That pretty much describes Will’s attitude these days. He’s in no hurry to experience the next dimension, of course, but he’s weary of never knowing which day(s) will be OK and which will suck. We’ve missed church for several weeks because he’s been ill so much of the time, and he is angry with his body for betraying him. He’s relied on it for his entire life of working with his hands and his strength, and now it’s turned on him with a vengeance, leaving him weakened, though not diminished.
We had our hospice consult Friday, and he’s made up his mind—no more drugs, no more trying (and failing) to get an investigational radiation treatment approved by insurance. We also have a timeline…six to nine months if God allows, maybe less if the cancer continues to overtake his liver at the rate it’s going now.
There’s so much to think about, so much to plan for, none of it good. I remember when thinking and planning were fun—our future was still ahead of us, and exciting things like getting married and having children were at the top of the list. Now it’s all about comfort care and end-of-life issues, like keeping pain and nausea under control and maintaining his dignity and how the hell are we going to pay for a funeral?!
I’ve been looking through the book the hospice case manager brought us yesterday, and I feel like I’m drowning in information. It’s not like I haven’t seen this material before—we got one just like it when he went on hospice for that VERY brief time back in the summer of 2013—but it’s all so overwhelming now that there is nothing between us and the yawning abyss but a few months.
You’d think I’d never worked extensively with hospice patients and their families like I did during my career. As a nurse, I know too much; as a wife, I don’t even know enough to ask the right questions. There is such a glaring difference between being a nurse and being a caregiver, and I’m not liking the latter role one bit.
But as much as all this distresses me, it doesn’t hold a candle to what Will is experiencing. He’s scared, and understandably so; last night we had the first of what will probably be a series of discussions regarding his wishes. Naturally we both cried, because he doesn’t want to let go of life even as he wants not to suffer, and I’m heartsick at the idea of losing him. Life is very precious to him and I don’t think I’ve ever known anyone who was as grateful for his blessings as Will is. He has not had an easy life by any stretch of the imagination, but he overcame his challenges by sheer force of determination, and of course, by his love of family.
This is the love I’ll remember when there are no more memories to be made. This is the jewel of a husband I finally learned to fully appreciate after the cancer diagnosis (thank You, Lord for these precious years of survival!). And this is the man whose work-roughened hands are the gentlest I’ve ever known.
I know he’s sick and tired of being sick and tired. But hopefully, getting his symptoms under control and keeping him comfortable will enable him to enjoy some quality of life in the time he has left. Mostly, he deserves peace…and he needs to know that we’ll all be OK when all is said and done. I don’t know how I’m going to make that work. But I owe it to him to try.