You really don't know what you don't know

Death, elder care and how not to kill your siblings.

my parents circa 1943

(This is from an essay series I wrote in 2016)

My mom is dead. And that’s just the beginning.

It wasn’t a shock, she was 88, but it was sudden. And terribly sad. She was okay, and then, she was not. She didn’t have a fall, she wasn’t fighting an illness. She took no medication. She still drove to a diner and had greasy eggs, grits and burnt coffee every morning. She still read the newspaper. She kept me up to date on current events. We had been shopping for a walker on my last visit and I was admonished for making her look ‘old’. Her knee was not stable and she had started walking by holding on to walls and short tacking the perimeters of rooms. Certainly the walker would be an improvement? You don’t know what you’re talking about. I’m fine.

July 12, she went to take a nap. She never got out of bed again. She died Oct 18. The middle part? The part you’re not prepared for even when you’re prepared? Hardest three months of my life. And I know now. I wasn’t prepared for shit.

For most of my life my mom and I talked on the phone two times a day every day. 6am while I walked the dogs and 7pm when I was taking a break at work. We had lots of laughs (at my expense) and she enjoyed my newest stories about how I was (not) transitioning (very smoothly) from chef and restaurateur in Atlanta into homesteading chicken farmer in the Hillbilly Hamlet of rural north Georgia. A perfect audience, she was. Available, focused, undivided attention, a good sense of humor and waiting for the next chapter. Anyone who’s ever tried to connect with a distracted friend calling you from the car whilst squeezing you in between appointments, knows what a treasure a good listener with a landline is.

My new lifestyle was full of comic material. Raccoons who beheaded chickens, roving bands of stray dogs and bible sellers, Guatemalan farm hands, locking myself in the coop and crawling out of the hen house through an 18 inch poo covered hole. City girl moves to foothills of Appalachians. The story nearly wrote itself.

The youngest of 5 kids, I was one of those late in life babies that everyone calls a ‘surprise’ (if they’re well mannered), a ‘mistake’ if they’re not. I grew up like an only child and was super close with mom. We were dear friends more than parent/child as I became an adult. I was a living baby doll for her when I was a kid. The perfect foil to empty nest syndrome and a 20 year marriage. A baby at 40! Let’s dress up, go to lunch and see a Gene Kelly film at the Cinefest!

Mom grew up in the 1940s so I got to relive the entire era one Tommy Dorsey tune after another right in the middle of those groovy 70s. The school year was just something that happened between fun summers of culturally adult activities. My dad still lived there too, but he was an interloper. A huge buzzkill and a drinker, the best part of the day was when he went to the office and I could tuck into my pancakes with the smiley face chocolate chip patterns and sing songs with mom and my dog. Spoiled? I guess. But you don’t know it when it’s in progress. It’s like a (lucky)abuse. I spent decades trying to understand that it wasn’t my fault but my older 17+ years siblings don’t know me and don’t like me.

As life advanced, I left the nest too. Lived all over the place. Had all kinds of jobs. Traveled around the world alone and dated the kind of foreigners who make parents who fought in wars for their country, very uneasy. I opened restaurants and didn’t marry and didn’t have kids. Mom was pleased with all of these choices. She was a most underwhelmed grandmother. The siblings had made ten additional offspring and mom used to say, well, good for them. I’ve paid my dues. Dad died in 2007 when I turned 40. So like always, it was back to her and me.

As she crossed the threshold to 80, she made the trip to my farm in Georgia. We talked about her having a room in the house and we arranged furniture and decorated, an obsessive hobby we shared. What about the chaise over there under that lamp for reading? The farm house was all on one level, it was perfect with that gimp knee. I pressured her to think about moving in with me while she still could. She said she’d think about it. Not yet, she’d say, someday when I’m old. Sure her house was too big for her alone and the stairs were getting tricky, but she wanted to make sure I knew she wanted to age in place. My own bed. My own toilet. No strangers. It broke her heart to see her mom and sister in nursing homes in their final years of life and she didn’t want to go like that. Promise me. No assisted living homes.

I promise.

