5 Things I Wish I Didn’t Know About Hospice

My dad was diagnosed with Stage IV lung cancer in the middle of September 2013 and by the middle of March 2014 he had died. 6 months from diagnosis to death, which is a lot of time or no time or way too much time or no time at all, depending on one’s proximity to the whole situation.

Before all this, I’d thought hospice was a place. I’d thought that after a family got this kind of news, they’d be led–quietly and respectfully–to a new continent of care where nurses worked around the clock and the morphine was administered via drip. I’d thought we’d take turns sitting with our father, holding him and crying while someone else managed the gruesome task of keeping a body alive while metastasis takes over the brain and the spine.

Lesson 1: Hospice is not a place. Hospice is a timetable.

Unless you have independent resources, hospice is typically something you register for through Medicare and do yourself at home. After you receive an order from an MD that your family qualifies for hospice — a qualification you meet because you will be responding to the terminal illness only with palliative care measures — at least three social workers will tell you how lucky you are to be able to care for your father at home. In response to this assertion, you will agree to be polite, and you will agree because you are happy to get him out of the hospital, but lucky? It doesn’t feel very lucky. After the radiation and the meeting with the oncologist team, a meeting where they tell your dad that he has between 3–6 months to live, you go home.

In our case, before we could take him home, we took him to my weird sublet. We stayed there while we waited to build a road to my parent’s house. It took six weeks, to get him home. Once there, we kept the wood stove burning over the entire winter. We’d cut a road to the house, but the road didn’t go all the way up to the house. But it went far enough that the hospice pharmacy delivery people could deliver their paper bags filled with liquid morphine (root beer flavored), liquid Ativan (blue raspberry flavored), and blister packs of Dilaudid.

About once a week a hospice nurse would come for a home visit. Upon arrival she would spend 10 minutes telling us how hard it had been get to the house. “How can you live out here?” she’d ask my dying father. Nothing made my dad as anxious as the hospice nurse. He worried that she would stop giving him his pain medication or that she would report us to the county building inspector. No amount of signaling to the hospice nurse could get her to stop this line of conversation. I braced for her visit like she was the Grand Inquisitor.

Sometime in midwinter, our hospice nurse fell on our new dirt road. She stopped coming for weeks, and then I started to worry too. Was she going to report us? Who do you get reported to for having a muddy road and a dying parent? Was she going to sue us? Luckily, she never came back, and we had a couple of weeks of respite from these visits. Eventually we got a new one. She also spent her first 10 minutes telling us how hard it was to get to our house, but at least she didn’t get hurt. And by that point my dad’s paranoia had slipped into fuller delusions, and he was no longer worried about being reported.

Lesson 2: You Care. No One Else Cares.

If your dad’s Medicare benefits are suddenly canceled in month 2 of the home hospice episode and you find yourself on the phone with someone in Colorado trying to tell them that your mother worked as a secretary for an HMO for 25 years precisely so that when her husband was dying of brain cancer they would have health insurance, the person on the other end of the line will be totally unmoved. If you were dying, or if a small child was dying, they would probably be similarly unmoved. If your 72-year old father is dying, and he smoked, well, 72 is a good run and smoking is really unhealthy. When you discover that the Medicare has been cancelled because your parents house is too remote to have a federally recognized street address and the person on the phone is telling you that the house doesn’t exist, even though you are standing in the house that your parents have lived in for 35 years, and even as you imagine how truly screwed homeless people must be if they get sick, no amount of choked back tears will make anyone care about the Kafka-style bureaucratic nightmare that is crashing down on your shoulders like 1000 pounds of non-existent house. You will tell your dad that everything is OK. You will bang your head into the wall even if it causes dirt to fall on your head. And really, no one else will care.

Lesson 3: There will be so much paperwork. You really have no idea how much paperwork there will be.

All of the paperwork will be depressing and hard to fill out. There are advanced health directives and orders for non-resuscitation that require you to “talk” to your father about the fact that he is dying. He will have forgotten that he is dying, and when you remind him he might start crying. He might become very paranoid about signing anything. You will put the papers aside and think about forging his signature, but because of the ataxia and other brain-cancer related symptoms, you will realize that you can’t forge his signature like you used to in high school because now his signature is so shaky and unsure that it feels like too great of a betrayal to forge it. You realize that you will never be able to go back with him to the time when he was your dad and you forged his signature so you could skip 4th period and get drunk at Sarah Matsuhara’s house.

There will be forms for disability pay that you will never be able to complete because your parent’s address is not recognized by the federal postal system. You will spend an afternoon on the phone, and maybe even calculate the lost wages that your dad is entitled to and then you will give up on the whole effort because there is only so much disappointment you can stomach, Jesus Christ.

Lesson 4: The disappointment you feel will be in yourself.

No matter what you do, it won’t be enough because you know how this ends. You will remember all the times you thought about telling your dad to quit smoking and the moments when you nearly told him that he was acting strange and you were worried and would he please see a doctor. You will feel so inept as you try to get the liquid morphine into his mouth without spilling it, and you will feel so helpless when falls on his face and you can’t pick him up because even though he only weighs 110 pounds. That’s still too much for you to pick up.

Lesson 5: Hospice is the sweetest and saddest. Full stop.

And, of course, there is a sweetness and intimacy to carrying someone you love as they die, and that sweetness is like falling in love and having your heart broken at the same time. The sweetness comes in flashes, in between outbursts and the time the commode spilled. It’s when your dad asks you to sit with him on the bed and you both fall asleep, which is something you haven’t done with your dad since you were 6 years old. Or when he tells you that he was so proud of you when you did something you’d forgotten entirely about. Or when he laughs and says that it’s peaceful in the house, and he’s glad you’ll be there to take care of your mom after he dies. Or when you watch the Bourne Identity together and talk for an hour about much you both love Matt Damon. And it breaks your heart, inevitably, because each of these moments are moments that you weren’t able to have for the past three decades, either because your dad was a jerk or you were a jerk or because it didn’t seem important to have these moments, not in the scheme of the things that really mattered, like going to therapy and setting boundaries. It’s like a riddle that you solve in the very last few days of hospice, because you’ve always wondered what really matters, and now you see it in front of you.