Tuesday, November 29, 2011

When Delusions Collide

Saturday, my mom started hospice, the in-home kind. So yeah, we're getting there. The chemotherapy is not helping and is, in fact, sapping all joy and comfort out of her remaining days, so she stopped. The doctor said that of course we don't know precisely how much longer she's got, but given her symptoms (weight loss, appetite loss, difficulty breathing, blood clots, recurrent infections, routine dehydration, weakness) and the x-ray confirmation that tumors are getting more profuse and bigger, not smaller, we are looking at a couple months.

The first hospice meeting was an enrollment meeting with some kind of administrator/nurse, Linda, a nice lady. She explained the program to us. Explained the stringent requirements. (Did you know you can get kicked out of hospice if you plateau too long? [I wish!] Must be journeying toward death to qualify.) She answered our diverse questions, and exhibited incredible patience.

My mom asked a few reasonable questions and did a whole lot of listening. My aunt sat in one corner, saying things like "She's getting better, not worse; she doesn't need this." My sister sat in another corner, shaking and weeping softly. My mom's friend gave a spirited account of her volunteer service in Hurricane Katrina. My 18-year-old, Elaine, who's the one actually living with her, said nothing. We all recoiled in horror when we realized they wouldn't give her IV fluids at home (which she does twice a week), that at some point she'd be too weak to go and they still wouldn't do it.

Honestly, it's all a bit of a surreal blur. Elaine says I behaved well. (Good to know as there was a great deal of "OH, FOR HEAVEN'S SAKE, PULL IT TOGETHER, YOU WEIRDOS!" going on in my head.) Honestly, I can't remember much except my family's bizarre behavior and going through all mom's meds with Linda, the RN.

Some real perks to hospice: We no longer pay for OTC or co-pays on prescriptions. One call gets us medical advice day or night. One nurse contacts all of the doctors for my mom. Some of this uncontrolled pain will be eased. Someone else is going to change her sheets twice a week. (My shoulder sort of hates me.) A social worker will help our family work through some of the issues surrounding mom's illness and death.

And boy, are there some issues. One of the drawbacks of moving to hospice care is that it's really bringing out our different points of view. Very uncomfortable.

My aunt believes that the doctors don't know what they are talking about and my mom is not going to die from this and if we would all just send our positive thoughts into the universe she would be recovering from all these nasty complications from the meds much faster.

My sister believes that she will not survive my mother's death and there will never be happiness again. Ever. About anything.

I believe that as the chemo works it's way out of my mom's system, she will feel better for a while. Then the cancer will attempt a take-over and my mom will ultimately die. (At which point, the cancer loses forever. This thought is grimly satisfying. Cancer never wins. Never.) Then my mom's spirit will join her family and friends who have gone before her in the spirit world and she will await the resurrection. Then she gets a perfect pain-free body, as does everyone else she loves. I like my worldview best.

Still the suffering right now is hard. I spend a lot of time pondering the purpose of all this. Started reading The Book Thief, which by all accounts is fabulous, and had to set it aside. Anything narrated by Death is going to have to wait. For a long while, I'm guessing.

I've decided that it's OK that my husband under-reacts to emotional trauma. (see http://www.supermisc.blogspot.com/2010/11/his-and-hers.html) He's calm. He and God are kinda holding the world together for me.


Melanie Jacobson said...

I went through exactly this with my month. The day we committed to hospice was the second worst day of the whole experience. But hospice was wonderful. It made everything okay. Manageable. Better. I realized how entrenched we are socially to resisting death when it really is a part of life.

I'm six years on the other side of this. Still, I know it isn't easy. I wish you well.

Steve Finnell said...

you are invited to follow my blog

Tracy M said...

Prayers with you Jami, through this hard time.

Jami said...

Melanie, that's really helpful to know, actually. I had high hopes because I'd heard such wonderful things about hospice that the actual experience was surprisingly distressing.

Steve, I'll look. I'm hardly keeping up on the blogs that I already follow, but heaven knows my brain is in the wonderful world of colon cancer most of the time.

Thanks, Tracy. I think I'm taped together with prayers and pastry right about now. (I need more prayer and less pastry, decidedly.)

Kristina P. said...

Just thinking of you, Jami.

dawnthetemp said...

Oh my. I don't know what to say except my heart (the part that isn't still broken to bits over my similar experiences) goes out to you sweet friend. The wait is bitter and sobs will be a constant choke in your throat. But, yes, our faith brings perspective and that is a comfort, the only comfort. Big Hug!

Val said...

My thoughts and prayers are with your family. I have to agree with you, your view on this whole thing is the most logical and also the most comforting. It is amazing to me how a difference in perspective can make such a huge difference in how we experience reality. I have found peace in the fact that I have a Heavenly Father who loves me and wants me to be happy. So, no matter how hopeless and dreary my life can seem at times, that simple knowledge can get me through the worst of it.

Heidi said...

Our neighbor went through this a few Christmases ago with her husband. Another friend's husband just died of cancer a week or so ago. Why at Christmas? I hate that. I really hate that. I love that you are still so you, so Jami, through all of this. I wish I could do more than pray for you.