Monthly Archives: October 2017

Death on a Budget

40s are the new 40s, Addiction, Aging Parents, Uncategorized, , , , , , , , , , , , ,

Despite my well-intended delusions of gallantry, staying awake for two nights in a row just made me a useless, hot mess. And taking a nip or two from the bottle of bourbon in the kitchen during these sleepless marathons made me even more useless. So tonight I eschewed the alcohol, bought a pack of cigarettes, and let Dad propose taking half-night shifts. For four hours, I slept well, even with strange dreams of hiding myself and a bunch of children in secret compartments under furniture in order to escape some kind of unearthly menace in female form with an army of fugitive-sniffing cats. That’s a new one. I should be keeping a dream log as well as a death log.

When I left the warm bed to take my 2:00 a.m. shift, I found Dad sleeping on the couch. Just dozing, he said. Just dozing under a comfy quilt. Let’s face it, we’re not RNs or home health aides. We’re tired family members who crave our beds, with or without apocalyptic nightmares.

Mom asked my sister-in-law what happened to the local hospice facility where my grandmother had died twenty years ago. I think she had envisioned herself staying there when the time came and not in the middle of her living room being cared for, largely, by tired family members. Apparently, our local hospice facility had been shut down because it wasn’t “feasible,” its staff of PAs, RNs, and aides turned into traveling pill peddlers instead.   It’s a sinisterly brilliant way to cut corners. The professional caregivers get to keep their jobs, and the operating costs disappear. Now we have a solution that’s “feasible” because the dying can still receive their care twenty-four-seven, but in the comfort of their own homes. Oh joy.

Here’s where the plan gets more brilliant: our loved-ones definitely can receive care twenty-four-seven. Whenever we make the phone call to the emergency number on the whiteboard magnetted to our refrigerators, our questions and concerns are relayed to a nurse on call, who will call us back and answer our questions. Sometimes, if we sound sad enough, she’ll even offer to come out to the house for an hour or two—even more if we want. If we don’t call, however, we get a daily visit from a nurse (on weekdays), and a daily visit from an aide who will do the yucky stuff like bathe and change catheter bags. In a rural area like this one, where people spend their wholes lives NOT asking questions, removing the whole hospice facility from the equation is most certainly a feasible plan.

I decided that I prefer the 2:00 a.m. to whenever-Dad-wakes-up-again shift because it’s a perfect time to call that hotline and ask questions without Dad knowing I’m calling the hotline and asking questions. The very first hospice nurse I met this week stayed at our house for six hours so Dad and I could go out to dinner for his birthday. We were only gone for three, but she stuck around long after and helped Mom and counseled me. Dad, being Dad, just wanted her to leave. Me, being me, wanted the help and guidance. Why not? If a hospice is going to close down its facility and leave all the dirty work to us, we should accept as much of that help as it will provide.  We should not accept the death-on-a-budget excuse.

The nurses know this. The whiteboard on the fridge says “for emergencies call,” leaving it up the caller to determine the scope of an emergency. Luckily, I was counseled by a hospice nurse before I had even seen this semantic deterrent. Call any time, she said. No question is a stupid question, she said. That’s what we’re here for, she said. So I do, and I will, just not when Dad knows I’m doing it.

It isn’t that Dad doesn’t care. He cares a whole lot. His love is infinite. This morning, the RN assigned to our case watched him interact with her and said, “They clearly love each other. It’s adorable.” It was adorable, five weeks ago, now it’s very heartbreaking. The man needs two shoulder operations. He has a bad back. He carries around his own, permanent, catheter bag. And he just lost his brother. This is too much for him. He isn’t healthy enough, physically, mentally, or emotionally to be caring for a wife of fifty-five years round-the-clock. He needs a place where he can go that’s away from his grief, like his home. Oh wait, his home is now a makeshift hospice.

If I can do anything around here besides be in the way, and I often feel like I’m in the way, I can call in the professionals to help Mom instead of leaving Dad to do all the guesswork. I’m confused, and I’m younger, healthier, and more alert. I can’t imagine how he manages to do anything, let alone almost everything. I’m gonna keep calling that number because it helps and because I refuse the let “feasibility” and bottom-line win here.

