Yesterday was a weird day…just weird. I truly felt like my name was Alice and I had fallen down the rabbit hole. I kept expecting a rabbit or a cat or the Queen of Hearts to show up (or maybe just Gracie Slick!). I’m going to re-roll the tape here…maybe writing about it will help to process it. Post script…after reading it here, it seems less weird…but I can’t shake the feeling of what a weird, weird day it was. I am not quite sure what was going on inside Mike’s head…it usually precipitates some change when he has those off days. Let’s hope it is a change for the better!
In the morning it started with Mike informing me he “didn’t want to do a damn thing today.” I pointed out he was getting picked up at 2:00 for his usual constitutional and he seemed puzzled and asked who was coming. Playfully…and always looking to stimulate memory…I asked who normally came to pick him up to walk. He didn’t know. I reminded him his sister was coming as she usually does to go walking with him. He still seemed perplexed and asked who. I asked his sister’s name. Michelene. Well, yeah honey, but Micheline died in 1986. “No she didn’t,” he told me. Well, yeah…but you have another sister who takes you walking. Who is that sister? (By now I was getting a little alarmed. This was a big memory slip since he had accepted and recalled Mickey’s death again months ago and always, ALWAYS, recognizes and remembers his sister Melanie’s name.) Still perplexed he said he didn’t know. Who comes to take you walking and to do math and reading and walnut shelling and helping at church? Which sister is that? Kristin. UH. No honey. Kristin is our daughter. I figured before he got frustrated I’d help. Don’t you have a sister Melanie? Melanie. Oh yeah. Melanie. Then an argument about how she doesn’t come to walk him and Kristin is not our daughter. Sheesh. He still didn’t want to do anything today but wanted to know when she was coming.
I watched the Giffords webcast while waiting for the appointed time. Mike watched TV. There are a few movies he always gravitates toward. Vietnam era war movies. We’ve TIVO’d them for him. Full Metal Jacket is the current top of the list fave. (Platoon falls closely behind, the Seige of Firebase Gloria, Apocalypse Now….then Rambo and Rocky are also able to hold his attention. All that testosterone and aggression. Geez.) He got hungry during the telecast again. His appetite is increasing with the meds withdrawn and he is looking for food every 3 hours…ravenously hungry. His typical demand is “Feed me.” I had headphones in so I could hear the webcast and Mike’s demands were apparently not being heard since he whispers. Pretty soon I heard a raspy “HEY! HEY!” through the headphones. Looking up, I heard “I’m hungry.” I took out a headphone and walked him through the steps of finding a calzone in the freezer, getting a plate, working the microwave, getting juice and ice and taking care of his lunch. Though it is far quicker for me to do, I try to keep him independent and stimulate his mind to follow directions, remember where things are found in the house…meet his own needs. Thus he tells me I don’t take care of him…he takes care of himself. OK Mike. Whatever. He ate and off he went on his walk.
He was grumpy when he came home. Just kind of contentious like a bored kid gets. In exasperation I told him he was being a big shit. How do you spell shit Mike, as in YOU ARE BEING A BIG TURD THIS AFTERNOON MIKE???? (I was thinking M-I-K-E). Mike responded as follows. R-O-B-I-N. This was vintage Mike. I’d never have dreamed it up…it is a playful game he used to play before he was sick. Was it a flash of memory returning? His wit returning? His personality poking back through? Who knows. We got a big giggle out of it. Mikey came home from work and they were playful in their father/son poking fun at each other. Mike asked where x and y were. These were some weird, off the wall words, names which we never heard of and that made no sense. He finally said they were our other two dogs. Try though we might to convince him we never had dogs by such names…and count them, all of our dogs are here, he was not a believer. He finally shook his head in disgust and let it drop.
Rambo was on and Mikey turned it on for Mike. I was truly ready for bed but it was 8 and Rambo superseded any normal tired tendencies Mike had. When I asked if it was bedtime he said no, he was watching Rambo…but when Rambo was over and I was in the middle of something and he was ready for bed it was now an emergency to drop everything and go. Uh…hold your horses buster. And he did. But when we got to bed it was a new argument about not wearing his CPAP.
