Dear 2022 Anna
It is hard to imagine how you survived those two hospitalizations near the end of Stuart’s Alzheimer’s journey. I know those memories leave you second guessing. That somehow, you should’ve made different or better decisions.
If I could be there with you in 2022, I would hold you tight. Tell you what a great job you did under soul crushing conditions. You never lost sight of your core mission—to take the best possible care of Stu. You clearly adored him, even when his diseased brain took him to dark and humiliating places.
In that moment on the phone when you got the call Stu was having signs of a stroke, you knew stroke was an acute event. Data popped into your head. Eighty percent of strokes are caused by clots, the other 20% by bleeds. Once they ruled out a bleed, a clotbuster, given in a short window of time, would give him a good chance of being back to “normal.” Your daughter-in-law Marie asked if she should call 911. After the slightest hesitancy, you said yes.
At the time, he still knew you, still enjoyed dinners with the family, you still worked on jigsaw puzzles together, and he still held you in his arms at night.
I know it is easy for me to see that from three years out, but it was the right call.
When By the time you got to the house, four big guys from the fire department had crowded in into the mother-in-law apartment you remodeled in your son’s trilevel home. The medic was on the radio to the local ER and had already given him aspirin. You pointed to the POLST form on the refrigerator indicating no CPR. The medic asked both you and Stu if you wanted to go to the ER. You both said yes. Your nurse spidey-sense and your husband’s gut response were synchronized. As was often the case in your relationship.
But you had a friend who was an ER nurse, so so you knew staffing issues from COVID persisted., But that was just background noise. You were focused on Stu. He had that frightened and confused look in his eyes that broke your heart. Plus, there was no way you could have foreseen what would happen once the two of you were on the healthcare system conveyor belt.
Coming in by ambulance as a suspected stroke, he was taken back directly, bypassing a crowded waiting room. The ER doctor came in shortly to examine him and found all his stroke symptoms had resolved. The aspirin had worked! You felt like you could breathe easier.
He was sent to the CT scanner where they confirmed no bleedbleed. And because the symptoms resolved, no need for the clotbuster. What happened next plays out in your head as a missed opportunity to rewrite the story of Stu’s last days. The docER doctor came back and recommended an ultrasound of his carotid arteries since he was “already here..” As if that choice was offered as a convenience.
You so wish you would’ve taken him home at that point in the story. But hindsight is 20/20, and that kind of magical thinking is rarely useful.
Stu was foggy at that point which is common after a transient ischemic attack. You tried to follow the logic of the recommendations in your nurse brain, while bending that logic toward helping your husband be okay a little bit longer. It was the job of the professionals in the room to coordinate the treatment plan, incorporating what was important to Stu.
Did the ER doc give a thought to whether Stu would want to do anything about it if there was a problem with his carotids? Probably not. After all, it was the next thing on the stroke algorithm. Did you think two or three steps ahead on that algorithm? No.
And you ask why not?
Oh Anna, it’s so easy for me to see why not in 2025. You were exhausted from full time caregiving and trying to hold down a part-time job to keep health insurance. Overwhelmed with relief that the symptoms resolved and that he wasn’t going to die that day. The situation so consistent with the rollercoaster emotions omnipresent for dementia caregivers, on the heels of relief came the scary news that one carotid was “completely blocked” and the other “80%” blocked. The ER doc recommended a consult with the vascular surgeon. He explained these blockages were managed with non-invasive stent procedures, not big open surgeries.
There was no conversation focused on other options. But from where I sit now, the emergency had passed, and it was clear he had developed collateral circulation (blood vessels that detoured around the blockage). Meaning that doctor could have discussed that he was at high risk for a stroke, but perhaps he could be put on an aspirin regimen and rely on the collateral circulation to do what it had clearly been doing for years.
More glaring was that there was no hint of recognition that Stu’s major medical condition was Alzheimer’s Disease, well into the moderate stage. That should have triggered the need for the critical but difficult discussion around goals of care. The very clinical skillset you practiced at the bedside for years.
HOW COULD YOU NOT BRING IT UP AND ASK WHAT THE OTHER OPTIONS WERE?
Because that was not your job! That was the doctor’s job!
Stu’s medical records were at his fingertips. That was one of the reasons you selected his primary care doctor from the organization that ran the hospital. At the very least he could have given the two of you the option to follow-up with the vascular surgeon as an outpatient.
But the conveyer belt was in motion. Stu was seen by a kind vascular surgeon who reassured us the procedure was safe and indicated. surgeon He was admitted him to the hospital. After Stu settled in, the nurse came in and said you would have to leave because visiting was limited to one person per day and 4 hours max. Her young face was lined and pale, as if she had been without sleep or sunlight for days. You just stared at her.
The sounds in the hallway seemed to mute. The staff in white coats passing the doorway moved in slow motion. The density of the air moving in and out of your chest felt thick. You felt light-headed.
Somehow you managed to say, “but my husband has Alzheimer’s,” before tears began to well up. Seconds passed as you struggled to push through.
“I can’t leave him overnight. He will get confused and try to get out of bed. He has been falling at home because he forgets to use his walker.” Pain now danced across your forehead.
“We’ll take good care of your husband Mrs. Du Pen. I’m very sorry, but these rules are mandated by the state,” she said.
HOW COULD YOU NOT REMEMBER THAT COVID PRECAUTIONS WERE STILL IN PLACE?
You were in survival mode, that’s how. The fight or flight response, but let’s just add on physical, mental, and emotional exhaustion. Not only was adrenaline being pumped into your system, but the overwhelming exhaustion inhibited your ability to think straight.
Despite all of that, you were able to make the case to the nursing supervisor that there was not enough staff to prevent Stu from falling in his confused condition. That you were an RN fully trained in COVID precautions and it was clear there was not having enough staff to keep him safe. They caved, but only after you had the physician write an order in the chart.
What followed was a week-long hospitalization. The surgeon only did the procedure one day a week—Thursday. He was admitted on Monday. You slept on the hard windowsill in his room and got dirty looks from the staff. “His wife’s a nurse,” they would whisper.
After the stent was placed, he went on blood thinners—which must have been discussed but you have no memory of that. Three weeks after he was discharged from the hospital Stu had a GI bleed which led to another weeklong hospitalization.
Stu suffered steep downhill slides in cognitive and physical functioning after each hospitalization.
He would not have another vascular event, but the Stu who came out the other side of those two hospitalizations had far more bad days than good. You blamed yourself.
Oh, honey. From where I sit now, you were amazing in an impossible situation. Here’s how I see it. The culture around dementia care was at work in the hospital—look away because it’s too hard to talk about. The distress dementia caregivers experience with anticipatory grief amplified by the heavy burden of responsibility was and is paralyzing. Top that off with three decades not being even close to enough time to live the extraordinary love story the two of you forged together.
Despite all of that, and against all odds, you manifested his last wish—to die at home and continue sharing a bed with you. Because the most important thing in the world to him was you.
You did great!
Want more like this? Visit Letters from a Caregiver on my colleague Victoria’s Carer Mentor Substack here.
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