Tiny Windows of Time

40s are the new 40s, Aging Parents, Uncategorized, , , , , , ,

I’m on Mom watch tonight. My dad thinks I’m going to wake him up at 3:00 a.m. so we can split the shift, but I’m not. I’ve determined that he is more handy during the day, while I sleep in my mother’s king-sized bed with all the windows open, sunlight and the sounds and smells of a rural fall day streaming in. I’m a good day sleeper. Dad, I have determined since I arrived home yesterday, needs a full night’s sleep more than I do.

He’s brilliant with her. I don’t know how he does it. Love, I suppose. My poor brother showed up this evening around six o’clock to catch her waking up from a four-hour doze, and she told him to stay away from her blinds. There had been talk of my brother’s changing out the blinds for more functional ones. Since her hospital bed sits in front of the big bay window in my parents’ living room, my father, at one point in the many stages of helplessness family members experience in the face of terminal illness, thought new blinds would do the trick, and he recruited my brother to do the job. After learning of this plan, the blinds became my mother’s point of reference any time she saw my brother’s face. Then Mom thought we were all sitting around her bedside in the morning, rather than at dinnertime, so she asked my brother why he had showed up in the early morning. It came out like this:

“Why are you here so early in the morning? Are you here to watch me croak or something?”

She never minced words in reality; she doesn’t mince them in terminal illness, either. Dad eventually convinced her it was evening, but she continued to press my brother about his presence in the room until Dad quipped, “We’re all here to give you a bath, all three of us.” Until she realized he was busting her ass, just like he always does, Mom didn’t give my poor brother a break.

My brother doesn’t know what to do any more than any of us. Dad has the most experience caring for Mom, but her symptoms change rapidly, hourly, in hospice. Nurses who know the most about what is happening come around once in a while and take charge and sometimes provide useful advice, but then one hour lapses into the other, and Dad and I begin to bicker about how we’ve interpreted that advice. Dad often won’t accept my interpretation.

I feel like I’m in the way. Mom wakes up from time-to-time, and I try to give her medicine (ahem, morphine), and she tells me to go back to bed, that I’m making her nervous. She’s not used to 24-hour vigilance. She just wants to die.

My friend who recently lost her mother in at-home hospice told me to tell Mom what I wanted to tell her and do it as soon as possible. Turns out that the best time was any day prior to yesterday, when I arrived here. I wasn’t expecting to see what I saw. Dad had never said the word “hospice” when I’d called him. Two weeks ago, she’d been a different woman, reading and checking out Facebook and fretting about the state of the sheets in the spare bedroom or the laundry, basically being a sicker version of her usual self. She still hadn’t tried chemo, and we all still had a little hope. My father hadn’t been forthright about how rapidly she was declining, I think because he was too busy caring for her in ways that his own frail body couldn’t sustain.

She was still tinkering around a little with her tablet early yesterday, before I arrived, which means she was tinkering around on Facebook. Last night, when I cried to the hospice nurse about how difficult it would be to tell her what I wanted to tell her because of her hearing loss, she said, “Write it. Make the font really big and say it on her tablet.” So, as I sat around on Mom duty in the wee early morning hours of yesterday, and I opened up Facebook messenger, and I said what I wanted to say. Too bad she hasn’t picked up her tablet since yesterday, and she probably never will again. That tiny window of time, while I was dragging my feet to get out the door because I didn’t want to face what I had to face, had closed quietly.

Cancer is the New Black

40s are the new 40s, Aging Parents, feeling old, Uncategorized, , , , , , ,

I upset my husband last night with a little dose of dark humor. I asked him what cancer he thought would be the cancer that did each of us in, and he knocked on the wall. Apparently, he doesn’t want to joke about dying. I guess that’s alright, but personally, I would rather think about it now than be surprised by its sudden appearance. What is death, anyway, but just a phase of life, that seventh age, “sans teeth, sans eyes, sans taste, sans everything”? We should be so lucky.

Most of us aren’t going to make it to that seventh age that Shakespeare described in his seven ages of man speech. We’re not going to die in our nineties, drifting peacefully into oblivion while our family sits around the bedside, our spouses spooning soft food into our birdlike mouths. We can’t expect our deaths anymore, can’t plan for them. They’ll just announce themselves. Perhaps our family will be sitting around us when we go, but that probably isn’t going to be in our nineties.