On it went…off it came. He took it off setting it aside and informing me it wasn’t doing what it was supposed to be doing and anyway he didn’t need it. I asked what he thought it was supposed to be doing. Of course he didn’t know…the question was probably far too abstract for him to connect to. I explained he had sleep apnea and the cardiologist wanted him to wear it every single night because doing without it is very, very hard on his heart and we didn’t want sleep apnea to be the cause of another heart attack. Don’t worry, he told me, I am not having any heart attack. Right. Well Mike, that’s what you told me last year and then you went and had a big old heart attack and nearly died on me and believe you me, on my watch, you do not have permission to have a heart attack and die any time soon mister.
Mike looked stunned. He did not have a heart attack, he argued. I went over the facts with him…mystified since he has been well aware he had a heart attack and a cardiac arrest. We had gone over it and over it in speech therapy. And with the neuropsychologist. He said he remembered being in the hospital for a week. I told him it was 97 days. He looked stunned. He asked how much all that cost. I told him what the billings were. He wanted to know who paid that. I said the insurance. He looked angry…and told me he was. I asked why. Because of all that money. Why, I asked, we didn’t pay anything but a couple thousand in outpatient copays. Well then why was I bringing it up he wondered? Still, he persisted, he didn’t have a heart attack and he hadn’t been ill. There was nothing wrong with him. I asked how he thought he had gotten into this state and he wondered what state I was talking about. The one where you have no memory Mike. He laughed at that…but truly argued he had not been ill. Mikey had to come down, concur, then ask really, what is the point, what difference does it make? You need to wear the mask, you’ve been wearing it for 20 years, you’re not stopping now so put it on before I put it on you. They laughed again. He put it on. At some point during the night it came off again and I put it back on. But off to sleep he had gone. He was restless…it took a while…but he slipped off. He had a very restless night, finally falling off soundly to sleep about 3.
Something was touching my face, my eyes, my hair…feeling it like a blind person feels the face of a new person they meet. I woke up fully. It was Mike. I asked if everything was ok. Yes, he told me, he was checking to see if I was OK. He had a dream. He was a DCA (and I could never figure out what that was nor could he describe it) and the government was chasing us trying to kill us. But he saved me because I was still alive. This is the second time he had this type of dream since he is home from the hospital. The first was much more nebulous, much less detailed. He could only tell me people were chasing us. Those people. This time he could articulate government. Once he established that I was fine, he fell soundly asleep. I think I’ll give him some time off today. And limit his TV watching to the Hallmark and Family Channels with me! I know I surely cannot figure out what goes on in his brain…but wish I could simply get inside his brain and take the plugs and get them into the correct outlets and make the necessary connections to get him firing on all pistons. This must be so frustrating for him….it is for me and I don’t have to live inside that brain. Trying to navigate inside all that confusion must be very, very hard.
In another strange twist of how my life turns…our current furniture causes Mike to sit kind of slouched, putting pressure on the old tailbone wound and making him uncomfortable…ultimately risking opening the wound again. I tried him on wing chairs out at Ethan Allen and found one that fits him well…unfortunately I want leather for those accidents…and they don’t have a light blue or Wedgwood blue leather which is what would be best to replace the existing light blue chair. I’ve been watching Craigslist. A beautiful…almost brand new condition…Pennsylvania House blue leather wing is available. Great price. Meets the needs. I wrote the seller, made arrangements to see. Because it is Craigslist, I worry when I go out on these adventures who I am going to see, meet, encounter. While the ad looked quite upscale…am I off to meet Jack the Ripper with my impaired husband leaving both of us at risk? The return email address had a name…I googled it as I normally do to see what I could see. Like is it a real person? Bingo. This person is. A professor at Thomas Jefferson. In the Health Professions school OT division. Where they ALSO have a center that specializes in independent living techniques and education for the aging/dementia population and their caregivers. There’s a ton of resources and educational information for caregivers of that population…plus services they provide where appropriate…that seem like they could readily transfer over to the brain injury caregiver community. So, though I have not had time yet to check out all the links and information, FWIW, here’s a link to the educational/resources section of the website. Hope it helps some of you! http://www.jefferson.edu/carah/elder_care/caregiver_materials.cfm