"Yo mom, how YOU doin'?"

I am lucky as a caretaker in the sense that my mom can be her own caretaker much of the time. While I like to be with her most of the time, some of the time, I need time for myself. So does she.

This wasn't easy to come to terms with. For the first few weeks when she was home from surgery we paid a 'sitter' to stay with her while I was at work. She may have needed it... for a few days. Mom told me it was not necessary. I thought it was. I also thought it was necessary for me to check on her every move.

Every time she flexed a muscle I would ask, "Where are you going?" "Need anything?" "What can I get you?" Mind you, she moves around a lot.

I had my eagle eye on her. There would be no slips, no falls. Not on my watch. I was the sergeant of safety, the CIA of mom's every move, the Barney Fife of home healthcare. Poor mom.

I didn't count, but I can guess I asked her, "How ya' doing?" "What ya' doing?" "Where ya' going?" dozens of times a day. How annoying for her.

She would always answer me, "To pee." "Get something to eat." "Blow my nose." "Change my (colostomy) bag."

I realized that all of this vulturesque behavior was probably not necessary after she sat me down and told me that very directly. About 13 times. I also got a clue that the home healthcare aide didn't need to be there on a regular basis because mom was making the aide breakfast. It may have helped that the Hospice social worker and other former caretakers told me I could leave her at times, health permitting. Mom is OK, much of the time.

Things have changed. We got her LifeAlert, which is like a 9-1-1 button around her neck. But of course, with my twisted mind, when she falls and can't get up I worry the button will be wedged someplace like under her back, just out of reach. I know, that probably won't happen. The more likely scenario is the cat will set it off laying on her stomach.

I have been home (to my house) just three times. I live about an hour away in the mountains. However, I did spend the weekend in Kernville for Whiskey Flat Days. Our close friends Robert and Randy physically checked on her, as I did verbally with frequent phone calls. I needed that time away. She needed the time away from me. But I did still feel guilty.

Mom started eating solid food again yesterday, and was getting along just splendid. So, I planned to head for the hills today. My hills, my home. I was excited about seeing my house, my dogs, my real bed. Then I got home (mom's home) after work. Mom is having a small episode. She was vomiting and is nauseated. She was laying in bed when she told me this. There was a cat sitting directly on her stomach.

"Maybe the cat is making your tummy hurt," I said.

No, she said, that wasn't it.

There will be no frolicking in the hills for me, at least for today. I'm OK with that. My house isn't going anywhere. But my mom is. So tonight, I will be here.

Where's the Beet?

I don't have kids, so I've missed out on the vast array of wondrous culinary surprises that have been smashed, blended and pureed into tiny jars in the baby food aisle. That has all changed.

Mom stopped eating solid food, solidly, two day ago. The deal we agreed upon is when she stops eating, she stops eating. I have been a bit concerned. She's not in pain, and still shuffling around the house, but a bit tired, as usual. Still, the food thing is pretty important in sustaining life.

Today we found a solution to her recently acquired anorexia. This morning before I came home from work to check on her about 7:30 a.m., she asked me to get her some baby food: peaches and cereal. When I got home, the hospice nurse had arrived. I laid out a spread of about seven varieties of various pureed baby cereal and fruit. I didn't really think she would eat it. I was wrong. As the hospice nurse sat across the table from her asking her questions about how she was doing, mom ate. Quickly. The small jar was gone in about three minutes. Cool.

She then told the nurse that when I was a child my choice for baby food was red beets. She said I would eat the whole jar, and to paraphrase, it would come out red the other end as well. Something in that story must have stuck with mom for many hours.

When I got home she wanted to go to the store. She wanted more baby food, a particular baby food: red beets.

Was this a twisted experiment? She does have a clear colostomy bag.

No, I really think she just wanted beets.

Mind you, this is the first time she has been out of the house in a few weeks so it's kind of a big deal. We got to Albertson's and she cruised over to the baby food aisle in the motorized cart.
The choices of beige blends in tiny jars seemed endless. I'm sure each has a unique taste inside, but outside, they are only distinguishable by the label. Mom stared at the dozens of brands stacked four rows high, straining to read the contents.

So I helped out, "There's apple-banana oatmeal. Peas and carrots. Sweet potatoes..."



"I'm looking for beets," she said. "They gotta have beets."

"I don't see any beets, mom," I replied, as I visually scanned the jars.

