August 28, 2021 - One more thing

By the way, I do write with paragraph breaks in the appropriate places, but I don't know where they go when I hit 'publish'! (note: eyeroll!)

August 28, 2021

I’ve read they expect there to be 152 million cases of Alzheimer’s Disease by 2050, and that the sheer volume has the potential to destroy our health care system. I’ve tried giving John low dose weed gummies a few times. I’ve noticed a small improvement, maybe. But it’s not significant. He may need a larger dose. Today John asked me “What do you do when you’re not at work? I said ‘I hang out with you.’ Which made me wonder… so I asked ‘how are we related?’ He said he wasn’t sure. I suggested with a smile that maybe I’m his daughter. Then sister. I asked if we are married. He confidently said ‘No’. I told him we are married. That I’m his wife. He said ‘Susan?’ I said yes. He earlier asked me ‘Where do you live?’ Actually I thought he was in a pretty good place today. He was less agitated than he’s been recently. But it’s interesting to realize how confused he is, when I actually thought he was doing fairly well given recent levels of agitation. John has been particularly irritable and agitated lately. He yells/bitches at me and Jordan a lot. Especially in the morning. He gripes nonstop the entire time that we’re getting ready in the morning. Then I leave for work and he goes after Jordan. While she drives him to Easter Seals in the morning he complains/argues the whole time. She often calls me at work so I can try to talk him down and help him to be reasonable. He is obsessed about buying a new car so he can 'get his life back.' He also thinks he needs to get every little thing repaired on our old cars. He seems to think that I'm irresponsible for not fixing a crack in our dashboard. But since our car is a teenager now, I think that's an unnecessary and expensive repair for an old car! Here’s a few more conversations he and I have had recently: ‘I feel like I’ve been sent to prison. Because no one is giving me sufficient information about what is going on.’ ‘I’m horribly stressed.' ‘I don’t have existence. I might as well jump out the window.’ (Which is kinda funny since we’re only 1/2 a story up!) He often says he thinks he’s going to die today, or at least very soon. Every day he wants to go to Costco. When I take him, the desire doesn’t go away. He just asks about it the next day. When I say that we just went the day before he says ‘Well we didn’t look at things.’ ‘I don’t know what to do.’ ‘About what?’ ‘I don’t know. That’s the point.’ ‘I feel awful.’ ‘Why?’ ‘I don’t know. I haven’t been able to get the information I need.’ ‘What information do you need?’ ‘I don’t know! That’s the problem! I should walk away and never come back.’ Fortunately, despite many threats, he hasn't walked away yet.

August 1, 2021

John had 2 doctor's appointments this week - with the Neurologist and the Psychiatrist. The Psychiatrist is trying to help us address John's aggitation level. At prior appointments we upped one medication with little impact, so we dropped it back to prior levels. This time she recommended lowering another medication because it causes agitation in some people. We'll try that for a while and see if there's any difference. I asked about Seroquel, and she smiled because she is considering it as well. It's an antipsychotic that is often used with dementia patients. My mom used to be on it. Side effects include drowsiness so that's a downside. Although maybe not. We're not going to try it yet, but possibly will if these other medication changes don't help much. We discussed cannibis gummies again. That made her smile again when I mentioned it! The main concern is it sometimes increases paranoia in some people so that's the main thing to watch out for. The appointment with the Neurologist was next. We talked about the new Alzheimer's drug Aducam. She said John doesn't qualify for it because it is recommended for patients who are still in the mild catagory. However, they suspect FDA approval may be withdrawn because of the limited improvement it provides given the high percentage of side effects (brain swelling and brain bleeds). The Dr typically gives John the MMSE test, and they did at this appointment too. John's score was the same as last time - 12 out of 30. This score can fluxuate a little based on mood and the fact that some days are simply better than others. While a score of 12 is still in the moderate phase, it is at the lower end of moderate. (The broad phases are mild, moderate and severe.) One of the questions on the MMSE test is to write a small sentence. John struggled with that, so the Dr suggested he write something about the weather. He wrote "THE WETH" and then "THWETER", but couldn't write more. He was also asked to copy a sketch of overlapping shapes. He drew one shape, then attempted the other shape but it was incomplete and separated from the first shape. He doesn't know the date, or even what year it is, but he knew what city we live in. He can spell "world" forward, but not backward (showing he can't think through that process). The Dr asked him to remember 3 words for a minute or so, but he couldn't remember them. But he could follow simple instructions. It's always interesting to see what he knows. He continues to deny he has Alzheimer's, and struggles to 'get his life back'. The Dr spent the end of the appointment lecturing me on getting more help, and specifically intermittent care on the weekends. I don't feel that's necessary yet, and I also need to hoard money for his future care needs. She said the caretaker of one of their patients committed suicide recently and they've all been rocked by that. But again, we aren't near any crisis point and the help we get from Easter Seals continues to be amazing. We're OK for now. On another note, John locked himself out of his phone because he attempted his password too many times. I googled the fix for that, but it required a newer version of Utube than I have on my laptop. Next I tried Jordan's laptop, but his phone is too old (an Iphone 6) to be compatible with her laptop - the cords don't fit. The next step was a trip to the Apple Store. After waiting for an appointment the whole experience took a long time. But they recovered access to the phone and I had them remove the password requirement so I don't have to repeat the process in the near future. The whole experience took a lot of time, but at least it's resolved. But it's a practical example of the impact of dementia on daily living - the weirdest things can suck the energy out of you!