I can’t believe how long it has been since the last post. Might have to do some extras to catch up since so much has happened. Let’s talk about respite, a term used in hospice care to identify a relief period for the caretaker, when the patient is moved to a facility.
In December, Tom was advanced enough to handle a short trip, and I needed to go to a meeting in Florida. Hospice care chose the best facility with an open bed, and he was moved there on Monday so I could fly out on Tuesday, spend time visiting with my father and youngest brother on Wednesday, then go to work on Thursday and Friday.
While he was at this facility, our expectation was he would be assisted in the actions that take two people, and since he was in the care of trained professionals instead of a harried writer, his care would be better than he had at home.
Well, yeah. Ahem. Let’s just say he now appreciates home care much more than he did before, and we’ll leave it at that.
Skilled Nursing Facilities, nursing homes, elderly care–whatever you want to call it–are necessary. But I wonder how many people realize what it’s like to spend the end of your days in the care of strangers, at the mercy of an overworked staff? It might behoove those who have never been to a SNF to check them out some times. I’m sure some are better than others, and as I said they are necessary when there is no family available to tend to the elderly. Communes have pretty much gone out of style and our lives have become too hectic to be burdened by elder care.
So Tom came home the next Saturday, slept like a stone the first few days, and was most grateful for his morning cup of cocoa. The time away hadn’t lost too much momentum in healing, but we’ll come up with something else next time I need to go away.
In the meantime, Lex Valentine did a fabulous trailer for My Killer My Love, introducing me to a new favorite band, Chickenfoot. Black Opal Books has picked up my short contemporary romance (working title Teach Me To Forget), and we’ve had our first snow of the year. So there’s a lot more to share.
Trailer for My Killer My Love
Tag Archives: Black Opal Books
They Call it Respite
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It’s the Little Things
Anyone who tries to say only the “big things” matter has never seen their loved one eating eagerly after months of turning down any food, and not digesting what was poured into their body. They also haven’t seen that person lift their own knee, then lift their leg without any support. Little things, you say? Perhaps, but these are the steps along that journey of a thousand miles we never thought we’d take.
Last Friday Tom developed a taste for Chinese, and we have a very good Chinese restaurant in town. First it was hot and sour soup, then after a few days of that, eaten in small doses, he asked for cashew chicken. That took two days to eat. Especially since he was also eating tapioca, some fruit and (ahem) ice cream.
Along the way he was also moving parts of his body. Foot flexes, pull ups on the overhead bar, twisting back and forth in the hips and shoulders. Lifting his middle off the bed and holding it up.
Doesn’t sound like much, does it? Except he’d been pretty much flat on his back since May 22. After every other surgery he was up and cruising the halls the next day. Somehow this time he hit the bed and stayed there. The nurses called him unmotivated and lazy. The doctors called it failure to thrive. I hate to say it but sometimes I wanted to agree with them.
Until I brought him home, and gave him basic simple food, the opportunity to look out the window, and set the option of survival squarely on his shoulders. He slept a lot at first, and there were days of extreme fright when nothing seemed to work right and I faced a learning curve of immense difficulty.
Then today, with the help of the visiting nurse, he sat up, and we swung his legs over so they could dangle off the side of the bed. Those in bed maneuvers had made him strong enough to hold himself straight with just a little help. So much for being told it would take multiple people assisting for him to ever sit up again.
The little things.
Then there’s my NaNo book, oops, that really is a little thing. Time to stop basking in the glow of the husband getting better and crack down on my word count. I challenged my very clever niece to a NaNo showdown and she’s leaving me in the dust!
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Life: the Good, the Bad, the Wonderful
Three weeks ago today, hospice care delivered a hospital bed to our living room, and life as we knew changed dramatically. The acute care hospital doctors had advised there just wasn’t anything else to do with Tom but “make him comfortable,” since he just didn’t have that much longer. He couldn’t swallow safely, they said. He couldn’t digest food, they said, so he couldn’t take in enough nourishment to heal beyond what he’d already accomplished. Even if he could digest, his appetite was non existent. Besides, they said, survival for a Whipple procedure is abysmally low.
