Friday, August 10, 2012

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?


Old Kitty said...

I am so sorry Hart for the loss of your beautiful aunt. I spent 3 months watching my sister die. It's never pleasant and compounded with how we had to fight various hospitals and doctors and bureaucracy to get her the best care possible.

I don't know if I took anything from this experience. I only know disease is evil and unfair.

My sincerest condolences to your family.

Take care

Alex J. Cavanaugh said...

I am so sorry for your loss, Hart. Your willingness to help your aunt and your cousin was just amazing. Hardest thing in the world is to be around someone who is dying, but that is when they need us the most. That you were there for her final days is precious.
I was the last grandkid to visit my grandmother a few years ago. The day after my visit, she went off dialysis and died a week later. She waited for me.

L. Diane Wolfe said...

You did far more than I could've managed. Really sorry about your aunt. Your cousin will be forever grateful you were there to help, though.

Carol Kilgore said...

I'm so sorry for your loss. Death is never easy. You postively did the right thing for everyone, including yourself.

Megan Bostic said...

Hart, I'm so sorry for your loss. You've probably heard the story of my mother-in-law a million times now, but I will always sing the praises of hospice and will be thankful that my husband and I made the choice to bring his mother into our home rather than let her be sent to a nursing home.

And I agree, listen to the nurse's. The doctors told us 6 months to a year and she was with us less than three weeks.

Your flying out there and being with you aunt in her last days was a benefit for both of you, even though, yeah, it can be hard work, and yeah, it is very sad, but it is also a very rewarding and peaceful experience.

Elizabeth Spann Craig/Riley Adams said...

Hart, I'm so sorry to hear this! Hugs to you and your family. I know your aunt was so glad to have you there.

I have had some experiences similar to what you've gone through and totally agree with what you said about nurses knowing better than the doctors about timing.

mshatch said...

Hart I'm very sorry your Aunt is gone. I've never had to go through anything like that although I did work in a nursing home which was very sad most of the time. I'm glad you were there for your Aunt.

And yes, my mom's a nurse and sometimes those doctors aren't as smart as they're supposed to be.

Arlee Bird said...

Sorry for this loss and I can certainly understand.

I was with my father until his passing in 1990. I was grateful to have time to let him know how I felt about him and to thank him for all he did. My entire family was by his side as his soul departed as he lie in his hospital bed.

Last year my sisters husband passed from the same kind of cancer as my father. He was in Phoenix, which allowed us to be able to drive over from L.A. a couple of times to visit him. He was such a dear friend to me and only 67 when he died--the same age that my father was.

My prayers are with you. Death can be such an emotional time and a time for reflection.

Tossing It Out

Summertime Rose said...

I'm glad you did what you did, Hart.

It makes you a part of the process, and you feel that you helped her transition as smoothly as you could.

Our right to death is as fundamental a human right as our right to life.

I agree that government and/or religion should have NO place in our decision to euthanize a terminally ill person who wishes to go on his or her own terms. What we do is unimaginably barbaric.

I lead my father through a three year dying process. I wrote a very short piece about it at It's called "Fatboy's Ticket to Heaven". I hope it helps you, now. You all did right by her.

My dad had to be in a nursing home for a short period. But everyone knew I would pop in at all hours, to check on him, and show up with dinner, as often as he'd allow me. I spent many hours on most days, just sitting beside him, as he dozed. He knew I was there. And, if I wasn't, and he had a problem, he had a mobile phone to call me, and I'd be there in five minutes to fix it.

We shouldn't have to die the way we do. It could be done with infinite more calm and dignity. But we die, and if our loved ones do their best to do whatever they can to make it go smoothly, it's okay, in the end.

Lisa Golden said...

Loss and gain in a truly selfless act. You did me a service by sharing this. I've been so shielded from death that I have no idea how I'll be when the time comes. I could see myself drawing on your words some day - "it is so crucial......"

My condolences on the loss of your aunt.

Oregon Gifts of Comfort and Joy said...

Oh, Hart, you are such a good person. I am so glad that you were able to be there for everybody.

