Saturday, January 25, 2014

Home Hospice, Week Two

The "New Normal" involves a lot of cleaning and cooking, as it turns out. And hallucinating. Not about cleaning and cooking, though, and not by me. It also involves friends, comfort food, pain management, and mindless entertainment.

Last Saturday we had our Hurricane's breakfast, but not as usual. Good friends brought Hurricane's to us. We sat around our little table, sharing a bowl of 'tater gems, nattering away, feeling grounded and warm and safe in the comfort of friendship and familiar food.

In all its greasy glory.

Sunday's laundry day, but I didn't want to leave Asa for the 90+ minutes it would take, even though I was pretty sure he would sleep the entire time I was gone. I asked another friend if she wouldn't mind visiting with him while I got that chore out of the way. She was delighted to help. They had a lovely time, and as a matter of fact, two more friends popped in to visit. After they left and I got the laundry squared away, we went for a walk & roll in the park across the street. I enjoyed wrangling the giant wheelchair. Gave me an upper body workout for sure.  Asa was pretty tired by the end of it, but very happy, too.

Monday I had my last doctor's appointment for the foreseeable future. Our social worker came to sit with Asa while I was gone, and our regular nurse visited at the same time. He's holding steady with his vital signs, although his abdomen is increasing in girth. It may be possible to have a portable ultrasound here at home, as well as the paracentesis procedure, if it's necessary. That's an enormous relief, knowing we won't have to drag him out to the hospital again.

Tuesday we went for a walk & roll to our bookstore - it's less than two blocks from here and I wanted to make sure no windows were broken and that the pipes hadn't frozen. When we got there, he had to stand up out of the chair for me to hoist it up onto the sidewalk and in through the front door. He walked all the way to the rear of the store, then back up to the front counter, supporting himself with the bookcases. I checked on the heat and plumbing as he did that.  He wanted lunch from Hurricane's, so after some struggles with the uneven sidewalks on the way there, we managed it. I left him parked outside in the sunshine while I ran in to place the order. I came back out to wait with him, and Greg - the owner of the place - came out to chat until the food came. We hiked on home, ate our lunch, and Asa was completely spent.

From the MGM website.
We've been running a "Stargate SG-1" marathon for the last few weeks. Asa said it's the best thing, because he dozes off frequently. Since he knows the characters so well and the story arcs are all very familiar, he doesn't feel like he's missed anything when he wakes up. I've been sitting beside him, crocheting. Hats. There's a stack of them on top of our dresser now. Crocheting is an excellent stress-reliever, but when I ran out of yarn, I picked up my bead embroidery again. It's meditative for me.

Messy, but meditative.

Wednesday we had a quiet morning. We talked about how I felt the need to try and make some income - even though we have enough in savings to see us through for some time. Asa has always been my biggest fan and loudest cheerleader when it comes to my odd little art, and he encouraged me to re-open my Etsy shop.  After writing descriptive copy and taking a few new product photos, I did just that. I thought, even if I don't sell anything at least I feel better having made the effort. Much to my stunned surprise, I sold one of my boxes almost immediately (thank you, CD!!). And that sale bought the groceries for this week. A very good feeling indeed.
"The Darkness Is No More"

Then there was Wednesday night. I can't really explain it. It felt like a cloud of panic descended on us both. Asa started coughing, moaning, hurting, vomiting. Common sense took a hike. I phoned the on-call nurse and could barely choke out what was going on and what I needed. I managed to get it across that I just needed someone to come and take his vitals, which would go a long way toward easing both our fears about his state. She came, checked him over, and reassured us immeasurably. We calmed right the fuck down. She gave me a really handy list of symptoms and what I can do about them. Knowledge is not only power, it's peace of mind. I found my quiet, reasoned core. I'll be the first to admit, though - my zen center is more chewy nougat than marshmallow.

Thursday the regular nurse came by a little earlier, just to follow up on the previous night's doin's.  She ordered some prescription refills to be delivered Friday, and also gave us the go-ahead to up the dosage on his pain meds. We went over which drugs to administer when the others don't get the job done. Very good things to know. Late in the afternoon, another old friend dropped in for a quick visit, and that was good, too.

Friday morning, Asa felt pretty clear and said he could handle being alone while I blitzed the grocery stores. I was there and back in no time. We had a quiet, sweet day as I beaded and he dozed and SG-1 saved the galaxy at least four times.

The drug refills were delivered by FedEx. When I opened the package I came to another Hard Stop. The refills were for two weeks' worth. This is standard procedure for home hospice. Two weeks at a time. Life comes down to that. Fourteen days at a go. Reality checks suck. They suck HUGE.

The only way we're gonna get through this bitch is by staying present-centered. There's no point in getting nuts about what will happen. Regrets are a waste of time and emotion. All we have is here and now. All that really matters is love in the present tense. Love and friendship. And tater gems. Oh, and mini peanut butter cups.
Thank you again, K&G!!