Not Treatable, Not Curable

It’s a blow, isn’t it. To hear those words after watching him fight. To know he won’t be around much longer.

You’ve never done this before, taken care of someone who is dying. Lots of feelings flying around. And fears. And love. All rolled together.

This time, these moments with him are what you’ve got. It’s O.K. to be scared. O.K to be mad or sad or whatever you are. There’s no need to fight the feelings. You can feel them all and still be present. This journey can be, if you allow it, one of the most meaningful experiences of your life. Here are a few things I know for sure:

(1) He will choose the time. It’s a soul thing, not a dad thing. When his soul is ready, he will go. No doctor, nurse, or anyone else in the world will be able to tell you with certainty when that is.

(2) There will be a time when he can’t get out of bed. Ask him – Dad, where would you like the bed to be when you can’t get up anymore? Home? In the family room? In your bedroom? Inpatient hospice? So often people will tuck their person away in the back of the house. Ask him and don’t be surprised if he doesn’t answer right away. When the time is right, he will.

(3) If you can, tell him he can go whenever he’s ready. There is a permission giving that can be really important. You won’t be hastening anything with permission but releasing him/ego from guilt/sadness of leaving the ones he loves.

(4) Don’t be scared of pain medicine and please encourage him not be. He won’t get addicted. I cannot emphasize that enough. The pain can be rather intense and there are ample medications in this day and time. If he’s hurting, they can do something about it. If he’s not on hospice, please consider it. I can sum up hospice with one word: Godsend.

(6) There will be spirits/people to meet him and help him cross. He may begin to talk with them/watch them before he goes. You will see his eyes focus on the ceiling or near windows. You may catch him laughing or smiling. He may talk about needing his shoes or a map – metaphors for releasing himself from his body. Just go with it. If he talks about needing his shoes, tell him they’re right there by the bed. If he talks about the map or a trip, go with it. Where are you going dad? What do you need?

(7) Hallucinations are scary – bugs on the wall, faces contorting, a  truck driving through the house. Not everyone has them but many do. They can be frightening AND medicine can be given to quell them. Just ask. You’ll know.

(8) Visions are not scary. I believe everyone has visions, though not all speak of them. If your dad is having visions, he won’t be frighted by the experience. He may talk about people in the room only he can see, music only he can hear, angels, relatives that have been gone a long time. He may ask for a window to be opened or closed to let people in and out. You may see him reaching up toward something. He may complain about the noise of all the people standing around talking. In the early 1990s, a young boy was dying from AIDS in an inpatient hospice. One morning he complained to his nurse about the loud boys playing in the corner of the room. The nurse asked who was there. “John, Gabe, and Marcus.” Turns out  John, Gabe, and Marcus had all died in the same hospice a few months prior to this boy’s arrival.  There’s no way he could’ve known them. But he did. Please don’t discount the visions.

(9) There is often a period of distinct restlessness where your dad may be super agitated, can’t wear clothes, doesn’t want covers on him. This can last a a few days and  may be uncomfortable to watch. It’s as though the person is working to free themselves from their body. Again, medication is good but the other thing to remember is this; you can’t know what he’s experiencing. That restlessness is the human side while at the same time, a whole spiritual thing is happening – i.e., part of him is out of his body trying to make sense of what’s happening and NOT hurting. If you talk to folks who’ve had near death experiences, they’ll tell you the same.

(10) There is usually distinct calm after the restlessness. This is where you may see the smiling, watching the ceiling, and deep peace. This is also when there will be mostly sleeping – like he’s trying out the other side to see if it’ll be OK. He will go and come back into his body over and over. You’ll start to see it.

(11) There may be a moment, few hours, maybe even a whole day where he seemingly has a miraculous awakening – clear thinking, chatty, or wants to eat after not eating for a long time. You’ve heard of people who open their eyes and say I love you and then go? That’s this phenomenon. It’s like they come back just for moment in time to connect before they leave this plane.

(12) Ask if he wants to talk about his funeral or any special requests. You may be surprised at the conversation!!! My mother made a declaration one morning that she was never, ever going to wear a bra again. We turned that into a reason for a party, complete with a harpist and root beer floats for 15 people. Equal parts funny, poignant, sad, and not to be missed.

(13) It’s not all doom,  gloom, and sadness. Dark/death humor can make all of you laugh so hard you pee your pants. Mom instigated the writing of a message to her favorite bath giver. In marker. Across both butt cheeks. Still makes me laugh.

(14) You can do this. You can. There is no perfect way. There is only the way you and your dad and the rest of your family can manage. That will be perfect enough.

(15) Drink water…silly I know in the context of the rest of this but you, ‘o wonderful caregiver, can get dehydrated in this process of caring so deeply.

(16) Here’s a great book: Final Gifts by Callanan and Kelly (1992). These two authors are ninja goddess end-of-life nurses. Their stories are illuminating, insightful, and will give you more guidance.

(17) Do your best to let go of outcomes – how you think people should act, what you think they should do, or how they should be. Each person in your circle will have their own experience. You’re in charge of yours. Your dad is in charge of his.

This is a lot of information. I’m sharing so much now because I want you to be able to fully engage if you want to.

This isn’t a passive experience you and your Dad are having. It’s active. You can talk to him about this stuff. You can ask him to tell you if he see’s anyone. You can listen for metaphors. When the time comes, you can connect wordlessly by massaging his arms/hand/legs/feet with lotion if he can tolerate it. Tell him you’re scared. Tell him you’re going to miss him. Tell him you love him. If you can’t tell him and you want to, write him a letter and ask someone to read it to him. Even if he’s not coherent, some part of him can hear.

This journey, being with someone who is dying, someone you love very much, is one of the toughest things you’ll do. I promise you though, it can also be one of the most rewarding, awe inspiring, and meaningful gifts of your life.

Thinking of you today and sending love, light, and peace -