So by chance on Feb 7, 2018 I opened wordpress to take a look at this blog, and it was exactly a year since my first post. So I decided to write up what has happened this past year:
I completed the Data Visualization Using Tableau specialization (5 Coursera courses), and studied Salesforce using Trailhead on the Developer track up to and including the section on Security.
But by July, my medical assistance hours with the gentleman who was ailing had increased radically. I was still taking photos of nature around me, like this one of Cascadilla Falls, but my time and energy was being called upon more and more.
Here’s the story: In the beginning I thought I would be helping him to navigate the medical system (we had previously helped him to get signed up for Medicare, a prescription drug plan, and a high-deductible supplemental policy), being an ally, taking notes at doctor visits, etc. However, the first thing we did In early June was take him to the emergency room with a bronchial infection, and he was diagnosed with COPD and got set up with oxygen.
He also had bad back and side pain with spasms, hard to tell what was causing it, so I was doing additional research on-line to come up with tests his doctor could order. And then in early July we took him again to the emergency room. And his pain just got steadily worse and worse, so that by September I was looking around for who could help take care of him at home (since he really wanted to be able to stay at home).
He needed a presence in the house, and I was getting worn out being the only one showing up daily to cook, give him meds, take him to appointments, plus pay the bills. Basically this was a crash course in what an immediate family member is often doing for the sick spouse, child, grandparent. Luckily my next-door-neighbor is a nurse, and she was able to recommend a delightful home health care aide/housekeeper, who made all the difference. However by October he needed round-the-clock care because he couldn’t take meds on his own (at one point he apparently took 24 hours’ worth of pain meds at one go, although we found some on the floor so not as bad as we originally thought!)
After attempting to sign up with local agencies and finding out no home health care aides were available, instead I set him up as a private-pay employer, and managed to find additional helpers: a nurse, 2 nursing students, and several home health aides. I was now acting as a manager for this team of caregivers! And luckily one of the nursing students was able to be my assistant manager (doing the scheduling and creating a medication record, filling the pill boxes).
I also got him hooked up with the Pain Clinic, because the increasing amounts of pain meds he was needing was making his primary care physician uncomfortable. He also tried medical marijuana (newly available in NYS for pain!), but it changed his personality into a very mean person, and also gave him bad waking nightmares. Not good. And didn’t really do great things for his pain, either, which just kept getting overall worse, so that going anywhere for appointments was filled with agony that would not subside until he was back home lying in bed.
In November I took him to the emergency room again, and a wonderful doctor spoke to him about Hospicare, and gave him the frank news about his COPD being advanced, and that he was not a candidate for any treatment that might be suggested for his back/side pain (if a cause could ever be found) because of the bad shape he was in from the COPD. The doctor told him of course he didn’t know how long he had, but that it was not 5 years. 2 years at the most, but could be much less, so to start thinking about how he wanted to spend his last days, whenever they might come. If he wanted to be in the hospital, then continue the way he was continuing. If he wanted to stay at home, then start considering getting signed up for hospice care.
December 5th he signed up for hospice care in order to get better pain management at home without having to go to appointments. He had by now lost a lot of weight — from 125 in June, down to 83 by late November. So he qualified for hospice based on weight loss and advanced COPD. He kept getting worse and worse, yet still wanted to believe he would recover!
On Christmas Day he slept quite a bit, in fact I could not rouse him even when shaking him (but I didn’t want to cause him pain either!), but when he woke up I played violin for him and his friend who had come to spend some of that day with him. I played a Name Music I had composed for him, and I did my vocal/violin duet piece “Hymn in D”. He wanted me to play the violin right into the pain in his back, and I told him I would do my best.
The next day day, I fell down our basement stairs, came down with a bad cold, and went to the first ever “staff” meeting up at the man’s house. He couldn’t hear us perhaps having the meeting in study, but perhaps he could sense our loyal and steadfast energy, committing to take his lead and behave as he wanted us to including helping him to recover if that is what he wanted. Maybe that was what let him finally “let go”, knowing we were all going to be on his page, whatever that page might be. He had changed by the time we ended the meeting — although he was pretty lucid he was not talking — he would answer questions by nodding or shaking his head, and would raise his eyebrows to say he had heard his sisters voice over the phone, his best friend’s voice saying “good bye”.
His body, in the end, was leading the way in a very natural and animal-like process, it felt like. And his mind was aligning with what his body needed to do. Although I left to go home about 9pm, I felt connected to him even while trying to go to sleep that night after taking lots of advil for the pain in my forearms. I heard later from the 3 caregivers who stayed with him that he had a peaceful and pain-free passing, late that night, and that it remained full of activity — even in the last hour he would sit up to be taken to the nearby commode while his eyes remained closed.
Later when I was telling the social worker about his passing, she said “Well that really re-defines what is meant by ‘actively dying’ doesn’t it?” His passing was as unique and memorable as his personality was, his death very much of a piece with his life. I find comfort in that.