Except for people who are caregivers to an ageing friend or relative (there are many), we don't know much about getting sick in old age and dying – at least, not in the public sphere.
It has been decades since Americans commonly lived in multi-generational households so we don't see the changes, the work, the anxiety, the worry and even the relatively minor but ongoing irritations of keeping an ailing person's body and soul together until time to leave.
In the United States, we keep most of this stuff private, unmentionable, as though it is not fit for discussion in polite company. Even in what is now, arguably, the worst period of time during our lives, the Americans really do insist on behaving like Good Time Charlies about old age and health.
And that doesn't help anything.
I could apply those thoughts to our current political/virus/POTUS situation, but I would rather be personal today. Although it has been building for awhile, I realized recently that I haven't been this busy since I worked full time.
Hardly an hour passes in each day where there is not a requirement to attend to the treatment or maintenance of my diseases. From comments over the years, I know I am not alone in these procedures so feel free to join in below.
It starts when I wake in the early morning. Sometimes it feels like I can't find the energy to go through the morning readiness ritual. I feel weak, sometimes I think my legs are shaky. They are not, but they feel that way. I work through it.
Wandering slowly into the kitchen, I start the water for coffee, count out the first three pills (two for pain before it appears, one related to breathing). Then I set up the nebulizer – 10 minutes of breathing an infusion that gets my bronchial tubes working.
That finished, coffee is ready and I settle in at the computer to check email, news, the day's to-do list. If taking out the trash and going to the mailbox are on the agenda, I remind myself do it following the 2PM nebulizer treatment – I can walk more easily for a short time then.
Sometimes there is a morning phone call with a friend, always welcome. I drink coffee, think about breakfast and sort out the pills related to food and digestion that need to accompany meals.
Sometimes now, I lie down for half an hour after breakfast, using supplemental oxygen while I rest. By then, it is almost 10AM and time for the next nebulizer treatment.
One morning a week, my hospice nurse comes by to consult with how I'm doing, offer suggestions, order medications and generally have a nice visit. Every two weeks, the social worker comes by one morning.
By then I am alert and active enough to think about writing the next blog post. Or, at least, make some notes for it.
Whatever I'm doing at the desk, in the kitchen, with the paraphernalia of my disease maintenance or household chores, I am careful to keep a tidy area around it all because it takes so long and so much of my reduced energy to clean up if I let it go beyond what mess I can make in about 10 minutes.
Sometime in the morning, I check my supplies of medications to see what is getting low. Hospice supplies them now but I need to track my needs for them.
After the 10AM infusion, I'm ready for some serious blog work or household accounting or some other boring but necessary chores of life. As the time ticks by, I'm keeping an eye on the clock for my noon pain pills followed by lunch.
Eating now has its own complications in terms of appetite and, sometimes, pain. If I get off schedule, I'll not eat at all and after a lifetime of fighting the same excess 10 or 15 pounds, I am now in more danger of too much weight loss. I don't think my thighs have been this small since I was 12.
From somewhere around noon until 4PM is my golden time. I mostly feel good, am pain-free, can feel a decent amount of energy flowing and can get a lot of writing or any other kind of non-physical work done. It's also when I take out trash and check the mail – my short walk of the day.
From then on, I'm slow. I might take a nap. Mostly, I lose track of time during these couple of hours. I might walk back to bedroom and then see that 20 minutes have passed when all I did was pick up a book I left there. I never have any idea what happens to that much time.
Six o'clock brings dinner, more pain and other pills, another nebulizer treatment and I am finished for the day.
It strikes me that this is an incredibly boring inventory of one sick-old-woman's daily life - yet there is plenty I have omitted. There is hardly any time left for me to just be.
One of the larger considerations in recent weeks as the daily chores have increased, is wondering when I make time to consider those end-of-life drugs sitting in a cupboard across the room.
When what seems now so long ago that I decided to take that route to my death, I don't believe I understood how difficult it would be to choose the time – I thought I would just know.
Of course, I wasn't nearly as weak and sick then as I am now. I hadn't even considered that I could feel fatigue so deeply as I do sometimes.
Nevertheless, it is the route I have chosen. There is not an option, like my mother had, to just stay in bed until I expire. There is no me to take care of me in that circumstance as I did for her.
All the medical professionals I have talked with about this, all of whom have been present at patients' use of the drugs, tell me they believe each one chose the right time. For several months I have trusted them in this. Right now, today, I am not so sure I will do that well.
Meanwhile, I am so damned busy.