I could sense her stomach sink a tad. But, we grabbed about seven jars of fruits and veggies, then she saw the pink-hued blended meats, and that seemed to suffice. I was glad she passed over the blended veal.

When we got home, she was very tired. I asked if she wanted to go lay down, and she said she just wanted to look at her jars of baby food for a minute. Choices. For her, they were true gastronomical treasures. Food, once again.

She ate a whole jar of pureed peaches. The baby food she ate today was the most she had eaten in two days. I will continue my quest in secret for those darn red beets.

"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.

A blog about caring for a terminally ill loved one

This sucks.

My 68-year-old mom, Brenda, is dying from secondary liver cancer which began as colon cancer. I am her primary caretaker.

It is painful for her, and painful for me. The cancer is far past any hope of treatment. Being a former registered nurse, my mom has dealt with death and dying her whole life, and in her final moments she has chosen quality of life over quantity of life. I get it. Why undergo chemo treatment that would make you sick more of the time, when you may just be sick some of the time from the cancer?

Anyway, the reason I have decided to write this blog (with mom's permission) is to show others who are going through similar situations that they are not alone. And second (which really should be first) is I need help with this. I need to know I am not alone. I have never done this before and I usually have to do things a few times before I get really good at them. Hopefully, I will never have to 'get good' at this.

I am the imperfect caretaker. I am flawed, in the dark, scared and confused. OK, I know I am not alone. So, I am seeking out the other imperfect caretakers (and perfect ones if they actually exist) to join in this conversation. I would also like to hear from the patients themselves. You don't need to have cancer - any debilitating illness or injury will do. When it comes down to it - it is much the same. Tell me your thoughts struggles, fears, triumphs and all things patient and caretaker.

Well, I guess I should go first.

In the summer of 2008 my mom was feeling sick. She had constant diarrhea (I mean constant) and a low grade fever. She thought she had a flu she just couldn't kick. Her primary doctor referred her to a gastroenterologist (stomach\intestine) specialist. The specialist wanted to do a colonoscopy. You know, where they put a tube with camera up your bum.

I remember going to the appointment with her. When they wheeled her out we were laughing that a camera was up her bum. She was loaded from the meds and cracking up. I was cracking up that she was loaded on meds. Then the doctor walked in. The look on her face said it all. This was not good.

Brenda had two masses in her lower colon, one so large the doctor couldn't even get the camera past it. This was the cause of her diarrhea.
But we both took it in stride, made jokes, hoped for a quick fix.

Here is an email I wrote in late October:

"All of you are good friends, old friends or family, and most of you know my mom, commonly referred to as 'the Brenda'. The Brenda has been diagnosed with colon cancer. It is a tough time, and I will be her primary caretaker due to geography. While it is a serious issue, you all know me, and this has become my outlet to add a little healthy laughter to an unhealthy situation. If you have any questions feel free to ask. We do not know the stage yet, or if it has metastasized, but is has been growing for quite some time. She feels a bit tired, and has problems with unmentionable bodily functions (which I just mentioned), but is otherwise just as cocky and cantankerous as normal. We are waiting to get approval for surgery from her insurance "INsecure Horizons". Then we will know more. I will let you all know.

So, in the meantime, we have still not determined the sex of the tumor. I want to know, but she wants it to be a surprise... and since she is physically carrying it - I guess it is her choice. We have mulled over a few names... unisex of course. I like 'Avery'. She is leaning towards 'Terry'. You can clearly see why mine is the better choice. The bright side is I have a power of attorney when she cannot make decision for herself (like general anesthesia) , hence, 'Avery' it is. We have, however, agreed on a theme for our growing bundle of wonders - cats. While we have decided to forgo the traditional tumor shower, for those of you that cannot resist, we have registered at Target, Tumors-R-Us and the Colostomy Baggery (We absolutely adore the new pawprint line!)."

The humor quickly faded. It took several more weeks before we could get the CT scan. It was a few more weeks before we could see the surgeon. The waiting was hell. So was his diagnosis. She had late stage colon cancer that has metastasized to her liver. He would need to operate and she would have colostomy bag (I actually looked, there is no paw-print line). She asked the doctor if her colon could be reconnected and the bag ditched when she recovered. He hesitantly said, "Technically it is possible."

I knew what he meant. Brenda will not be recovering. She had the surgery on November 14th. It went very smooth, the eight-day stay at San Joaquin Hospital was comfortable.
But what lie ahead in the months to come would be anything but.

(To be continued)