And then there was one.

Posted on my birthday, 2024.

1Ki 19:10: And he said, I have been very jealous for the LORD God of hosts: for the children of Israel have forsaken thy covenant, thrown down thine altars, and slain thy prophets with the sword; and I, even I only, am left; and they seek my life, to take it away. (An interesting chapter…book… very worth a read. 🙂 )

It has already been a week since mom passed away. Time marches on. While I appreciate the need to grieve and to “deal with” the loss, it sort of helps me to keep the situation in perspective and let it fuel me into fighting even harder for a cure.

Looking at where we have come since I started writing this blog in 2018, much has changed, but lots remains the same. In fall of 2018, mom was at an early- to mid-stage of the disease. I don’t ever think of stages rigidly because they are different for every case. She was moved to a nursing home memory unit with 17 ladies whom I would go on to refer to as the Sweet 17. All had serious cognitive issues and were flight risks. Fast-forward 6 years and as of a week ago there were two left with us: mom and a lady I refer to as the pseudonym Buffalo Mary. Buffalo Mary is not well and won’t be with us a whole lot longer, and that makes me sad. She had something happen that caused her to completely lose the ability to keep a short-term memory. Not unlike the movie 50 First Dates, or perhaps similar to one of my favorite movies Groundhog Day, she is told every morning her name, that her kids love her and will visit soon, and a bunch of other things. The staff also writes the same info on a whiteboard in her room. She kind of relearns it for a while only to re-forget it the next morning. Her memories are a slippery as a slug in a swimming pool of lard….and it is tragic. However, it doesn’t seem to be degenerative, so she outlasted mom.

There is much that could be said about mom’s last week. It was a microcosm of the previous 6-8 years in some ways, expect mushed down into a little puddle. Take the following outline:

Seizure- a big one, a couple of weeks ago.
Care meeting decides to add a Fentanyl patch because there was pain we were having trouble seeing
Immediately after getting this patch she “woke up”. Her eyes were open every visit, almost in an alarming way. I feel/felt guilty for saying it, but it practically scared me. She would trace us around the room with her eyes perfectly, something she hadn’t done since before COVID (ish). She tried saying things too, with meaning seeming to be attempted. It was a joyfully sad few days.
Then a fat seizure and we had to make the decision that we couldn’t keep her pain free without significant Morphine. She was essentially in a coma and stayed that way through the end.
4 straight days of 24/7 time with her. I slept 4-5 hours in those 4 days. One night we were sure when was going to pass away, but there was pain and sounds and we stepped up the Morphine PRNs again and she settled down., She lived 4 days with an average o2 sat of between 40-60 and a BP extremely low.
We were at our sleep breaking point and my brother got a hotel next door. We left at 11pm with a kiss on the forehead and an I love you to mom as we left, planning on a 3-4 hour sleep and return. She was very stable much of the day, so it seemed “safe” to leave for some quick R&R. Within 20 minutes she breathed her last with none of us hovering over her but all of us connected to her heart. God and/or mom seemed to want to spare us the last few breaths.
Ups and downs. Downs and ups. Such is the disease, even at the end. Unpredictable. Peace. Joy. Un-peace. Un-joy. Loud. Quiet. Sounds of her breathing toward that I had to cognitively force myself to hear as a beautiful aquarium of fish with a bubble treasure chest at the bottom periodically opening to allow its air-filled orbs to ascend. That was how I blocked out what I was hearing, but I will never unheard that.
Then the end. The celebration of life was great. A few small AV issues, but everything was great. Thank you to all who went, to all who would have but couldn’t and for the rest. 🙂 Here is the obit. If you look at the tribute wall, you can see the long video that was made in celebration. LOTS of great pictures and a few videos. VERY happy all of them. 🙂 https://www.meadorsfuneralhome.com/obituaries/Brenda-Jean-Alexander?obId=32217696

So this part of the journey is over. I still owe you a better set of summaries of our Longest Day walking extravaganza, but that seems like ancient history even though it was just a couple of weeks away. I will get more details of it published soon, with a little luck. 🙂

Thank you all for support, encouragement, prayer (!), thoughts, calls, texts, flowers, food, hugs (virtual and in-person) and the rest. You are all amazing.

Am I giving up and throwing my hands up? Nope. There are still nearly 7 million suffering. In the next month I have longitudinal visits at Vanderbilt and Washington University and another interesting diagnostic tool study at KU. I start a new caregiver support group in Houston, Mo this week and have another new one planned next month. You couldn’t make me give up if you tried…until we finally #EndALZ

Update: Heaven. Enough said.

Celebration of life and pre-get-together pix: