Recalibrating, recalculating
With my last update, mom had improved in the ICU, was safe enough on oral medications to go home. That last night in the ICU before she left, Dad had thought that maybe this time he would be able to go home and get a night sleep in his bed as I had spent the previous night at Mom‘s side (we have to alternate). I advised Dad to stay through the “witching” hour —and see what happens . Sundowning often begins during the daylight. It’s the same time that little kids get hungry, that after-school-before-dinner time when you’re trying to get kids through homework and cook dinner, grab people from various sports that need to be picked up and everyone is screaming and crying. It’s the same crazy time in the hospital. And, of course, Mom pulled her IV out and Dad decided to stay.
That next morning remarkably my mother was bright, and much more oriented. She was transitioned to oral anticoagulation. She was off of oxygen. She weakly wheeled around the ICU with her walker with therapy. She was not making any Land Speed records but she was moving. At that point though it was a quick admission for such a significant clot burden, it was safer to have her at home, much more oriented than it was for her to be in the ICU. And of course it was much better for me. I promise to sleep in the house, sleeping in the ICU had a high beep to sleep ratio, disproportionate to good sleep.
At home she was exhausted, barely able to get into the door. She sat in her red chair for two hours, ate very well and we then got her back to her bed, emptied her stoma, gave her her evening meds and to sleep she went. By this point she was too tired to do anything more than use a bedside bathroom and with that she needed the assistance of both of us. I had worries about her falling in the middle of the night.
The following two days were stable. Her vitals held, she took her medicines, but she was very weak. With every visit, my brain was constantly going through the goals of our care. What were the things that we could do to make her better, what were the things that were going to prolong suffering, what sort of recovery was her brain going to make on its continuous download spiral deep into Alzheimer’s dementia.
On Thursday I came home from work and prepared to head to the airport to get my sister. As Joh and I stood in the kitchen and I prepared to reheat some soup for dinner, the phone rang; it was my dad, Mom was again on the ground and he couldn’t get her up.
At this point we both dashed over as I had to go get Lolly and we both obviously needed to assess mom. Dad assured me that she was fine, just unable to get up. She was eating dinner on the floor. When I got there she was mentating but so weak. She simply could not muster any strength to help get herself up. Though petite, she was deadweight. I watched my husband scoop my mother up in his arms like a child, and place her on the bed. Unlike the Sunday night when she collapsed –her vital signs were completely stable. And, with that, we tucked her into bed, got her some fluids and I headed to the airport.
As I drove to the airport I went through a checklist in my brain— recognizing mom as failing to thrive. In these situations you are best to acknowledge the body and its efforts, and honor it’s work but there is not doubt of death’s presence. I called a friend thinking that if things did go poorly I wanted to make sure somebody remembered to fetch my child from Alabama. As soon as I heard her voice, I was completely unprepared for my emotional outburst. I sobbed into the phone, sharing just all that it happened. Thinking we are heading towards comfort measures and presuming I would be planning a funeral in the next two weeks.
It was wonderful to get Lolly at the airport, drive back, and it wasn’t long before Lolly came into the kitchen after being with my parents, watching mom with her cats, her confusion and commenting “what are we doing?”. That is always the question.
Mom’s brain– a brain that minored in Russian literature– could no longer follow the plot of a Hallmark holiday movie. Despite all of her attempts she is unable to read anything and retain it. Her comment is that a text or plot is “ dumb or stupid” simply because she cannot follow. We sat in her bedroom that night, Johannes playing the guitar, Lolly, Dad and I talking with her.
Over the next few days, Mom did very little. She spent much of her day in bed, her biggest activity was going to the bedside commode. She usually needed the assistance of at least two people for her few steps to that bedside commode. My cousin visited, Oskar and Topher came out for an evening. The house was full of people talking, cooking, writing. My sister and I both felt that we were nearing the end of what we were defining as recovery.
In the midst of this Johannes’ mother who has also been dealing with dementia ended up in the ED (she is also local) and we rushed out to see her. She is now, as a result of this last hospitalization, unable to live alone any longer. This was not her plan; and certainly having mothers with dementia competing in their downward spiral is not ours.
Johannes carried both my mom and his mom and his arms in the same manner within four days.
By Monday morning my sister texted me “I think we need to call it“-- meaning that maybe we need to stop calling this recovery and simply honor what Mom’s body is really doing. Listening to her body, in bed, unable to do very much. Memory gone, advanced dementia, bruising everywhere, heart and lungs now burdened by the clots, permanent damage done, her bones tired, nerves sore, abdomen with one of its organs hanging in a pouch fastened to her skin. I was at least able to talk to an agency for when we need hospice, and talked to different teams involved in her care. I talked with some of my closest and dearest medical colleagues, got my bearings. Took a deep breath.
And then, three hours later, Lolly sent me a text with an image of mom in the chair in her bedroom— smiling (still with a flat affect).
And the reanalysis, the recalibration that happens when your GPS doesn’t know exactly where you? It began again. Recalculating.
Mom is getting stronger. She is now moving with her walker, however the woman that went into the hospital on Sunday night a week and a half ago is a very different woman than the one who came out. The damage, like having a heart attack without disease vessels, that the clots did to her body may not be something that she can rehab from. There were changes on her EKG, there were changes to her heart and lungs. And her brain already was giving us problems.
And so we take each day one at a time, enjoy the moments that are funny, enjoy the dark humor, comment on how much dying people are doing with nonstop references to the Princess bride’s Miracle Max. “ mostly dead is not completely dead.“ And we go about our days.
We will continue to watch her favorite bunny and kitten videos, talk to her real cats, stuffed cat and new stuffed bunny, attempt to follow a type narrative on a page, forget where people live, what year it is, what season it is but recall most details of the World Series games that she attended in her youth.
She loves when people play the guitar in her room And she’s constantly watching the photo frame in her room.
We have caregivers most days of the week, and the meal train continues to support mom and dad. This is a lot for him. It’s a lot for us all. Lolly will leave on Friday night and we will again be without an extra layer of support. She’s nervous to go. Dad is tired, really tired. And, I seem to be in constant re-calibration mode. That little wheel just keeps on spinning as I’m routed and re-routed unable to see any destination. Recalculating.