Cheery, no? Maybe it’s the Fluoxetine, or maybe it’s just all the preparation I’ve had, but I don’t find death depressing. For me, it is not a debilitating thought. Do I want to lose my mother? Absolutely not. Do I feel that she and I still have a bucket list the size of Texas full of items that never will be checked off? Absolutely. Is she or I or anyone in our world ready for this? No. But it’s gonna happen, and it might happen far sooner than any of us thought it would. My mother has stage 4 pancreatic cancer, a nasty cancer that has metastasized into her liver. She can’t eat. She can’t sleep. She can’t even sit up comfortably. Two months ago, we were on a vacation together in Maine. She and I walked down to the main drag in Bar Harbor, and she nagged me about how much money I spent. Now, she’s homebound, using a wheelchair, wearing great big t-shirts twenty-four-seven, and not eating a single thing. She wants to go, man. Who am I to stop her? I can’t do anything except be there for her. And that’s what I intend to do.

I remember when my dad first got prostate cancer back in 2005. I was strung out back then, and so I bawled and bawled and made my dad’s tragedy all about me and my business, and my personal regrets. I didn’t really do much to help him or mom. That was a long time ago.  I’ve since done a lot of helping. Like my recently departed uncle, I’ve showed up at hospitals with my sleeves rolled up, ready for action. What else the fuck can one do?

For three days, I’ve been wearing a tatty old dress that I bought on a road trip that I took with my mother. We spent seven days driving around Michigan together, sightseeing and driving each other nuts, and listening to the Grateful Dead channel, and bonding. It was the best vacation I’ve ever taken. In a little shop on Mackinaw Island, I bought a Woolrich dress that I wore almost every day for the rest of the trip. Somewhere, there’s a picture of me in that dress at the edge of the Sleeping Bear Dunes in Western Michigan, white sands that dropped so steeply into the shores of Lake Michigan that the park service posted warnings: you attempt to go down there, you will pay heavily for your rescue. And still, hundreds of tourists slid down those slopes and snaked their way back up the dunes. They looked like ant trails from our perspective at the top. What an awe-inspiring American vista. And I shared it alone with her. And now I’m still wearing that dress, even though the ass is worn out, and you can see the color of my underwear through the holes. I will never throw away that dress. I said I was accepting of death, I didn’t say I wasn’t sentimental.

There’s a lot of kids out there who treat their parents like shit. And there’s a lot of kids out there who are perennially lost. They need to look death in the face, stop knocking on walls. Cancer is the new black.

The Next-Day Regretsies

40s are the new 40s, Addiction, Uncategorized, , , , , , , ,

This afternoon, I was horrified to “discover” an unedited, terrible blog post that drifted into incoherence by the fourth paragraph—my very own post. I remember writing it, and I remember checking the Word .doc this morning and taking notes on it—“add transition” here and “delete this entire paragraph?” there. I DON’T, however, remember posting it. I have a void where a memory should be. Comes with the territory.

So I deleted it, just like my addled brain deleted those moments when I opened up WordPress and put some poorly-written piece of garbage out for the whole world to read (I wish). If you are one of the four people who read it and “liked” it, I thank you, and I apologize. Figures that the one post I was forced to delete got the most traffic in one day of anything I’ve posted thus far. I’m not the most effective blogger, but I sure like doing it! When I’m conscious enough to edit, that is.

I’m actually seeing an addiction therapist, and we’re making a little progress together. Today we talked about my friends. Who is a good influence, who is bad. I really don’t have any friends whom I would consider a bad influence anymore. They all kind of drifted out of my life with my ex-husband. He was the ultimate bad influence. He was cheap, narcissistic, alcoholic (my doing, he claimed), and selfish. And he brought out all those qualities in me. With him gone, all the lousy people that he attracted like flypaper are gone, too. My only remaining friends from that union went straight-edge and vegan, and their former debauched selves are unrecognizable. When we crazies put our minds to something, we really go all in, eh?

I’m still waiting for that “aha” moment when I finally go all in on sobriety. It won’t be today. I can hear the grocery store calling already. My favorite checker is waiting there to crack a joke about my odd assortment of items that inevitably contains alcohol. I’m fond of waltzing in there around 11:00 and buying things like beer and oatmeal (“Breakfast of champions!” she said), or red wine and beef jerky.

This post is also unedited, but far more coherent than last night’s. After I hit “publish” this time, the laptop is going off for the evening. There’s a way around every problem.