So he came home, where he could look out at the high plains and eat “whatever he wanted” for as long as he had left. He immediately started to eat very small amounts of egg custard, fruit, and non gluten foods, and I accepted whatever time was blessed to us. Except the anticipated two weeks went by quickly, and he was eating more of those small meals. A few blackberries or strawberries. Half of a non gluten toaster waffle. We found out he couldn’t deal with dry food (such as a biscuit) and his digestion wasn’t processing much meat.
Because his digestion was processing. The canned liquid poured into his feeding tube had gone straight through him, do not pass go, do not collect those $200.00. My suspicions of an allergy were dismissed, since this was the most digestible food available.
Yeah, right.
This morning when I asked if he wanted blueberry pancakes (thanks Bisquick for the non gluten baking mix,) he didn’t just say “Yeah, okay.” Instead, after far too long with no appetite, he started to fantasize about pancakes with lots of butter and syrup. Which he got, though the syrup is an agave/maple blend. And he ate most of a small pancake with gusto.
The processing continues now at a regular rate. I know it seems odd to be excited by the end result of digestion, maybe you have to be a nurse or a dog breeder to get really excited about quantity, consistency and color. But anyone who has not processed a meal correctly knows the colon rules.
Today I’m putting a pen in his hand and giving him a pad of newsprint so he can start drawing exercises. If he’s going to heal, he’s going to draw again. In the meantime, in between meals and clean ups and shifting dogs around, it’s NaNo–National Novel Writing, where writers around the world put rear in chair and fingers on the keys to pound out at least 50,000 words of an original novel. I’m working on a book related to the one I just signed a contract for.
Tom's t-shirt design for 2003
If you don’t hear much from me for the rest of November, I’m working on my book, or cooking something else that makes Tom happy. Or maybe putting in a few hours with my wonderfully patient employer. Life isn’t perfect, but it is wonderful.
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Why Do We Write What We Write?
Might as well ask why we read what we read since for many of us they are inextricably linked. We write what we enjoy reading. I was reminded of this recently during two discussions with non romance readers. The first one asked me to define exactly what sort of books I write, and if “romance” is a long story with some hand-holding, a short story with hot sex? She went on to explain her local librarian has been trying to convince her to write what she calls a romance novel – sort of relationship in the 1800s with a sex scene thrown in about every 40 pages. I sent her to RWA’s website for an idea of the professionalism involved in our genre, and had to point out her librarian is a literary bigot.
The second discussion was less abrasive. A non romance reading friend read My Killer My Love, and was surprised how much she enjoyed it. Up until now her opinion of romance hasn’t been very positive, and the idea of a heroine with glasses and a limp intrigued her. She asked me what I would write next and how I decided what to write.
These past few months I’ve devoured books of all sorts. I’ve read Jim Butcher’s entire Furies series along with the latest Harry Dresden. I’ve enjoyed Tara Lain’s Beautiful Boys and Rebecca Forster’s chilling “Before Her Eyes.” From the moment I first sat in the Emergency Room with my husband I’ve had a book or Kindle in my hand, and I’ve used the words of other writers to help me get through the days. During procedures I filled my time and my worried mind with flights of fantasy and allayed my fears with tales of love everlasting. The often silly, sometimes implausible plot points distracted me at times when I wasn’t ready to face the reality of our days.
Why do I write? I write so someone else can have those few hours of immersion in a story. I write so they can temporarily forget the stresses of their lives and briefly become a part of the lives I created in the pages of my book. Perhaps some of us write to be the next Nora, the next Jayne Ann, but for the most part we write to share what we are with anyone willing to share the worlds we lived in for the months or years it took to create the story.
I write—we write—to give someone a distraction while waiting for news of the tests, or as they sit in another uncomfortable chair during procedures, wanting to be there when their loved one goes past, to let them connect with the world waiting for their return. Those scenes and dialogue and setting pour out of our hearts onto the page, sometimes easily, sometimes with great effort, to be sucked up into the minds of readers and allow them a few moments to enjoy something other than the unrelenting sounds of a hospital.
I write because too many stories clamor in my head for release onto the screen. And I guess I write because I can’t not write.
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Mona Karel Author 