekly shopping excursion, and I am way too tired to continue. Will pick it up perhaps later tonight. But what I have to say must out. And soon.
Tuesday night. Dog snoring, Carol sleeping. I’ve turned off the late baseball game I was watching. It is time to uncap what has been brewing in my head.
What started last Wednesday morning is what makes this glorious spring like day hit me like a body blow. Spring is a time when we see life waking up again, particularly after the harsh winter we have just endured. So while that is what, I expect, most folks are feeling, that feeling in me is crushed under the weight of an approaching dark shadow.
At breakfast last Wednesday, Carol experienced a choking episode, apparently on a piece of breakfast sausage, the same kind of breakfast sausage she has been eating for years before the onset of her disease and all the way through it. The night before, she had eaten the usual frozen lasagna that I serve on shopping days. The night before that, she had eaten pork chops with me.
So although I have been aware for a very long time that swallowing issues are absolutely predictable as her disease progresses, and although there had been minor signs of that difficulty, I was not prepared for the chain of events triggered by that episode last Wednesday.
That afternoon, she developed a fever of something over 101. I called hospice, and a prescription for an antibiotic was phoned in to the pharmacy in town. Ryan came and stayed with Carol while I fetched the antibiotic, which I administered over the next couple of days. I also noticed even more phlegm accumulating in her throat, some of which I was able to scoop out.
I cancelled my relief aide on Thursday and stayed home to monitor Carol’s condition. The fever came down somewhat, and she seemed to be recovering. The cause of the fever was determined to be that bit of sausage, getting into her lung, which I learned is highly susceptible to infection. On Friday, she seemed on the mend so I joined John for lunch. I had been serving her easily swallowed yogurt since the incident. Because my stock of yogurt containers was running low, I asked John to drive into town with me after we ate so I could buy some more of the coconut based variety that Carol needs because of her lactose intolerance. He came along, and on the way back he was in the car when Hanna called and I discussed with her what foods I could safely add to Carol’s diet and when I should do so. She recommended continued caution because of the danger of a repeat choking incident. When she came for a visit, she reiterated that warning.
By Saturday, I was feeling uneasy, and felt I wanted confirmation that we were over the hump of the infection and that her lungs were clear. I called hospice, expecting to ask for a visit from a medical professional on Monday. Hanna had told me that there would be a nurse on duty over the weekend, but to my pleasant surprise I learned that meant the nurse would come out to our house.
He did. He confirmed that Carol’s temperature was normal and that he detected no continuing problem with her lungs. We discussed food possibilities, such as bread, crust removed, with peanut butter for protein. Greek yogurt because of its high protein quality. We were looking for easily swallowed but nourishing foods. I jotted down a tentative menu.
The weather was warming up, and my spirits were rising with it.
But there was a warning sign. I admit that I was anxious to see Carol on a more normal diet, so I called Chip, the covering nurse on Sunday to check with him about what I was thinking of serving for dinner—elbow pasta with pesto sauce, a dish Carol always liked, as she was particularly fond of pesto. Long ago, she made her own. He thought it would be alright, but recommended that I cut the pasta pieces into smaller chunks. I did, but Carol did not seem interested in them. I switched to chocolate yogurt, and she ate most of one container decently well. She had little interest in the protein drink I also served her. At that point, I was not too concerned about her mixed dinner appetite since it was not unusual for her to have little enthusiasm for either lunch or dinner, and I supposed this was an occasion when her dinner appetite was limited. I had certainly observed that kind of thing before.
I was not prepared, therefore, for what followed.
On Sunday, I had picked up some Greek yogurt. I served that yogurt to Carol on Monday morning, but she did not swallow it, nor did she have much interest in the protein drink. She almost always has an appetite for breakfast so this was concerning.
Hanna came in the late afternoon just before Ryan arrived for our usual supper. Her prognosis after examining Carol was devastating. First, she found a sore on the roof of Carol’s mouth, which she attributed to acid from food being stuck there rather than being swallowed. Then she observed a choking fit when Carol was served some yogurt.
She said that it was time to consider switching my thinking about food from providing it because it was nourishing to withholding it because of the danger it presented of a fatal choking episode. She also, in answer to my question, indicated that the phlegm I was observing in Carol’s mouth was the result of swallowing difficulties and not the sole cause of those difficulties. Not being able to swallow efficiently prevents dementia patients from getting the phlegm down their throats as healthy people can do. Limiting it, as we had been attempting, is helpful, but not a definitive answer.
Wednesday evening. Carol in her chair having eaten some of her supper. It’s a little early for me to write, but I want to keep this section going with the hope of perhaps picking it up later after Carol is asleep.
I understood Hanna’s concern, but I confess I was not ready to concede that we had reached the point where withholding food to initiate the slide into death had arrived. After Hanna left on Monday, and after Ryan and I had our dinners, I swabbed Carol’s mouth as I had been instructed to do.
To my pleasant surprise, she was clearly swallowing the water in the sponge-like head of the swab. Swallowing it without difficulty. Ryan confirmed what I was seeing.
The next day, by coincidence Clare from Chronic Care the supervising practice responsible for Carol’s being in hospice was scheduled to come by to continue certifying her eligibility. Hanna arranged to be there at the same time. I deliberately did not attempt to feed anything to Carol before they came. I wanted them to witness what I hoped they would see: Carol still able to swallow.
I had pureed some bananas, which Carol had been able to eat on Sunday morning.
With Hanna and Clare watching, Carol ate the pureed bananas. They went down without much apparent difficulty. The two medical professionals agreed to hit the pause button on moving toward withholding further attempts to provide food.
Just a pause button.
I know that. And also know there is no way to predict how long the pause will continue.
Hanna was here today, and insisted on that point, and I didn’t need the insistence. This disease has been a very effective, if harsh, tutor for me. And I have been a stubborn, resistant, but ultimately accepting student of its hideous machinations.
Will stop here to catch my breath.