Attending the Dying

Sorry if this topic seems depressing. I just have some processing to do... it will probably come as follows:

Today: My week of helping care
Sunday: My aunt remembered/family
Monday: The origins of hospice
Tuesday: Lynch Syndrome

Then a few normal days and another week or more GONE (settling my aunt's estate, such as it is, in Idaho). I'd love it if you want to share my process, but if you tend to come for nutty, zany Tart, she probably won't be around much until September. This stuff is weighty. It's just how it is. Hospice origins has some humor involved... how is that for strange? But it does... Mostly, though, not so much.

So if you dropped by last week, you already know I went to Phoenix to spend some time with my dying aunt. I have dropped in for last good-byes before. Most notably, in late 2006, my grandmother... the best person the world ever made... died and I believe she waited for me. She'd been sick and going down hill. When I arrived, she had a very good lucid day, then a stroke that night and died the following night.

That happens, you know. There is some matter of control for a lot of people as to when they actually go, though I think it is a power to hang on, rather than a power to let go.

This though, was my first experience at caregiving when someone is dying. I won't pretend to have been the heavy here. My cousin's husband retrieved Merilyn from a hospital in Boise and flew via Angel Flight (a collection of private pilots who volunteer this AMAZING service to get dying people to their families for the end)--they flew her to Phoenix where my cousin then worked tirelessly as caretaker, her husband helping a lot... the hospice people being AMAZING, but only present for 1-2 hours most days. If you have a loved one in the Phoenix area who needs hospice, I can say Hearts for Hospice is phenomenal. Our nurse, our CNA, there was a social worker and a chaplain... seriously—they took such good care of all of us.

But dying is a moving target.

Part of it is that doctors give these bizarro world false positive possibilities, so Merilyn had told me 'up to three months' when in reality, it was two weeks from that conversation with her until she passed (which happened Tuesday evening, but I will get there). Nurses are MUCH more accurate reporters. Believe in your nurses. Seriously.


The Trip

So I flew to Phoenix last Thursday. My cousin picked me up at the airport. And I got... two really good days with my aunt. By good I mean, she didn't feel very well, but she was lucid, knew me, knew I was there. She was a pill... kept insisting she had to get up when in fact she didn't (all tubed up to avoid all that) and every time she talked someone into it (we each fell for it at least once) it was a ton of work and made her so tired... We really had to tag team the care as SOMEONE needed to be near ALL the time for fear of her hurting herself (she got up a few times when no one was in the room—that was REALLY bad, though thankfully no falls). There were hourly adjustment to her person to get her more comfortable (head up, head down, knees up, onto side), semi-hourly medications for pain, anxiety... among other things... This piece... the real WORK OF IT, I had never done before. And NONE of us expected it would take as much. My cousin's husband had even done this before, but I think her particular cancer made for a lot more restlessness.

And I was SO GLAD to be there to help out, both for feeling like I was helping my aunt, and because it was way too much for my cousin to do all of it. It was so amazing of her to open her home and say 'we'll do it' but it is too big a job for one couple. It just is. At least if it doesn't go fast.

The hard part (other than the sleep deprivation) is watching someone you love hurting. She had a cancer than began simultaneously in colon and uterus and the tumors were very fast-growing, cutting off this and that from passing where they should. She had pain medications... three of them initially. But the state of Arizona worries about overdosing, even when someone is dying and would probably appreciate it. I have little patience for this. My time in Oregon made me a believer in the death with dignity idea—a person who knows they have a short time and is in a lot of pain can take great comfort from knowing if it gets to point X, then I can just take these pills and go to sleep forever and be done with it. We are honestly more humane with our animals than with our people.

Not that we had the exact conversation with Merilyn... since it wasn't possible and all. But on Sunday, she said separately to each of us that she was ready and wanted to go. By Monday she was no longer coherent, her body was spasming and gasping... but was NOT yet dying. Tell me. WHY do 49 states not let a person who would like to go GO at this point. Pain. No positive interaction. No body control. I don't really understand.

Sunday we switched the pills to liquid medications, as she couldn't swallow anymore... and by Monday, she couldn't take the liquid, either, except the few that were tiny dose and would absorb under the tongue. And she got that fever... see... if a body isn't passing the toxins out, an infection can set in. Though it might ALSO be that her body temperature regulation just was early on the system failure list. The nurse said both were possible. So we added cool towels to the helplessness...

On Tuesday I had to fly back to Michigan. I left about 10:30 in the morning. Said my good-byes before I left. Cried with my cousin a bit. Then flew home. Merilyn passed at 7:30 that night.

Now all of that might sound like it was horrible, and honestly, it wasn't at all. I would have rather been there than anywhere else. Certainly above being at home worrying about what I wasn't doing to help. I just wanted to express that there are times we pitch in, and it isn't some romantic call of sitting and hand holding. But it is so crucial. Crucial to have the people attending us be people who love us. Crucial to have people around us who have us as a priority (as opposed to a facility with LOTS of patients). And it ISN'T one... if your brother says 'oh, I can do it' that your brother should then be expected to take on alone. It is NOT a one-person task. In fact ideally, everyone who can pitches in. Spread it out. Then everyone gets the time, everyone gets the closure, everyone gives a little and nobody feels over burdened.

I will talk a lot more about family on Sunday, but I think this act of sharing the care has helped my cousin and I a lot—we are more than six years apart in age and have only rarely lived in the same place. It was good for us to do this. Good for what we could do for our aunt and good for our relationship as family. We lost an aunt, but maybe aren't as alone as we thought we'd be from it.

Have you had any growing experiences from loss?