Monday, December 16, 2013

well, shit.

Literally. Now comes the long-awaited journey of incontinence. It was bound to happen sooner or later, though I had hoped we would have hospice or some home health help before that point.

I haven't written here in a little while--things have been busy.

Mom is increasingly weak and constantly fatigued. She spends all day in bed--and I mean all day. Last night was her last dose of chemo this round and I'm hoping that we can get hospice in now as they can't be called in if the patient is still on any aggressive curative treatment [added to the Practical Tips post here!]. She is understandably on the fence about hospice. In her mind it is synonymous with death, as it is for most Americans. What I've learned, though, is that every single person who writes or talks about hospice says the same thing: "I wish we'd done it sooner." Hospice is a part of the journey, not it's end! There is still life after stopping treatment, and the patient might even feel better without so many drugs in the system. No chemo brain!

Throughout this whole thing I've kept strange hours; sleeping in late because she does, staying up late because the wee hours are the most peaceful here. Now I'm followed by the constant hum of a baby monitor. Hum isn't the right word, though. The default static that comes through is low and constant, a little scratchy, like holding a conch shell to your ear. There should be a word for just that sound. Because of her weakness, and her weak voice (did you know that is a side effect of Avastin?), I picked up a baby monitor set at Habitat for Humanity ($5!). I leave it on my nightstand at night to charge, and take it around the house with me during the day. Just like a mom. (On an unrelated note, here is a very interesting short essay on not having kids). I'll be adding the baby monitor to that list of Practical Tips, too.

Good things.......well, my godmother/mom's best friend visited again. We absolutely love having her here. She's full of energy and has a beautiful healthy laugh. She was determined to get me started on some projects in the kitchen (my defense/coping mechanism is home improvement) and she succeeded. Twelve years of avocado green plaid wallpaper (with matching drapes), and now it is all painted a fresh, clean beige. I've removed the soffit from over the sink to add some height and am currently in the messy "slather it with joint compound and sand it all away the next day" phase. Up next: paint the cabinets or install the new flooring. Can't decide where to start.

Another good thing: sold mom's car! It has been sitting there for a year. Excellent car, clean, low mileage, just sitting there depreciating. A friend of a friend's grandson is turning 16. Happy birthday! And thank you! We really needed that money.

Possible good thing: somehow I survived I needed to lower mom's premium (I discussed earlier how it would have doubled next year) as well as get my own health insurance. I went through the process on the phone with a very nice young man who, at the end, said I wasn't eligible for tax credits or cost-sharing. Um, what? I'm unemployed, dependent on my permanently disabled mother whose only income is SSDI...aren't we the poster children for the Affordable Care Act? So I went online and did it myself and, lo and behold, the two of us will be getting excellent coverage for $70 a month...that includes both of us....$70....Obamacare, how do I love thee? Let me count the ways...and let me pray there are no red tape hiccups or hidden fees.

My dad visited. It is an innocuous statement for anyone who doesn't know my family. Long story short: my grandparents basically disowned him when he left my mom. Mom and I moved in with them (her in-laws). They became the closest family we've got. Lots of tension, lots of water under that bridge. He wanted to see mom, to apologize, and to see his parents. I never thought I'd see the day when we all sat down for dinner together. It was truly surreal. Damn does life change fast.

It's now been almost 14 months since mom's craniotomy. Her cognitive abilities continue to decline in the sense that she seems to process things extremely slowly, or not at all. She is terribly weak and often needs help sitting up, getting out of bed, and definitely getting in and out of the tub. Increasingly incontinent, as noted above. She still has moments of emotional clarity when she experiences intense sadness, but I think these fade quickly, thankfully. With the discovery in the ER of new emboli, she has been taken off Avastin (which can increase chance of clotting) and Lovanox (which apparently wasn't working). She is now on Pradaxa, a different blood thinner that, of course, does not have a generic. We have another MRI in about a week, and meet to see the results on Christmas Eve.

Image: I read Marvell's "To His Coy Mistress" again the other day, first time in years, and I still love that line "But at my back I always hear/Time's winged chariot hurrying near." The image is from Dali's Divine Comedy series, Purgatory Canto 26. I feel that they work together.

1 comment:

  1. My heart goes out to you. I'm sorry that your mom is sick and caring for someone who is ill is draining and sad in so many ways.

    My darling mother in law had the same affliction as your mother. Surgery was never an option for her. She's been gone for 6 years now, but I remember very clearly how it was for my husband and his sisters caring for her. You know, they aren't all bad memories, either.

    I truly wish peace for you and your mom.