Friday, April 25, 2014

nightmare





This morning, for the first time in a very long time, I had a nightmare. There were many components that would make for excellent dream translation fodder, but the important thing was this: in my dream I was arguing with someone. I had apparently scratched his truck. Mom was there defending me. As the argument grew louder, I shouted at him that I had just left my mothers' funeral and, for christ's sake, would he give me a freakin' break.

First of all, we didn't have a funeral for mom, and while I'm sure there's a lot to be read into that, it isn't what I wanted to share. It's that in my dream my mother was both alive and dead. It's the very core of my psyche/subconscious/etc processing the fact that something so permanent has disappeared. That existence has been changed irrevocably. Try to imagine not having one of your hands, by birth or accident, whatever. And now imagine that you're dreaming about clapping at a baseball game, all the while talking to the person next to you about how you lost your hand. It is very plainly, at least to me, the processing of trauma. I studied psychology for years, read all about phantom limb syndrome, PTSD, so on and so forth, but to experience it is something else entirely...



Image: John Henry Fuseli's "The Nightmare," 1781.

Tuesday, April 22, 2014

paperwork

Although North Carolina has a handy pamphlet for those new to executing estates, it is comprised mostly of legalese copy and pasted from NC General Statutes. I thought I'd share here the process I have gone through involving the court to help others. So here goes my attempt at simplifying the probate process.

Below I've included the numbers of the forms here in NC. If you're confused about something in your own state, you can look these forms up online (just google the number) and it should help to clarify your own process.

1. From your funeral home or crematorium you need two important things: a copy of the paid funeral bill, and one or more death certificates. Expect to pay around $10 per certified copy. You will need several of these, but the number depends on how many accounts, properties, etc the decedent owned.

2. Go to the county courthouse and find the Estates office, usually around the Clerk of Court as it is under its purview. Bring at least $200 in cash. Yes, it costs money to file these damn forms.

3. Forms! I did the following all in one sitting so they might not be ordered appropriately below.
---You will file a very easy form called Certificate of Probate, NC form AOC-E-304. You will need the original notarized will as well as a certified death certificate.
--At the same time you should be sworn in as the executor or executrix. The necessary form is called the Application for Probate and Letters (NC AOC-E-201). It will ask for some basic info about the deceased.
--The next form for this part is Oath/Affirmation, (NC AOC-E-400).
--Finally, you file a form called Order Authorizing Issuance of Letters (NC AOC-E-402).

4. Whew. So now you should be dandy and the deputy clerk assisting you will give you Letters Testatmentary (NC AOC-E-403). You will want several of these--this is your legal proof that your are the executor.

5. Now what? You need to file a notice to creditors in your local paper. Ask the deputy clerk about this as it might be different in other states. In NC it has to run for 30 days, then a notarized affidavit is sent to the executor and the court. Bring a copy of your Letters and the death certificate.

6. You also need to fill out and file the Inventory for Decedent's Estate (NC AOC-E-505). This is exactly what it sounds like. All the accounts without direct beneficiaries, household goods, etc. I believe you have about 3 months to complete this and return it to the Estates office. While you're there again (bring cash), make sure they received the affidavit from the newspaper. If not, have them make a copy of yours. While they're at it, have them make a copy of the paid funeral bill (they need it for their files).

7. So, even though the whole notice to creditors thing should have been covered by now, there is a form. It is called Affidavit of Notice to Creditors (NC AOC-E-307). This basically says you tried looking for people to whom the decedent owed money (i.e. the ad in the paper). Boom. Easy.

8. You'll file an Estate Tax Certification (NC AOC-E-212) with the deputy clerk as well. The details of this may vary by state, but it determines whether or not state Estate tax is due.

9. Finally (as far as I know) you'll file the Final Account or Annual Account (NC AOC-E-506). This wraps up the probate process. It takes the estate's worth from the original inventory and adds/subtracts anything that has happened since you filed that inventory. So, if you had to pay an ambulance bill, that would be subtracted from the estate (assuming you paid from an estate account, which you need to set up with the decedent's bank). Keep proof/receipts for payments made to creditors--the court would like copies included. I believe you have about a year before this annual account is due.

And that, I hope, is everything for the court. Financial and tax stuff are another matter....

Monday, March 31, 2014

the end

Mom died a little after 4pm on January 29th. I was sitting by her side playing a computer game, but she had been unresponsive for a couple days so I'm not sure if she knew. Every few moments I would look over to check if she was still breathing, as it had become irregular over the previous few days. Sometimes she would stop for a few moments, then start again. I watched her chest but it didn't rise. I sat next to her, put my hand on her chest, took her hand in my other. Her fingers were blue. I don't know why but I took a picture of them. I cried a bit, tried to close her eyelids or her mouth, but she'd become too gaunt and they remained slack. I stepped into the hall of the hospice facility and asked the nurse to come check mom, but she knew what I meant.

