May 27, 2023

I'm struggling SO MUCH to be patient. Today we were out running errands, and I thought I was going to lose my mind so many times. I know it sounds petty, but its so very frustrating when I have to tell him things over and over again but he simply doesn't understand. It's the mundane things that drive me nuts. Trying to get him to climb into the car - he won't move out of the way so I can open the car door. I'll ask him many times to step aside, then try to direct him, but he stands there dumbfounded looking at me like I'm speaking another language. And to him I am. Once he finally steps aside, I open the car door, then he can't bend his head in and he thinks he'll damage his head getting into the car. Finally he accomplishes that, but his leg is still hanging out of the car door. I pick up his leg and put it in the car, and he responds with a scream of pain. By then I'm ready to slam the door on his leg so the scream is merely premature! Finally, a full 4-5 minutes later, he's in the car, has his seatbelt on, and I can finally pull the car out of the garage. We both got our hair cut today. It was quite a battle convincing him to sit down in the chair so his hair could be cut. We knew better than to wash his hair or even spray it with water. But at least the job was accomplished and he got a good cut. At Costco I struggled to convince him that the cart he just grabbed wasn't ours. Meanwhile people glance at us wondering what's going on. We stopped by the house between errands and I tried to get him to have something to eat and drink. That was largely unsuccessful. Then I spent a long time trying to get him to use the bathroom before we went out again. No luck. Then it's the constant assurances I have to give him that whatever we're doing is safe, and nothing is wrong. Meanwhile I'm muttering F bombs under my breath like a sailor. Or maybe not always under my breath. Each thing is insignificant, but boy do they add up. It's like my friend who has spent years caregiving for his son - it's like water torture. No drop is an issue, but the endless drops drive you crazy. But other times each of those tasks I mentioned can go easily. Sometimes he's able to do things, and other times he's not. On another note, last weekend was a dichotomy of highs and lows. Friends and family were here, and we had lots of fun and accomplished some tasks that made me feel so good. But then the lows... On Friday night we were going to bed late. First I couldn't get John out of the bathroom, and he yanked to towel bar out of the wall in the process. Then I couldn't get him upstairs to our bedroom. That was taking almost an hour when I finally woke up Ben asking him to try to help me or maybe carry John upstairs. I grabbed John's hands from above, and Ben gave him a little guidance, and suddenly up the stairs John went, as though we hadn't be struggling over it for the better part of an hour. Then 3 hours later I woke up to hear John making some grunting noises at the end of the bed. I was slowly pulling myself into consciousness when I smelled dog poop in our room - then my eyes jolted open when I realized there was no dog in our room. John hadn't been able to 'find' the toilet in our bathroom and had pooped on the tile around our bathtub, on the floor, then on the toilet as well. There was an inhuman amount of shit in that bathroom! So I spent another hour cleaning all that up, giving John a shower, scrubbing and disinfecting the bathroom, spraying air freshener, then finally going back to bed. The whole night was completely traumatizing. On a brighter note, I was cleaning up the dishes tonight after dinner and I burped kinda loudly. John just cracked up at me. It was a nice moment - he understood what happened, realized it was funny, and we laughed about it together. And for a brief time he had that sparkle in his eyes.

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.