I’ve been offline and generally out of touch with most people for the last month, and while I have a few minutes, I want to post a note about what’s been happening. I’ll forward it to those of Glenn’s friends and family who haven’t had all the details. Please pass it on to anyone I miss.
Glenn did very well after his 2008/2009 hospitalizations, coming home that March and staying home and in excellent health for two years. His dementia slowly deepened, but he managed to stay clear of other illnesses. Last month, he started to feel under the weather. He stayed in bed all day the 18th. I sat him up for meals, but after he ate, he was so tired that he just wanted to lie down again and sleep.
The next morning, I sat him up, and he started coughing up a lot of phlegm. I didn’t want to lay him down again in that state, so I took him out to the kitchen, and he ate a little breakfast. I was watching him and deciding between hospital now and doctor-when-he-opens-tomorrow, when Glenn made the decision for me. He said he was sleepy and wanted to lie down, so I took him to his chair in the living room. He wouldn’t help push himself up like he normally would, then his arms went limp and he stopped responding to me.
The ambulance took him to the emergency room, where he was already on a ventilator when I got in to see him. He was moved up to the Intensive Care Unit after a few hours. It took several days to grow cultures and determine he had three different infections, in his urinary tract, lungs, and bloodstream. By the 22nd, he was opening his eyes and following commands. They tried to wean him off the ventilator the next day, but he only lasted an hour, with great difficulty, before they had to put him back on it. He succeeded in coming off it the following day, and was finally able to say a word or two to the friends who came to visit.
By the 26th, he was scheduled to move to a regular room, but an irregular heart rhythm kept him in place. By the 29th, two of the infections were gone, and the lungs were the only remaining problem. The next day brought great trouble with breathing and a return to the ventilator. He didn’t come off it again until the 6th of July, and moved to a regular room on the 9th. On the 12th, a social worker asked for our rehab center preferences, and started making calls to prepare his placement. On the 15th, he couldn’t breathe again, and was rushed back to the ICU and put back on the ventilator.
The next day, one of the lung doctors told me that if we were going to continue aggressive treatment, Glenn needed to have a tracheostomy, a hole cut in his throat with a tube inserted. He wasn’t strong enough to cough up the infection, and they couldn’t keep him on the ventilator indefinitely. A tracheostomy tube was the only way they could continue suctioning the fluids out. He said it was a simple procedure and it would heal quickly once it was removed, but Glenn would have little or no ability to talk or eat while it was in, and he’d probably have it in (and remain in the hospital) for many more weeks while the infection healed. Even then, the doctor thought it likely Glenn would continue developing new infections, over and over again.
I discussed the situation with Glenn’s sister and friends, and we couldn’t see any good outcome for him. He had to be miserable as he was. I’d only been there during the days, and it was bad enough. Though he slept much of the time, I can only imagine how he’d started to feel during his lucid moments, barely moving for a month and not even eating or drinking (he’d failed all his swallowing tests, and was being tube fed). With his dementia, he wouldn’t be able to understand what was happening and why he was going through it, what we hoped for him at the end. He was growing weaker all the time, and could no longer move his left side. Rehab was going to be a very long haul. His mind was much different than it had been in 2009, and he no longer went along with what people asked him to do. I could be there every day to make sure he did the exercises, but it still seemed likely that the best destination we could hope for after rehab was a nursing home, not his own home, and a life he would never want.
There was also the possibility of an underlying cancer. A CAT scan had shown masses on several of his organs. A later comparison to scans from 2008 showed they’d been there at that time and hadn’t changed much, and so probably weren’t a concern, but couldn’t be ruled out. Even without such a dramatic development down the road, there was always the likelihood that he’d pick up something else after so much time in the hospital and rehab, and he did in rehab in 2009, leading to a second hospitalization.
He’d been through an awful lot, was terribly worn out, and if we were to continue, we’d be sending him down a long road of struggle and suffering with only a small hope of a happy life for him at the end of it. We all decided it was time to stop.
On the 17th, I gave the doctor permission to withdraw care. I called several of Glenn’s friends to explain what was happening and invite them to come see him. Wonderfully, when the nurses withdrew the ventilator tube and other treatments, Glenn woke up and was more alert than he’d been all month. He was able to enjoy his visits and talk with his friends.
The nurses placed him on a morphine drip so he wouldn’t feel any pain or air hunger, and moved him to a comfort care floor. I was able to stay next to him for the next 38 hours until his death. He never showed any signs of distress, he just became sleepier and sleepier. I held his hand all night so he’d wake me if he got into trouble, but he never moved or squeezed.
I woke around 4:00 on the 19th, and he was still breathing lightly. When I woke again at 5:30, he wasn’t moving, and I called the nurse, who called a doctor to pronounce death.
He went peacefully and at perfect ease, all we could ask for. Thanks so much to everyone who’s offered such kind support, and to everyone at Baltimore Washington Medical Center, especially the ICU staff, who were all unfailingly professional, capable, and compassionate.
A memorial service is being planned. In a few weeks, I’ll put something together to post here, as well.