Glenn at rest
20 Jul 2011 5 Comments
in partners
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.
Medicare: Pick a drug plan this week
24 Dec 2010 Leave a Comment
in finance, partners, technology
[Executive summary: If you know anyone using a Medicare Prescription Drug Plan, point them to https://medicare.gov/find-a-plan/ this week.]
Nelson Minar recently gave an example of government agencies beginning to catch up with the private sector with regard to web services. I’ll offer another, not so fancy (though plenty of AJAX is on display), but very powerful in taking a numbingly complicated set of data and turning it into a simple presentation of options for decision making.
Our pharmacy attached a note to one of Glenn’s prescriptions recently pointing us to https://medicare.gov/find-a-plan/. People who use Medicare Prescription Drug Plans (which is most Americans over 65) are only able to change plans without paying a penalty between November 15th and December 31st of each year (though the dates are changing next year), so now’s the time to double-check the bang you’re getting for your buck. Unfortunately, a lot of people want to sell you coverage, with a great many variables.
Each plan has a different monthly premium and a different deductible. Each puts different drugs into different price tiers, doesn’t cover some drugs, and limits the quantity or places other restrictions on other drugs. Some require that you use specific pharmacies or contact them for prior authorization of certain drugs. Some will charge you less if you get a 90-day supply instead of a 30-day supply, or if you use a mail-order pharmacy. Each covers each specific drug at different levels during the initial coverage period, the coverage gap, and the catastrophic coverage period. If you take certain drugs year-round, you need to project whether (and when) their cost will push you into the coverage gap, what you’ll pay for each drug during that period, how long that will cause the gap to last, and how much you’ll pay for each for the remainder of the year if you pass into the catastrophic period.
There are 41 plans currently available to us. You can imagine what happens when you start multiplying the previous paragraph 41 times.
Medicare has done a beautiful job of crafting a site which boils the whole process down to lump sum numbers for a quick overview and clearly displays the details for thorough comparisons.
In exchange for some personal identification data, they will look up your current coverage. You can optionally enter a list of the drugs you take with dosages and frequencies (and save the list for future visits), then choose your preferred pharmacies (with Google Maps integration). A number of filters can be placed on the results (premium limits, special needs, etc.). A chart gives the highlights of the options, with the total estimated annual cost for each front and center and Medicare’s own ratings of (and, in some cases, warnings about) plans prominent. You can pass on to the full details of each plan, or choose 2-3 for side-by-side comparison.
The reports are neat and clear, with a good combination of inline explanations and popup definitions for more technical points. If you’re not grateful for what’s been done here after viewing the breakdown of all the details which go into constructing the total estimated costs, I don’t know what would impress you. You could spend days crafting spreadsheets to reach the numbers they give you in seconds, and still miss many of the finer points which could be critical to your decision.
When you find a plan you want, a single click starts the enrollment process. I haven’t made a decision yet, but from a first look, it seems we’ll be able to move to a higher-rated plan which will cost us $800 less next year.
As I said, the open enrollment period ends on 12/31, so if you or someone you know uses Medicare, take the time to take a look.
They also have a section which provides the same service for Medigap policies. This is an even more time-critical decision, as there’s only a once-in-a-lifetime open enrollment period during which insurers are legally required to sell you the Medigap plan of your choice, the six months after you’re both 65+ and covered by Medicare Part B. If you know Americans around that age, be sure to point them at Medicare’s site and their Medigap information booklet.
glenn's memories… complete
06 Nov 2009 Leave a Comment
in partners
we received the second batch of photos from scancafe, and i’ve put them all online. between the scanned photos and the digital ones, the whole collection’s come to 196 photos, from turn-of-the-last-century portraits of glenn’s family through today:
http://www.flickr.com/photos/jeffcovey/collections/72157618141157349/
i hope you enjoy them!
we bought a digital photo frame a few weeks ago, and i’ve been loading photos onto it and keeping it by glenn’s bed. it’s been wonderful asset. in addition to making an extra night light, it gives him a constant stream of happy recollections. i’d highly recommend one for anyone with short-term memory problems. it seems to act as both a comfort and a means of exercising more secure, entrenched long-term memories. as glenn grows more frightened of not having a firm grasp on what’s happening today, he seems reassured when he can accurately reminisce about the past.
thanks as always to everyone who’s checked on us and kept us in mind.
glenn's memories
17 Sep 2009 1 Comment
in partners
after my digitizing last winter, i decided to do the same for glenn’s photos. i got them all together and shipped half of them to scancafe (so we would have the other half in the meantime). i plan to get a digital photo frame (suggestions welcome!) so glenn can see a slideshow of them anytime.
the first batch just came back to us, and i’ve put them on flickr. using information written on the back of a few of them and what glenn can remember, i’ve tried to identify them and set dates and locations for them where possible. you’ll find them here:
http://www.flickr.com/photos/jeffcovey/collections/72157618141157349/
enjoy! and let me know if you have any more information about any of them.
poems i’ve written since dan’s been gone
12 Jun 1998 2 Comments
the robe
winter is pressing in through the walls.
i can’t find any of my clothes,
but i found your robe today
in the pile of laundry still unsorted
eight months after you washed it.
i’d forgotten it. how could i have,
after the thousands of times
i held you through it?
i put it on;
why is it so much colder
from the other side?
where you are
you’re in my thoughts, my day,
in my rising and the empty half of the bed.
you’re in the silence on the phone,
in a smile i haven’t seen for two years.
you’re in a walk through the park,
feeding the geese stale bread.
you’re in an empty chair beside me
at a café, a movie, and a play.
you’re in friends we met together,
in the words you said to them,
at the checkout where they knew you by name
but never asked me where you went.
you’re on the street,
you’re on the train,
you’re at the hospital and the church.
you’re inescapable,
and standing still i can’t find you.
the only place you’re not
is in my arms.
— 6/12/1998
