1-17-2022 It has been quiet since Christmas

 

A frosty morning in our backyard last week.

 

(Tricia)

Linda has been slowing down since Christmas, with the exception of last week, when she had a few days where she seemed to have more energy. She even managed to recall events in a way that she had not been able to before. Not only that, she actually agreed (and, in one instance, asked) to do her exercises, and did a good 15 minutes of simple strength moves on three different days last week, which surprised me! We attributed that to the fact that we have suspended one of her more sedating medications--the one controlling her heart rate--at the recommendation of her primary care doctor. He thought it might help her regain some of her energy. Because the medication stays in the system for a couple of months, it is safe to stop for a short period of time.

Last week, we also rented a wheelchair-accessible van to get Linda to her follow-up appointment with her infectious disease doctor and nurse practitioner (one for C.diff, one for the hip infection), and they both pretty much just said to keep doing as we're doing.  I don't like the fact that Linda is on the antibiotics indefinitely, but the doctor and NP said that taking her off either one would risk infection. (I realized that was the case for the antibiotic she is on for her hip, but I was really hoping we could stop the one she's on to prevent C.diff.) Her next follow-up appointment with them is not until June. 

Yesterday, we also had a telehealth visit with the neurologist Linda saw back in December, to go over "the results" of her evaluation. He came to the stunning conclusion that Linda has suffered memory loss and language deficits consistent with brain injury and dementia. (Um, thanks?) Obviously, this was nothing that we did not already know, so the visit was not incredibly enlightening! But we'd had the appointment on the books for six months, so I knew we at least had to try and see if anything came of it. Not much did, although he did provide some resources that might be helpful.

Linda's burst of energy ran out this past weekend. She suddenly became very tired and could barely lift her arms or legs. Although we have managed to get her up in her chair for a few hours a day, for the most part, she doesn't want to get out of bed. One of the caregivers (the one who is an RN) is no longer taking care of Linda regularly, but stopped by to visit her on Monday. For whatever reason, she took it upon herself to take me aside to tell me that Linda's lethargy was not a good sign and that she would likely go "soon." She does not seem to understand that we have had very few "good signs" over the past 18 months, and we have prepared ourselves for the worst at every turn. I'm not sure why she felt the need to remind me that Linda is dying, but she apparently felt that I was unaware of this fact. (She also forgot that she pulled me aside to tell me exactly the same thing last September.)

Needless to say, she did not get a good reaction from me. Later, she called to apologize, saying "she didn't mean to make me cry" (one has to ask, what reaction did she expect?).  I told her I appreciated her call, but I also let her know that I've had multiple (and I mean multiple) healthcare professionals tell me exactly the same thing, on different occasions, ever since Linda first fell into the coma in June 2021. Every time, all that does is send me on an emotional roller coaster that I don't need to ride again. So, I accepted her apology, and she agreed that she no longer needs to take me aside to point out the obvious. Linda will go when it's her time. In the meantime, we'll keep doing what we're doing.

I have stepped back on paying for caregiving hours this month and will likely step back again next month. I am finding windows of time during the day when Linda is more likely to be sleeping or watching TV, which means that I can handle those hours myself. The big challenge would be to handle an overnight shift myself, which involves getting up a couple of times during the night to turn Linda and make sure she's clean and comfortable. I've done that a few times early on, but I'm not sure I want to take that on again.

My main goal right now is to just try to develop some sense of normalcy in a surreal situation. Marilyn came over on Saturday, and we had a delicious lunch (calzones!) and a nice visit. Then, I was able to go out to brunch with friends on Sunday for a nice change of pace. I'm also now making sure to fit in some yoga and walks each morning as a way to keep myself as calm as possible, and enjoying being outside to enjoy as winter as much as I can, as I did on the beautifully frosty morning last Monday, when I took the photo above. I'm trying to settle down into a more healthful and nourishing routine--and that "only" took nine months of Linda being at home for me to do!  I'm still not there yet, but I'm trying. :-)