"What to Expect When You are Expecting Terminal Cancer"

OK, there is a death manual. Sort of.

When my mom was in the hospital in November after we had "Avery" removed, she went on hospice right away (a good move, might I add). A hospice counselor came to the hospital room and handed me a white folder.

I thought it was a bit soon to be planning for her death. I mean, I knew she was terminal, not that terminal. Anyway, the hospice folder was weird. It was kind of a "Dying for Idiots" guide. The white folder that contained a variety of material, from a list of support groups to how not to blow yourself up with oxygen in the house to, well, some other stuff I knew would be kinda hard to read. I noticed the ominous juxtaposition of some of those titles, such as the "Hospice… it's all about living," pamphlet, which, ironically ,was placed neatly in front of the "Newspaper Obituary Worksheet".

Hmmm, which should I read first? I started with the crappy, sad "already dead" stuff, and worked my way back to the "living". I chose to kick-off my hospice experience with the "Newspaper Obituary Worksheet". It asked for things like her schooling, employment, hobbies, community activities, and so on. I looked at it thinking, 'Who would need a friggin' worksheet to write an obituary with?, I know all this!'

Then I realized, when 'it' happens, I might be so shaken that I may not be able to remember that she went to nursing school in McNary, Arizona, or that she volunteered for years with the hospital auxiliary in Yuma (Actually, even now I had to pause to recall that last one.). It has a place to list surviving loved ones. Can't leave anyone out. Mom was not a veteran, so I will leave that one blank. But where is asks for "Wars/Conflicts" I think I will put "cancer'. Yes, I can see this being useful.

Then there is the "Hospice… it's all about living" pamphlet. It explains the services provided by hospice. I didn't really know what they were, and honestly I didn't read it, but the counselor explained it to me, so I will explain it to you. Hospice provides comfort to the terminally ill. Free. They provide free pain medication, sedatives and whatever else one needs to cross over with as little pain as possible. They gave (lent) us an oxygen so mom can breath easier. They lent us a hospital bed so she can get up easier, a shower stool so she can bath easier, and even a portable toilet so she doesn't have to go far when she has to go. She has used them all, and yes, they have made life into death a lot easier, and cleaner. A nurse comes and visits her a few times a week. A social worker comes by to check on her condition (and mine) at least once a month.

I just now opened up the pamphlet that I just said I hadn't read, and yes it's all in there, plus a little more.
There is a pamphlet about what to do when the patient is too sick to make medical decisions for themselves, encouraging the patient to quickly get a 'durable power of attorney for medical care.' We had already done this before she went into the hospital. I can't tell you how important this is. Remember Terry Schiavo? I don't think anyone really wants to waste away as a mindless vegetable for decades while family members fight over keeping you alive with machines. Enough said. Hospice can help you avoid this.

OK, back to the handbook for death and dying. I saved one booklet for last, because it is so difficult to read.
When I pulled it out of the white folder while I was sitting next to my mom's hospital bed, I read the title out loud. I burst into tears. So did the counselor. It's a small light blue booklet with a very simple sketch of an old ship sailing off into the sea, nearly on the horizon.

"GONE FROM MY SIGHT," it read. The reality set in. Say your goodbyes, this is a one-way voyage, and it is Brenda's final voyage.
My mom is on the horizon sailing out of my sight. Forever.

I refused to read it. I thought the cover was really harsh. Throw it in my face, why don't ya!? I didn't even want to know what was inside. The counselor told me I should read it and the booklet was very helpful. Yeah, helpful to make me totally depressed. Thanks.

When we came home I left my Dying for Idiots folder on the table. I knew that little, mean blue book was inside, just waiting to throw my fragile emotions into a deep, dark pit of loathing and despair. But, curiosity got the best of me. I'm glad it did.

It is written by a woman named Barbara Karnes. In her words, it is a guideline for dying. I have since learned Karnes was a hospice nurse for nearly three decades, and during that time noticed patterns with people who were in the last few months, weeks, days and hours of dying. It is a morbid final 'to do' list, so when your loved one checks off another item, you know about what stage they are at in the process of death.

Karnes says in the little blue book that not everyone is the same, and some who are terminally ill will experience all of the symptoms, others none. Here are some of them:
One to three months prior to death:
Withdrawal - from visitors and even loved ones.
Food - Not as much.
Sleep - More than before.

One to two weeks prior to death:
Disorientation - lots of sleep, confusion.
Physical Changes - lower blood pressure, fluctuating body temperature, changes in skin color, increased\decreased respiration.

One to two days to hours prior to death:
Intensity in aforementioned signs.
Surge of energy - talking, even eating again - or no activity at all. Congestion.
Blotchy skin.
Glassy eyes.

Minutes prior to death:
Fish out of water breathing
Cannot be awakened

It has been nearly three months since I have ready the scary, evil, little blue book that made me cry by my mom's bedside.
She is hovering within the months to weeks. I look for the signs. I see some, not others. Without this book I may not know what I am looking for. She has had a few fevers and severe pains where I though she could die (I will get into this later), but she recovered quickly. Still, she is checking off her list.
This week she has been sleeping a lot more. Sleeping like cat, about 20 hours a day. Check.
She doesn't want to go to Target or the supermarket and roll around in the motorized cart. She doesn't want to go anywhere. Check. She doesn't want any visitors. She has fluctuating temperatures. Check. Check.
But, she is eating just fine, reading her novels and frequently going outside to smoke (like it matters now).
She just went back to bed right now. Again. But according to my Dying for Idiots guide, at least for today, I think (I hope) my mom will be here tomorrow.