September 29, 2020

My mom died yesterday. Despite the long journey of dementia, the end came fast. Looking back over the last few days of many calls with the skilled nursing facility, I suppose I should have been more aware of death's imminency. I guess because we did the death watch for a couple days with my dad, I expected the same with my mom. Still, during this past month while she was in the SNF, I was always told she was stable. It wasn't until the last couple days that they started to use the word declining. And it wasn't until yesterday morning that they finally said we could visit her in person. I got that call on my way into work. And of course it was a crazy day because it was the first day the kids were returning to school. I called my brother right away and we decided that we'd get together in the early afternoon and go visit mom, and say our goodbyes in case we didn't get another opportunity to do so. My brother lives and hour and a half away so he can't show up as quickly as I can, and I didn't get the impression we had to hurry just yet. I asked them to call me though, that I could get there pretty quickly if necessary. We were both driving to meet up so we could go see our mom together, and then I got yet another call from the SNF, this time telling me Mom had just passed minutes ago. So we ended up going to see her after the deed was done, and had to say our goodbyes that way. Because Mom was in a covid ward, we had to wear masks, face shields, gloves and gowns. But her room was at the end of the hall, right next to a side door, so we were able to slip in that side door, put on all the PPE, and walk into her room without passing anyone else. It's been a month since Mom tested positive for covid, so according to CDC guidelines I'm told she wouldn't really have been infectious anyway. And fortunately that means we don't have to quarantine. Today's jobs are to move her furniture out of her memory care room before we have to pay the net month's fees, and also to meet at the mortuary to make cremation arrangements. We will bury her ashes with my dad in Grand Junction at the military cemetary there. Those are the plans my dad set in place a few years ago, so at least we don't have to figure that mess out. But of course that means we have a trip to Colorado to make. It's an end to a beautiful era, and a beautiful life. Mom was strong, sweet, thoughtful, and had an easy laugh. She was easy going, but knew her mind and stated her opinions. She always put her family first and loved spending time with her grandkids. Dementia robs people of their essence, and it's horrible to watch it steal the core of who they are. While I'll miss her terribly, I'm very relieved her battle is done. I'm sad that I wasn't able to be with her these last 6 months because of covid. I never thought I'd miss out on the last 6 months of her life, although I bet she'd say she was glad I did. She told me once that if it came to that point in her life, to know that I wanted her to invest my time in my family, not her when her mind was gone. I appreciate it that she made her wishes known. It helped us know how to navigate the dark days. In these past 2 years since my dad died, I've always pictured him in heaven with a glass of amazing wine in his hand. After all, changing water into wine was Jesus' first miracle, so I'd like to think it tells us a bit about heaven. Anyway, yesterday I imagine my dad greeting my mom in heaven with a huge hug, a kiss, and a perfect glass of wine. They loved each other thoroughly, so I'm certain it was a beautiful reunion.

September 20, 2020

My mom is still in the skilled nursing facility (SNF) that is associated with her memory care program. She hasn't had another covid test since she tested positive, but I'm wondering if she's over it by now. She hasn't had a fever since the first week, and when I talk to the care givers, they always say she's 'stable'. They've had her on oxygen much of the time because her pulse oxygen level drops below 90. She fights the oxygen tubes, and since it bothers her I've asked them to leave the tubes out. They don't follow my request, so I'm assuming their policy is to keep patients on oxygen. As a SNF they take a more proactive approach than we prefer. Previously Mom was on palliative hospice care, which focuses on comfort care. Last week, when Mom was fighting them because they were replacing the oxygen tubes she took off, her blood pressure was high. So they put her on high blood pressure medication. That annoyed me, so I requested to speak with her doctor. After 5 days of repeated calls on my part, I finally got someone who was responsible and she had a doctor call me. He agreed to take her off the medication once I explained our position (that she wants comfort care, not proactive care, and that another ongoing medication isn't necessary after an unusual blood pressure spike.) He also agreed to stop another medication that she'd been taking for some time that was no longer needed (a med given for combative behavior some time ago when she was more active and agitated). In general, covid has taken a lot out of her. They say that whenever they enter the room, she tells them to leave her alone. Or she shuts her eyes and acts like she's asleep. She's not eating, but she drinks Boost or Ensure so she gets some nutrients. I sent cookies for her, but they weren't letting her have them because they were concerned she'd choke. I pitched a bit of a fit about that, so they had her evaluated and then allowed her the cookies. Cookies seem to be the one thing she likes, and also the one thing she'll eat, so I want her to have them. Maria (our favorite care giver) is back to work at the memory care floor, so she went across the parking lot to visit my mom last week. Maria said mom didn't turn her head to look when Maria walked into the room calling her name (like she always does) "Gail Marie Buegler!" Mom was looking out the window. Maria walked up to her face and spoke to her for a few minutes before she had to head back to work. I'm hoping mom will be moved back to her regular room in a couple weeks so Maria can keep and eye on her, and hopefully we'll get clearance to visit soon. It's been 6 months now since I've seen her... John had an appointment with his neurologist this past week. It was uneventful except his MMSE test showed improvement. The MMSE is a simple 30 point test that provides a very quick overview of his cognizance level. John's score was unusually low last time, 6 months ago. He scored 11. This time he scored 15. We chalked the improvement up to dementia medications that he's on now, and maybe this time it was a good day, and the last test was given on a bad day. I forgot to bring up driving for him. John hasn't driven in about a year and a half, and he remains angry about it. He wanted to discuss it with the doctor, but we forgot. John believes that if the doctor had a better undertanding of his situation, a better understanding of his abilities, then the doctor would let him drive. Of course that's not true, but I prefered that John yell at the doctor about it rather than me for a change! A weird thing happened twice last week. John thought people on a zoom meeting, then people on TV, were in the house. I discussed that with the doctor since it was fresh on my mind, and the doctor explained it's a problem of orientation. In the first incidence, John was on a zoom call with friends from high school. They do an online happy hour each weekend and it's really nice to see John connect with him. It always makes him smile. Well last week, he came out of the room after the call ended, and expressed surprise that the guys had left, when he thought they were just there. The next day, we were watching tv, and when the show ended, he wondered where the people had gone. The people on tv. It was kinda spooky to observe his confusion about reality. The other weird thing that happened this week - twice no less - was John took things home that belong to Edna, his 'person' at Easter Seals. On Thursday he picked up her cell phone, thinking it was his, and brought it home. The next day he came home with her work keys! So we're teasing him about stealing Edna's stuff! I guess we need to check his pockets before he leaves Easter Seals every day!

September 6, 2020

The Easter Seals program is going very well. John enjoys it, he gets exercise, and he's involved in many different activities. My mom, however, has tested positive for Covid19. She was moved across the parking lot to the skilled nursing center last week. They tell me that she is stable, on oxygen, and sleeps opten. I've had to withdraw her from Hospice Palliative care, and sign a bizillion forms to enroll her at the skilled nursing facility. A number of nurses have called me and all seem to say she's stable, and likely to be there about a month. If her condition worsens, and she is 'actively dying', then we are allowed to see her. But then of course we'll have to self quarantine and that means I can't go to work. Oh well. I face timed with mom on Friday. She was lying there with her eyes closed and wouldn't respond to me. Well, that is until I asked her if she wanted a cookie. Then she said 'sure'! Fortunately I dropped off a bunch of cookies the day before so the nurse could give her one. I didn't see that though, so I'm not sure how well she's able to eat things like that. I always say that people with Alzheimer's need an exit strategy. If Covid is Mom's exit strategy, I'm fine with that. Frankly I feel that she's languished far too long already and deserves to be in heaven with Dad. So we'll see.