8-25-2021 Accepting a new phase

(Tricia)

Over the last few days, Linda’s memory seems to have gotten worse, rather than better, especially in the morning. However, she was fairly lucid last night. Although she still insisted she could walk (and was upset when she discovered she could not), she knew what the year was, who the president was, and where she was. She remembered aspects of the day, and she did not ask where Mother was, which was a relief. 

But the saddest moment came after the nurses came in to help her use the rest room and prepare for bed. Ed and I left the room to give her privacy, but when we returned, Linda was incredibly upset, saying that she didn’t feel that they treated her like she was a person. My guess is that the nurses were simply being efficient and perfunctory, because they have so many patients to care for and need to work through the rooms quickly. But that doesn’t change the fact that this is an awful situation. Because Linda was more in tune with the present last night, we think her situation truly hit her in that moment. However, in the future when the nurses come to help, I think I’ll stay in the room, just to be sure all is well.

Yesterday, Marilyn and I met with the head nurse and the assistant head nurse of the facility, just to get a medical update. Linda’s pneumonia has cleared, thank goodness, and she has finished her course of antibiotics, which was very good news. She still has a cough that she is trying to get rid of (Linda is constantly asking us, “When will this cough go away???”), but we hope that will also disappear very soon.

However, head nurse Pam also let us know, almost in passing, that the staff believed we were unaware of Linda’s true state and that we were being too optimistic about her recovery. I was so taken aback, I wasn’t sure how to respond. In that moment, I simply said that she can let “the staff” know that we are well aware of the nature of Linda’s situation, so they do not have to be concerned on that front. 

What I wish I had asked her, though, was how they expected us to act. What is the right way for a family to deal with a situation like this? What should we be doing or saying to exhibit appropriate “acceptance” to satisfy the medical staff that we are not living in an alternate reality? I would have liked to hear her answer to that.

I just heard from Marilyn this morning, and she notes that Linda has lost the lucidity of last night, and that she has returned to forgetting where she is and why she’s there. She is denying that she has ever had physical therapy. Once again, she asked where Mother was.

As upset as I was with Pam, I do realize that hope is beginning to fade. We are starting to accept that we are entering a new phase with Linda where we must plan for a future in which her condition is the best that it’s going to get—or at least close. It’s not pleasant to imagine that future, but we have to prepare for it nonetheless.