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After five months of fighting metastatic pancreatic cancer, my mother has gone on hospice. For those of you lucky enough to be unaware, hospice is an organization dedicated to end-of-life care. Basically it provides everything a patient and their caregiver(s) need in order to stay comfortable towards the end of an illness or terminal condition, including medication, hospital beds, oxygen, even commodes. (Chocolate peanut butter frozen yogurt and the first three seasons of The Tudors are not included.) All I had ever heard about the organization up until this point had been good things. My aunt and grandmother had been on hospice, and my childlike understanding of the group was that they were a gang of nuns that acted as kindly drug pushers. Close, but not quite. First of all, we’ve only met one nun, and she was awesome, though she could have used a habit. Secondly, the drugs are necessary.

My mom is now on morphine. After experiencing her first high, she said she felt funny. I assured her it was normal, and that most of the musicians I listened to in the ’90s felt the way she did for the duration of the decade. Other than the nodding, there have been hallucinations, ranging from the amusing — “When did you get that big, black tattoo on your back?” — to the bizarre — “Does that say fennel?” As I deal with the bedsores, the dosing, the discomfort, the bathroom issues, I have to wonder about these hospice people. Why on earth would someone do this for a living?

It feels like a million years ago that I contemplated being a home health aid in Portland. I was desperate for work, destitute, and had a friend that cared for the severely mentally and physically impaired. He could get me a job in an instant. I thought about it. I was really, really hungry, and I didn’t know where rent was coming from, but there were a lot of things that made me hesitant to sign on the dotted line. For one, it was a lot of bathing, clothing, and feeding of adults who, according to my friend, didn’t really comprehend much about their state of existence or what was going on from moment to moment. My friend also told me that it was often very lonely work, but that the money was good and more than made up for it.

I chose not to do it. I would have felt odd caring for a stranger like that, it was way too intimate to be with someone in exchange for a paycheck without Robert Redford involved. Although I’m sure it was irrational, I also felt like it was a bit of a violation of their dignity. I had enough issues with leaving the door open to pee in front of Simon. I couldn’t imagine having someone I didn’t know wipe my butt and spoon feed me vegan burritos.

I imagine that hospice is similar to being a home health aid, only your patients have the shelf life of a carton of milk. My mom often wondered how her oncologist handled the fact that most of his patients died. Hospice is like that, only without the miraculous tales of recovery. On their website, if you go to apply for a job, it reads, “Contrary to the myth that hospice work is sad and depressing, our nurses say it is the most rewarding work they have ever done.”  I can’t believe that. Hospice nurses and volunteers take care of people on their way to taking a dirt nap. It’s that simple. Granted, I’m feeling a bit cynical, as my position as the caregiver leaves me pretty exhausted, frustrated, and morose. My mother is dying, there’s nothing I can do. For the  hospice worker, my mother is dying, there’s nothing they can do. Morphine, anyone?

Taking care of my mom has been the most effective form of birth control I could imagine. Bathing, feeding, clothing, and assisting her in everything from taking a pee to walking to another room has informed me that, no, I am not patient enough to shoot a little Mini Ainsley out of my love canal. But she’s my mom. I love her, I ache for her, and I wish this weren’t happening. Again, if you do have a kid, I can understand, it’s yours. You want it to be happy, healthy, to prosper. You can smile as you get up in the middle of the night to give them a glass of juice, and you can patiently troubleshoot the accidents that they’ve left in their Spiderman skivvies. They’re kids. Watching an adult be infantalized (let alone my own mother) is painful and humiliating. It’s hard for me to not feel completely inept, angry, and terrified, and I’m her only child. But doing this for money…or as a volunteer? I can’t comprehend the motivation, let alone why anyone would want a job like this if they have children in their own home.

I believe in the goodness of humanity, this blog alone has taught me that much. Every time my wallet has gotten dangerously thin, someone has randomly sent a donation. Each time I feel like the worst writer to ever tap Morse into a keyboard, someone leaves a comment or writes me a funny, complimentary email. Despite my philosophy that had developed over years of listening to goth music, people have proven that they are, in fact, not all bad. But it’s unfathomable to me that people dedicate their time to helping people like my mother, complete strangers, in their last weeks or months of life. I don’t know if I’m humbled or ashamed of the fact that I can say unequivocally that caring for the dying is something I cannot do, outside of the situation I’m in.

If you are the opposite of yours truly, and are the kind of person who would thrive doing this sort of thing, first of all, more power to you. You are a better person than I. Next, you can apply for a position on your local hospice website, or by calling them and asking if there are any opportunities available. To work with hospice in the Long Island area, you need two years experience in homecare or hospice, a valid driver’s license with a car to match, knowledge of medication, an understanding of how to control various symptoms, and language skills. If you speak Spanish, Chinese, or Korean, even better. If you’re able to calmly explain basic procedures to a completely clueless chick with tattoos and a foul mouth, you should get hired now.

If you’re on the other end of the hospice can-and-string like me, I have to let you know that, so far, they are incredible. In the dead of night, if you notice that your loved one is itchy, you can call them and they are there. If you just want someone to talk to because you’re scared and alone, they’re there. If you need a refill on Roxanol, they will have it delivered to your door. They can’t make the pain of the loss stop, but they help to try to make me comfortable, just as they do for my mom.

I want to take the opportunity to thank everyone for your support. Even though I can’t guarantee that I’ll be able to update this blog as regularly over the next few weeks, I promise that I’ll keep posting. Feel free to drop me a line, AinsleyDrew at gmail dot com. And thank you to everyone who donates.

Ministry of Imagery is still open for business.

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3 Comments

  1. I wish I had something profound to offer you 😦

  2. Beautiful.

    My mom worked for several years as a in-home caregiver, not exactly hospice, but close enough. I still have no idea how she was able to do what she did, but I’m sure she will be rewarded for her service by god/karma/FSM/whatever you may believe.

    Over the course of about 7 yeras, she provided one-to-one service for 4 elderly and chronically ill patients, and she lost them all. I’ve questioned for years why anyone would subject themselves to the pain of developing a relationship with someone that you know is dying. The only thing I can come up with is that, for nearly a decade she would drive everyday to a nursing home to visit and take care of her mother. Then her mother died. I think ever since then, she’s been searching for someone to take care of, someone to replace the role that her mother played.

    But anyway. Nice post and good luck with everything.

  3. I found my way here via Ron Bailey, and wanted to say that this resonates so clearly with me. After having to spend a great deal of time in the hospital last year with my partner, who had to have surgery, I realized that nothing can ever beat the comfort of home.

    I’m reminded, also, of Anthony Rapp’s memoir, and of a group called Friends in Deed who he was able to turn to when his mother was dying. It’s not much, coming from a complete stranger, but I was touched by your words and wanted you to know. Take care, and all the best!


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