Posted on May 19, 2016
Written by Karen (not Nick)
What even is hospice care?
After I announced I was moving to hospice care I received many texts. Some read:
“Are they treating you nice there?"
"How's the view?"
"How's the food?"
Yes, hospice can be a place. Supposedly here in Charlotte it's like checking into a 5 star lodge. If I get minimally sicker I might go there to repair.
But most people choose to stay home. The day I left the oncologist office a case worker came to see me. Yes, same day! The next day a social worker came (she will also be coming to play/talk with Brycen) and by Friday a nurse was there. I also have a nurse's aide twice a week, and a cleaning lady once a week. I eventually will see a doctor, but my vitals are close to normal so they don't seem too rushed about that.
By the next day I had a hospital bed with a bedside table here at home. Also, a brand new wheel chair - one I could recline in. By now I also have oxygen tanks and a special air mattress I could use if interested.
Their goal is to make dying as comfortable as possible.
I have been out into the world maybe 5 times since moving to hospice care. So finding comfort here at home has been key. Another question I constantly receive: Are the people who come out to my house good to me? Yes. I think they have to be screened for niceness. They also will give me, or find a way to get me, pretty much anything I want or need. You have to be a good strong person to work in hospice care.
So what do I do all day?
At first, I lived in a big old fog of meds and the shock of not fighting cancer anymore. But my days are starting to become routine. I wake up early to take my meds. Sometimes as early as 4m. Then I usually go back to sleep. Sometimes there is a small window for me to write or draw without falling asleep. When I do get too sleepy, its back to bed for me. Sometimes I sleep all morning. Somewhere around noon I have the hospice visitor of the day, and then I try to eat a tiny lunch. In the past 3 weeks my lunch sizes have gone from a pizza slice with fruit and a dessert to just 3 sips of ginger ale. It depends on how my back and stomach are feeling. Later my mom picks up Brycen from daycare or his other grandma drops him off. Brycen is disappointed I can’t get out of bed, but we usually make the most of it – suddenly my bed is the next best outlook patrol tower for his Paw Patrol dogs. Or we play a few rounds of Gold Fish. Brycen leaves after dinner and I have another brief window to write or scroll the internet or play online games. I am becoming less tired in the evening, but only if I slept well during the day and my meds haven’t sent me into a fog. My mom and have been watching seasons of Will and Grace on DVDs. I am usually asleep between 9 and 10. And that is my day, basically. Weekends are the same except I have more visitors.
I know a lot of people think since I am in hospice care, it means I could die any day now. I am sure that is true, but I have been trying to look at it based on how I feel. And today, at the moment anyway, I don’t feeling like dying.
What am I dealing with?
Jaundice. The bilirubin in my blood is going up as my liver function goes down. As it goes up, I look more and more like Big Bird.
Swollen organs in my abdomen. Not only is my liver engorged, so are my spleen, kidneys, gall bladder, whatever else is down there. It puts pressure on my bladder, stomach, on my stoma and on my back. I feel like I am 8 and a half months pregnant.
Severe back pain. What is going on with my right side of my back? Referred pain? Has cancer spread to my bones? Dealing with back pain and cramps is probably my biggest complaint.
I have started to have a few issues breathing too. This is not a daily issue but I now have oxygen tanks to help me make the air more comfortable to breath in.
So where do I go from here? I'm not sobbing every time I bleed anymore. (Yes, I am still bleeding, but like I said before, the gauze that has been sent to me has been wonderful.
What an experience that was. It was like I was a boat filled with holes. Every time we plugged a hole and had it perfect, another plug would pop. It got to the point where I was naming each rupture after the things I am missing because of them:
- a walk on the beach with my son. The kind where we dance in the waves and chase each other on sand.
- building that extra wow sand castle
- hiking and camping in the mountains with my son
- driving . Oh how I do love to drive
- being at the beach but not being able to take good pictures of the experience.
- t-ball games
- start of pre-kindergarten
- smell of fresh cut grass, fall leaves, that snow smell
- my independence
- And finding that moment where I am completely at piece outdoors
(Warning, I am about to start writing a little about me here, not about hospice. If you get bored with my tangent, I totally understand. But when you’re in hospice and you still have the ability to use your brain, you have a lot of time to think).
People ask me where my favorite place is, and I've been thinking hard. Somewhere in Alaska? Max Patch Mountain? A beach on Emerald Isle? Asheville? The cottage on the St Lawrence River my family spent going to every year? No, but please go to these places and think of me. I have done a lot of thinking about these places because I will have my ashes scattered outdoors.
I finally realized for me it's not a place, it's a moment. And it can happen anywhere. It happened in Charlotte less than 2 weeks ago. It's the moment when all the heat and humidity drop out of the air, and the air feels as fresh as fall apples. Temperatures that were hitting 80 might drop to the 40s like it did here, or even the thirties. One time in Montana the temps dropped from 101 degrees to 63 during one of the most electrical storms I had ever been through.
I say: "I want to camping!! This weather makes me want to be outside!" Ugh, my friend says, it's cold. And it is, but it's a fresh cold, and it's better than any high or drunk feeling ever. I want to gather my friends and dance in the woods and swim in the St. Lawrence River again until I'm purple from cold and wrinkled from exposure. It is my purest moment. This is what life should have been about. Yes, I believe in hard work, but not at the expense of stressing out the body so badly it catches diseases.
A moment I could not wait to pass on to my son. I was hoping, (before the last week of March), to take him camping this summer. I was heart broken to have very few moments with him on the beach. I just hope he figures it out on his own. Get outside. Get into nature and get into it deep.
What does this all have to do with hospice and my death? Maybe I'm writing part of my eulogy?
Thanks for constantly checking in on me. I wish I could tell you how long I will be in hospice – people have straight up asked me. Obviously I am not on the 2 week plan.
Please share this update and give if you can (medical bills for ER visits and ambulance rides just kinda suck. Also, this new way of billing? Confusing.
I hope to have a major announcement this week! So excited.