Yes, I have had some experience with stuff like this. My Gr. T. died of cancer at home, with Hospice and family. So did Cary's Dad, and Grandma (she didn't have cancer though, her heart was bad at 98).

Gr. T. died on her 88th birthday. Troy died on his wedding anniversary (he had us buy roses for Cary's mom ... and we gave them to her a day early, which freaked him out as he thought he had lost track of days). Cary's Grandma Pearl died because we were all there and she figured that was a good time to go.

I helped our Hospice nurse (and friend) change both Troy and Grandma Pearl into fresh pj's before the coroner took them away.

It is amazing to me what people can do ... more amazing on how long that they can live instead of when they decide to die.

Cary's Mom says that when it is her turn to just take her to the vet and give her a shot. I really do understand what you are saying there.

I look forward to reading your other posts about this.

Hugs and prayers to you all,

Kathy M.

Hart Johnson said...

Thank you so much, friends.

Kitty-I think a sister would be devastating and I hear you on fighting those hospitals! Man, I hate that we have to do that.

Alex-that's amazing how people will sometimes wait, isn't it?

Diane-you might be surprised what you can do when you need to.

Carol-thank you!

Megan-I think it's wonderful you did what you did for your mother-in-law. And you're right, it really CAN be rewarding.

Elizabeth-thank you!

M-working to help people who have no one, or whose people can't house them is crucial, too!

Lee-that was great to be there for your dad. I think our presence is always important.

Rose-I think sometimes that can work best--if we live somewhere we can't care well, or if we need help--being someplace but having that loved one present.

Lisa-Strangely, I've seen a lot of death. I was born to a young family, so several generations still present and have watched them go. it's sad, but it is something you learn from.

Kathy-that's wonderful to have been there for all those people. I think it happens more often when we are near, but it is always important.

Alison DeLuca said...

As I watched my mother pass away from Alzheimer's last year, I wished I could have eased the process for her. It was simply horrifying to see such a literate, brilliant woman lose her bright spark and fade away. And her anger throughout was epic. And I can't blame her.

The best thing I can tell you is that the very last evening of her life was very peaceful. The wonderful nurses opened the windows, and a breeze and moonlight spilled into her room. Softly, she sailed on, away from us to another shore.

Hugs and prayers, Hart.

Adina West said...

Thinking of you at this time Hart. And yes, I have experience with a loss like this, and it's stayed with me.

My husband's grandmother died of cancer, and grew progressively weaker over some months, and he and I were at her bedside when she passed away.

You're right that there's nothing particularly romantic about helping a frail person go to the toilet because they're too weak to go alone; but also that there's something very valuable about offering such a service to a loved one when needed.

Very glad you got those two good days with your aunt at the end, and knowing what I know of cancer, I'm glad the end was not too protracted in her case.

I hope your new closeness with your cousin helps him/her through this difficult time too.


Helena said...

I am so sorry for your loss, Hart, but I'm also relieved you were able to spend time with your aunt while she was still alive. How important your presence was, and helping her with the basics functions while her body failed her -- that is love.

I've known a lot of nurses, and years ago one nurse told me simply, "I have killed people," and she had no regrets. She described a typical scenario in a hospital. A patient dying of cancer would be in terrible pain and begging to be put out of his misery. The doctor would pretend not to hear him and merely tell the nurse the amount of pain killer to give the patient. Both the nurse and doctor knew that this high amount was what it would take to end the pain, but that the weak patient couldn't survive the dosage. The nurse would say nothing and administer the pain killer. And the patient would die, at peace and grateful.

The nurse assured me that these scenes take place all the time in hospitals everywhere in this country. How tragic that caregivers have to employ such subterfuge in order to be humane. Like you say, we treat our animals better.

Welcome home, Hart. You done good.

~Sia McKye~ said...

Yes, Hart, I've been here a couple of times with my dad and my brother. I agree, we are much more humane with our dying animals than we are with dying people and that's wrong.

the only growing experience, if you will, is appreciating the life I have and how precious it is.

Sia McKye's Thoughts...OVER COFFEE