January update on mom
I kept meaning to post an entry about Mom over the holidays but the weeks have flown. Mom continued to get stronger physically; her mental status continued to be a problem— she knew her history (not necessarily all of it) and knew the characters in her narrative but her timeline continued to meander.
She asked dad often to take her home and he began to realize that home also meandered. Fair Oaks Street, Falconhurst, Crofton. Or simply home was “not here. “
We almost got Lolly and Paul back forever and I truly grieved the almost position that was not. All of this in November and December with three amazing weeks with the Errickson Family. We all went to Phipps, we watched Christmas Vacation, we shopped, we played games, we watched Football,, we cooked. We opened and started the puzzle but with Paul ill early and Joh wiped out later— Lolly and I weren’t enough to drive puzzle progress. It was an exhausting and wonderful Christmas. And then the Errickson’s went to Buffalo for a few nights (yes. We know no one was trying to get into Buffalo at that time) and I went back to work for 7 days— that part became exhausting by the end of the New Years holiday. No staff. No staff. Too many patients. No staff. Everyone really sick - the diabetic feet were out of control, cancer complications, perforated bowels, bacterial pneumonia after flu, meningitis—- you name the itis? It was on our lists.
Last Thursday with tears and weighted goodbyes Will and I drove the Errickson family to the airport. We had a calm weekend and I spent much of it trying to reclaim my house (socks, dog hair and glasses EVERYWHERE), all the while Johannes going back and forth to help get his mother’s apartment clear (who also had health issues this fall and is unable to live alone now). I spent the week talking to mom’s docs because it really was apparent that the tragedy would not be my mom dying on the OR table as they were trying to reverse the ileostomy (put the bowels back in, successfully reconnected) but my father having a heart attack trying to care for mom. They had wanted to wait until April for surgery.
Yes there is help, yes there are people but planning for a stoma bag and ostomy change is not the same as a pooptastrophe. And as Alzheimer’s disease progresses patients do different things. Some wander with their entire bodies- down the street, out the door…. Luckily for us Mom is not a wander risk but her fingers are. When faced with nothing to do they often pick at her face or at the ostomy bag and stoma itself. When the poop gets out at unplanned times it is impossible not to go into a complete adrenaline fight or flight storm. That is NOT good for my Dad. As of yesterday all of the parties involved in her surgery had agreed that moving her up and reversing her was the safest thing to do- I had spoken with the surgery scheduler on Friday and was really happy to have a date for early February.
Sunday afternoon Mom and Dad watched the phenomenal Steelers game and then came over for dinner. Oskar had been away and he arrived mid-afternoon and the six of us (Will back in Alabama) watched football and Oskar showed Gramzie and Nini his movies and photos from his travels while Amelia and Hazel howled to Alexa’s “fire engine sounds”. Mom had a lovely time.
Mom started to lecture me about how she didn’t want to use the walker to get out the door, that her cane would be better and I just asked if we could please wait until she was off of blood thinners (6 months from the PE) before she went rogue with the cane, “mom can we just get you reversed before we do something else”? I just didn’t want a bleed to complicate her chances for a reversal.
“Well I do want to get rid of this” she replied and pointed to the bag. So matter of factly.
And down the stairs she went with the walker, dad using a flashlight and my spotting her. She really didn’t need much spotting —-she didn’t use the walker as she transferred to the car door. Off they went towards home.
Johannes and I went inside to help Oskar get all of his things together to head back to Pitt—and the landline rang. Dad’s cell. He was in his garage trying to hold mom up, something was wrong. Could I come?
So I grabbed my stethoscope and headed over, Joh behind me. I called dad again, I was coming but was she speaking, was she conscious, should he just call 911- he just wanted me to come and then we could decide.
I arrived to my mom and dad in the floor of the cold garage—- mom with obvious right sided deficits, garbled speech and right sided facial droop. And of course breathing fine, with a normal heart rate… a dear friend again (Susan is a rock star) joined me to asses her but I had already told dad to call 911.
Stable, in the ambulance- a limited code— my gut was to go to my people who knew her and head to St Margaret. I suspected a bleed. (Xarelto). But it was pointed out that her neuro deficits were early that IF she had a clot/thrombus that she was in the therapeutic window for a thrombectomy— a procedure, not a surgery that could reverse the symptoms were it the answer. And that wasn’t going to happen anywhere as quickly as Mercy.
The ambulance pulled into the ED and the stroke team was waiting for us- to CT angiogram in minutes- and an answer in 15- a moderate sized brain bleed on the left side- resulting in complete right sided weakness (not even able to move the right hand that she had used to feed herself only hours before). Dad shared that their car ride home was uneventful, she spoke normally and they talked and then he walked around to the side of the car to open her door and she just somewhat slumped out. That was when it happened. At 8:00 pm. No fall. No trauma. No trigger. Stable/good blood pressure.
Goals? Medicine to reverse the xarelto and hope the bleeding in the brain stops. Strictly manage blood control (but mom’s BP is always low, hypertension has never been an issue for her). Strict NPO. Nothing by mouth. Already I could hear in the garage her saliva trickling down the back of her throat. She wasn’t protecting her airway.
However she is an extremely limited code. Focus on comfort and safety. Asses her and watch. We are in the ICU at Mercy (it is beautiful and the staff are amazing) and she is going for an MRI and then another CT. I am praying that she worsens and slips off unconsciously at peace. Because I don’t see how she ever now will be cleared for an ileostomy reversal, and she now cannot use the right side of her body (she is right hand dominant) AND she is unlikely to be fully able to protect her aiirway and won’t be cleared to eat and drink but she did NOT want any types of feeding tubes (I fully agree) and even if we elect to temporarily place something for a few days to keep her nourished while assessing- she will hate it. She already managed to get her only working arm that had a BP cuff on it- out by slinking backwards and saying no.
She now cannot speak well at all and is having issues with aphasia and word finding- couldn’t identify if a thumb was a thumb or a fork— though she knew the Steelers win. (Thank you Kenny Pickett for making these past few months a delight for her to attempt to watch.) can she follow the game? No. Does she like it? Yes. Does she know who our QB is? Does she know what happened to Damar Hamlin? Yes. Do we have two stuffed bunnies and Daisy 2.0 here? Yes.
Do I think this ends with Mom at home eating and walking again? I do not see how it will be possible. Do I bet on anything regarding my mother? If you know her, you know I am just seeing what happens. Hour by hour. Because with Mom- you just never know.
For now we are stable, at Mercy and dad and I will be home tonight, no one will be sleeping here. Their care is wonderful and we have asked for the palliative teams to help us and the ICU neuro teams in our discussions about what is best for Mom.