Friends and family have come and gone, mom has been cremated, her ashes are still in the plastic box from the crematorium, sitting on the kitchen counter. I've started the estate process, cancelled accounts, transferred assets, taken inventories. It's been two months.

I've learned a lot over those last two months, and this blog was supposed to help others in the same situation, but it might be a while before I can collect my thoughts and turn them into something useful to others. As of right now I'm absolutely useless.

Saturday, January 25, 2014

to cry out and be held





Almost two weeks ago the hospice nurse and I decided that mom should transfer to the inpatient facility; I was quickly becoming unable to care for her physically, limited by my strength and size. That afternoon an ambulance came and brought her here, to the Hock Family Pavilion, one of Duke Hospice's inpatient locations. It's beautiful, the people are wonderful, and it's close to home. Mom was foggy and that first day said she was a little scared so I stayed the night in her room on a cot. It's hard for me to write that now as it has been days since she has been able to speak, or communicate in any way, really. She opens her eyes occasionally but doesn't really see me. I speak to her (they say hearing is the last sense to go) and ask her to squeeze my hand, but it doesn't happen. No more sleepy smiles, either, when the nurses come in. This is creeping death.

It could come at any time now, they say. I suppose I should be sleeping here, or spending more of my day here, but I haven't. And maybe there aren't any "shoulds" when it comes to watching a parent die. I spoke yesterday with one of the social workers here and told her it was remarkable that we don't have a more streamlined process for the dying. It's bulky. Cold bodies moved around, so many papers to sign, accounts to cancel, the bevy of supporters from whom you know you can't possibly ask anything.

I speak to her, tell her about my day, that people send their well wishes. I tell her about how the cats are driving me nuts and that I've started dating a nice boy. I tell her that he bought flowers for her, but I was too much of a mess to bring him here to say hello, even if she couldn't hear him.

I wanted part of this blogging project to include helpful tidbits that I wish I'd known along the way, but right now I'm not sure what I could communicate. The logistics of brain cancer had been such a distraction. Perhaps another time I will be able to write about hospice and making final arrangements.


Image: Jean-Philippe Charbonnier's 1954 photograph of a wailing woman in a Parisian psychiatric hospital.  Link.

Sunday, January 12, 2014

bump in the night





I heard a thud. I ran to her room shouting "mama?!" No reply, but when I rounded the corner I found her awkwardly jammed between her door and the closet; something between the full locust and the camel pose, for those who know anything about yoga. I don't. I just looked it up. She looked like a fish. No, a whale. They way they flip back after jumping from the water. She was bent the wrong way, her head facing the ceiling and mashed against the door, her body curved backward so that the front of her hips rested on the floor, her feet behind her against the closet. I thought for sure she had broken her back--it didn't seem a survivable position for a healthy person, let alone someone so weak. I was able to lay her down, but on her stomach, and she refused to move. She wouldn't or couldn't tell me where the pain was. She turned on her side and let out a raspy sigh. Her eyes were glazed and she was staring at a point past the wall, not uncommon. In that moment, though, I truly thought she had died. I thought she had died contorted like a dolphin yogi after falling in her room when I was twenty feet away.

The hospice nurse is on her way. It's 11:30 pm on a Friday, but like they told me, "CALL HOSPICE FIRST." 

She's back in bed now. Apparently the pain was from extreme constipation. Last month it was puddles of diarrhea on the floor, now it's back-breaking constipation. 

"Could've been worse," she says. Things could always be worse, I suppose, but not much more than this. Yeah, this whole situation it pretty awful.



Image: Caspar David Friedrich's "Wanderer above the Sea of Fog," 1818.  This is how I'd like to feel.

Thursday, January 2, 2014

warped





We've finally moved from treatment to hospice. It's had a much greater emotional impact on me than I thought it might. Life has pummeled us this last year, yet only now does it feel real. Incredibly real, perhaps because of the unique experience of watching your mother die. In fact it sort of crashes through the walls, the real coming out the other side, almost surreal; a mobius strip or the impossible triangle...so simple and so complex.

What has been hurting the most lately is that I can't remember what she was like. She's still alive, and I can't even remember. She's changed so drastically, and I've such a bad memory. I try to imagine how she used to talk and behave. I can't. I don't think I even have any videos. I'm not sure if it matters. My rational mind is freaking out, wondering why I can't get a grip. "Death is," it says. It happens to everyone, it happens all the time, it happens violently and quietly, it has happened for billions of years, and might continue for billions, so why, my rational mind wonders, have we not evolved to grasp that fact, to hold onto it, to understand the ubiquity of death? Such is life that it ends...it's so simple, so why does it feel so shocking?



Image: M.C. Escher's "Convex and Concave," 1955.

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 healthcare.gov. 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.