To make sure we had everything covered there were estate attorneys and lots of papers and directions for every conceivable situation. There were medical care directives (DNR) and funeral arrangements (none) and signatures and back up beneficiaries and joint bank accounts. I had been appointed Trustee and Executor a decade before so I was doubly prepared. I flatter myself by thinking that they chose me for my business acumen but it’s more likely that I was young enough to still be alive when they were old. The oldest brother had already died from a brain tumor he discovered after a marathon. I was the last best chance. Don’t complicate things. Your brothers will complicate things. Call the funeral home. Have them pick up the body. Get the cash out of the sock drawer and take my jewelry off. Get me cremated and put me in the Murano glass jar with the copper lid. Donate all this crap and sell the house. Split it with the other kids.

Of course no one prepares you for what really happens. Because they can’t. We had the Before and the After handled but the Middle was always shrugged off. What If You Get Sick? I want to stay in my own bed in my own house! What’s to know?

Turns out, what I needed to know was how to care for someone 600 miles away. How to relocate in an hour and deal with non communicative obtuse siblings that I didn’t know (or want to). How to change an adult diaper and keep up with sheet laundering when said diaper was removed by the woman previously known as my mother. I could have used a class and a therapist on how to satisfy the whims and demands of early dementia and the emotional abuse that often rides shotgun with the insolent twins of Batty and Octogenarian Toddler. She went to ‘take a nap’ and was still in there six weeks later, I had a hard time wrapping my brain around that. Oh you’re being dramatic. I have not been in here that long. She stopped eating, drinking, answering the phone, reading the paper, using the toilet and showering. She went from spry to invalid in a day. This was not covered in our Family Trust documents.

We were, however, forbidden to take mom out of the house. No doctors, no nursing home. Specified in her Medical Directives was a DNR (do not resuscitate) but The Don’t Put Me in a Nursing Home God Damnit clause was only verbal. Like a Don Corleone verbal, we didn’t question it. I would have caved and gotten professional help sooner, I know when I have to tap out, but the next oldest brother is the kind of loyalist who thinks a promise is a promise. To the end. He’ll never break.

It should be noted that I sort of believe that a promise should be honored so long as you aren’t doing harm to yourself or ruining the lives of your prime of life offspring because you are afraid of doctors and now you’ve got dementia and aren’t thinking clearly. Also, you’re throwing shit on the walls like a chimp and if not monitored could try to get up and crash your head on the glass table and bleed out. No one needs to find you like that. Promises, like the Constitution need to be amended.

The other two siblings didn’t have a dog in this fight apparently. Work load, in laws, distance, bad timing — the care and tending went to the youngest and the proximate. In hindsight, that was a blessing. More cooks never unspoil a broth. Especially when one is a militant military know it all who makes little sense outside of his bubble and the other a Californian who thinks it would be better if mom would start drinking fair trade coconut water and avocado smoothies. We tried to keep it simple the other brother and I. He would come to town with his traveling job once a week and schedule nurses, cooks, babysitters, caretakers and whatever health care we could sneak in the house to keep mom comfortable, clean, fed and monitored. We had round the clock care from a carnival of friends, neighbors, cleaning people and some actual nurses. It takes a while to unravel the paper work and get Hospice in the door and even longer to figure out Medicare. And since we weren’t allowed to talk about What If You Get Sick, we were hiring, interviewing and scheduling in the moment. It was not ideal. And everyone had lost their sense of humor.

I handled finances, bills, insurance, invoices, paperwork and real estate as usual. We were on a need to know basis with each other, the brother and I. When we spoke, I would ask him why he was such a dick and he would tell me that I should stop being such a worry wort. She is dying. Deal with it.

He answered my 12 line texts and panics with one word responses.

“Understood.” Shockingly he’s been divorced 4 times.

She stopped answering the phone in August. By September, the new maid started answering. “She’s sleeping…” and I never really had her ear again. When I heard that Hospice care had been ordered, I packed the dogs in the car and started on the 10 hr drive to Florida, because I knew the end was near. I have no experience with this, but I’ve never gotten the impression that Hospice lingers. She died as I was passing Tifton.

The Brother called and said, “it’s all over. You can circle back to Georgia if you want. They’re coming to pick up the body. I’m going to the airport. I have to be in Cleveland this afternoon.”

“I’ll be there in 3 hours. Can’t you wait?”

“For what.”

My mom is dead. That is just the beginning.

(Next: The Trustee. A Thankless Job, But Someone’s Gotta Do It, what no one tells you about for the job you’ll never have again)