May 13, 2023

Yesterday when I picked up John from EasterSeals, the director came out to speak to me. She kindly asked me what my plans are for John's future. I knew this was coming because Edna mentioned it to me. I told the director that we've been looking at different places and had a couple we liked, and I whined a bit about how expensive they are. She was pleased to hear we are looking at options and added that John is no longer getting much from the program. Edna has said that as well. When she has the participants work on projects, John often gets up from the table and starts wandering around the room. I also know that the director has asked Edna to start documenting the things John is doing, or not doing. That's presumably in preparation for the day they tell me John is no longer appropriate for their program and won't be able to continue to participate. We had an appointment with the Neurologist a week or so ago. As usual she gave John the MMSE test and he scored a 4 out of 30. I think that's pretty similar to his previous score 4 months ago. For example, the Dr asked John what building we were in. We were at home sitting at the kitchen counter, so any answer indicating that would have been correct. But John didn't know where we were. Or what year, month or season it is. I also talked to the doctor about reducing the various medications he takes, to make the whole pill taking experience a little easier. There a few we can discontinue and there's another we can switch to an extended release formula so the pill is only taken once each day rather than twice. The bottom line is I want to be sure he takes the important medications but we discontinue ones that aren't necessary but are upsetting to him. The Dr also signed the POLST form that I had completed. That's the Physician Order for Life-Sustaining Treatment. This form is typically printed on bright pink paper and is posted in plain view for any health care providers, typically in emergency situations. John's POLST states that our primary goal is comfort-focused treatment (relieving any pain and suffering with medications). That means our goal is not to prolong life by medical means (intubation, ventilation, feeding tubes, CPR, intensive care, etc.) This is consistent with the notorized Advance Directive that both John and I signed 5 years ago in the presence of an Elder Law attorney, so I am comfortable that these are John's wishes. Getting back to the subject of John's ADLs (Activities of Daily Living) - As an example of a recent loss - He's been having more difficulty putting his socks on now - a task he's been able to do until recently. The other day I couldn't find his 2nd sock. Turns out he put it on his foot right on top of his other sock - both socks on the same foot. More often his sock will only be 1/2 on, or it'll be on upside down. This morning he was eating a banana. I heard him grunt a little and turned to see that he had finished the banana but was now biting the peel, not realizing that's not a part of the banana that we eat. (John often grunts or makes a sound instead of using words, as his language continues to slowly slip away.) This week I was watching a video about dementia, and the topic was paratonia. Paratonia is a common with dementia, and I quickly realized that's another symptom that we're dealing with. Paratonia is involuntary resistance during passive movement. I've seen this with John when I'm trying to change his clothes. For example, when I'm taking his pants off, he resists picking up his feet so I can yank the pant leg off. So here I am, bending over to the floor, trying to lift up his foot and get him to bend his knee so I can pull his clothes off or on, and maybe the best he'll do is is lift his locked straight leg up a very small bit. It's hard to take a shoe off his foot if his foot is only 1/2 an inch off the floor! Using the bathroom continues to be a point of contention. He only goes 2-3 times a day, but he's confused about what the toilet is and whether or not he needs to use it. Edna deals with it at EasterSeals, and I deal with it at home. So far he's only had 1 accident, so that's good. In a way I feel like the losses are really piling up lately, but then at the same time I also feel that the march of this disease is so agonizingly slow.