October 17, 2021

A few weeks ago was the 1 year anniversary of my mom's death. It felt like a cloud hanging on me all day. I replayed the events of that day as the current day progressed. I'm relieved that milestone has passed. I think the only open issue I'm still dealing with is the application I filed with FEMA seeking reimbursement for my mom's funeral costs. COVID was declared a national disaster so FEMA reimburses funeral costs for those who have died from COVID. I filed the application in April but after a few months FEMA claimed they hadn't received most of the documents I submitted. So I resubmitted them. Then they claimed that her death certificate, doctor's note, and positive COVID test didn't qualify because of the wording on the death certificate. They would have qualified but the rules changed depending on what month the person dies in. FEMA told me to get the death certificate modified. So I submitted the forms for that, with yet another doctor's note, and am still waiting for the revised death certificate. I'm hoping to get it any day, then resubmit that to FEMA. Government processes are mind boggling. John is showing some improvement on his new medication - Seroquel. It's an antipsychotic. He's on the lowest available dose. At first I didn't see any change, but the improvement I can now see most clearly is that Jordan doesn't call me as often in the morning when she's dropping him off at Easter Seals. He was often raging that the car she's driving is his - because it used to be - and he would demand that Jordan get out of the car instead of him. His parting aggression was hitting the wind shield and griping as he walked into Easter Seals. So that's not happending as often these past few weeks. He is still aggitated much of the time. and is very confused most of the time, but it seems he's been a little better. We have another appointment with the psychiatrist this week so I'll be interested to hear what she thinks. I'd like to increase his seroquel dose but it might be too soon for that. John has had some difficult days at Easter Seals. Sometimes it's because he has gas or needs to go to the bathroom, but he doesn't seem to know the difference and he doesn't want to do that there. He demands that Edna bring him home. I've told her it's fine with me if that becomes the preferred solution to resolve the issue. When he's upset like that it takes her hours to distract him and get him in a better mood. She and Cliff (who John really likes - he's the sharp but blind man who is 104 who tries to help Edna with John as much as he can) planned a day at the beach with lunch. Usually John would be thrilled with that and have a great day with his 2 wonderful friends. But the last time he was quiet and reserved the whole day. When I picked him up at the end of the day he was crabby and snapping at Edna. He hates taking his medications. He says the pills are killing him (that's among the other morning tasks that are killing him.) I want to ask the psychologist which meds I can crush or at least break into smaller portions. He kind of choked on a pill recently and demanded that I call a doctor immediately. When I didn't call the doctor, he demanded I call his brother Tom. John said he thought he was going to die and I wasn't helping him. He refused to drink water to wash down the pill. Finally he did and it was fine again. But he remained mad at me for a while. A couple things he's said recently... After spending some time with Danielle and baby Jorge one day, he later asked 'Where's the baby with the face?' Another day he said in frustration 'If I don't have anybody who talks the same language then I can't get anything done. I don't have anybody who can help me. It's embarrassing.'It saddens me that despite his confusion, he's aware of the embarrassment of the disease. We recently went to an Oktoberfest with a few of John's friends. It was really fun and John had a great time. His friends take such great care of him. One of the guys came all decked out in Oktoberfest garb complete with pins on his hat. He brought a pin for John too - from Knotts Berry Farm's Gasoline Alley Auto Race where John once worked. He wore the pin all night. A few days later John brought the pin to me to show it to me, and proudly said his friend gave him that pin. John graduated from Servite High School 45 years ago. This week was their homecoming football game and then his class reunion a few days later. John's friend George took John to all the events and looked out for him throughout. One event was a mass at Servite. George told me about an awkward moment that occurred during communion. George planned that John would stay seated in the pew when George went up for communion. But another alum sitting next to John encouraged him to go up as well. As George was returning to his seat he heard the priest saying something to John because John wasn't holding his hands in the traditional way to receive communion. The priest asked John if he was Catholic, and John answered 'Yes, I'm Catholic'. By then George arrived to help John, but John resisted so George whisked him back to his seat. No one in the small crowd said anything, but certainly they noticed. John was a little perturbed by what happened, and George stayed with him throughout. As George said, it wasn't a big deal, but it's a moment that would never have happened but for the disease. Edna takes John to mass occassionly so I asked her how he handles communion with her. She said she talks him through what's happening the whole time during the mass (they must be rather loud to sit next to with all that chatting!) and he follows her and does what she does. Also the priests at that parish are familiar with him now so it's not a problem. Then we discovered that Edna and George are members of the same parish so they may recognize each other when they bumb into each other there! So, despite a significant increase in John's confusion (he's puzzled most of the time by what is going on around him), we are blessed by people around us who look out for us, are generous to us and thoughtful of us. The burden of the disease is getting heavier and heavier, but we do feel supported and loved.