Risk Assessment

After work today, I took Ben out to practice driving on busy and twisty roads. He did a great job of staying in the middle of the lane. He maybe needs to look up and see the traffic light ahead is red. Or yellow. Really, he should just look up. He went faster than he’s ever gone. At no point did I feel like I was going to die, although I did brace my entire body against the seat and the car frame. Twice.

When we got back, I checked my texts to find this photo and many smiley emojis. My dear child, 22 years young, with her first major purchase. I called immediately. Did you know you can get your motorcycle license without ever riding a motorcycle on a road? No? Me either. She stalled out a bunch of times driving it home, and learned that car drivers aren’t into that. She’s excited and happy, and uncertain and cautious.

I’m thinking about risk assessment. Years ago, Mark was talking to me about his engineering work and explained how a part of equipment design is to “fail to a safe state.” This always made a lot of sense to me. I liked the idea of life working this way.

This may be possible with machines. With a life?

Keeping it Real

Good friend keep encouraging me to keep it real. I by default am an optimist. I am an under-reacter, and slow to frustration or anger. So here’s a tale I can tell through the keeping-it-real lens. And real is, this is frickin’ hard in about 18 different ways.

I woke up at 6 am after a terrible sleep. I left at 6:05 am and picked up Mark from his senior living home at 6:20 am. He told me stories about him being 65 (off by 9 years) and other odd tales on the way to the hospital. CT scan, followed by neurosurgery appointment. All is fine. Except a little air in the brain (umm…what?). His surgeon was pleased that no cerebrospinal fluid had leaked from his nose (umm… did you mention that concern to us?). While waiting at the hospital, the short-term benefits org called Mark and after he couldn’t answer a couple questions, he fortunately was willing to pass the phone to me so I could make sure his short-term disability benefits are extended. Mark also explained that when he looks at me with his right eye, he sees a fuzzy grey blob. This is fairly accurate to how I feel.

Left the hospital and headed to the grocery store per Mark’s request so he could stock up his little (cooking-free) kitchen. We were back to his little apartment by 11 and napping by 11:05. At 11:30am, we wake up to a knock on the door by the intake nurse for the home-health team. Yes, he has blood pressure and a pulse and needs PT and OT. Oh, he has a 99.2F fever? Didn’t know that. Then, kiss goodbye and off to pick up Matthew early from school for a pediatrician apptointment. Then a phone call with neuropsychology about two appointments scheduled for October.

I talked to a dear friend who is going to call the oncology nurse navigator to follow up on a few things. Like getting free rides to cancer-related appointments from the American Cancer Society. And getting a more detailed pathology report to send to another oncology doc at Memorial Sloan-Kettering. She’s also going to try to find a mobile notary for me. That’s really helpful. I’m grateful.

I’m trying to find someone to be with Mark for his 10/4 chemo appointment. Striking out so far.

Plan for tomorrow – phone call with social security to start a disability claim process, check with his home to see if his transport is set for Wed’s ophthalmology, make sure my beloved folks know where to meet him, make sure Matthew has a ride home from Speech & Debate team and a ride to and from fencing. And work a full day.

KMRK

“Hey Diane, how’s your week look?” Thanks for asking. Our station is tuned to Mark 24/7 still. In no particular order, he has a CT scan, MRI, blood test, opthamology appt, neurosurgery appt, home health nurse intake assessment, PT and OT. So, ya know, busy.

A Little Girlfriend Time

I had no idea how depleting being a caregive could be. You lose yourself of self very, very quickly. I’m so very grateful this morning for my amazing colleagues who two weekends ago whisked me away for an amazing 24 hours of great food, goofy magazines, a hike and a massage, hot tubs and hot springs, eavesdropping on weddings, and lots of laughter. How did I get so lucky?

Family Saves the Day. Again.

How’d I get so lucky? My super hero nieces and nephews and the man responsible for a parental chunk of their awesomeness came and saved the day! Our plot in the community garden, which became a hellacious weedscape during this nightmare, is put to rest for the season. A hand railing warmly invites all those who need assistance to come to the front door (or leave). Our trash can is no longer precariously perched on a slope, and the fence posts are no longer a rotting mess. (Although there were some beautiful lichens fruiting on them today!) Plus, bonus! Great Niece Ellie gave lots of smiles to brighten the day. I am humbled and grateful to have these amazing humans come support their old aunt Diane. 

Season of Mark

I’m super tired. I’m also thankful for so many many things, most of all tonight the innumerable (well, I could count them if my brain was more functional than it is right now) kindnesses that have been extended by so many family and friends during the Season of Mark. From the meals to taking the boys to appts & events to my grass being cut to my delightful Nest camera to furniture for Mark’s new abode at a senior living facility (move-in date tomorrow) to visits to How’s Diane’s Sanity check-ins to visits with Mark to helping think of things to ask doctors to helping find resources …. if I haven’t thanked you, please know that in my head I have many, many times. The old adage “it takes a village” has never felt more true to me. I am sustained by you. By all of you. Thank you.

Senior Living

The quest to find a next placement for Mark is time consuming and stressful, but it’s been made better by a consierge service that skilled nursing hooked me up with. It’s paid for by senior living facilities that want you to choose them for your senior loved one living out their golden years. It feels a bit strange to be touring for my not-senior loved one, but I don’t have a lot of options. I don’t know how I’d got to work everyday, get Mark to all his appointments, and make sure he’s never home alone. And take care of his kids.

My tour guide is Ben. He’s a nice guy with two young kids and a sense of calm hustle. Ben meets with me and listens to our needs. Close by, don’t break the bank, transport to medical appointments, keep Mark from escaping if possible. Ben lines up appointments and tells me where to meet him.

We tour a place a mile from our home. It’s lovely. Family-owned, a resident dog, a non-institutional vibe. Mark gets rejected because of that one time he escaped. We go an grab a beer to kill time before touring the second place. I tell Ben my life story. He tells me his. He thinks my life is pretty complicated. I think his is not.

We move on to tour a second place. It felt like halfway between skilled nursing and the more community-focused model of senior living. There are birds – not as good as a resident dog. The director is tan and looks like she’s on her way to the beach. It feels generic and I don’t like it.

The third place is the one I choose. It’s 15 minutes from home. Close enough that it will be easy to visit him, and far enough that if he gets it in his head to try to escape, he won’t be able to walk home. The rooms are spacious with tall ceilings. It feels more like an apartment than a nursing home. They have a double room that is empty, so Mark will have some privacy, which has been sorely lacking in his life. There’s a mini-kitchen with no cooking elements. It’ll be a way to test if he’s ready to have more independence, but in more regulated place than the full freedom of home. He’ll be given his meds by their staff. They can transport him to appointments. If he needs to advance to a locked dementia unit they have that option. I have to furnish it, and with huge help from neighbors and friends, I get it ready within a few days.

Mark is transport by the skilled nursing facility to his new home. I have paid for two months. We’ll see what happens.

My Escape

Escape fantasies, in no particular order: laying on a hammock anywhere, driving to New Jersey and walking on the beach, driving to California and never looking back, putting myself in a personal care home.

Says Breakfast

Early morning update on “how’s Mark, where’s Mark, how are you holding up?” I didn’t even realize how much time has passed since I posted a substantive update. Maybe that’s your answer right there?! At least to Part 3 of those questions. But let’s focus on the big guy in the center of this storm. Mark continues to improve in so many important ways. While being in the middle of round two of chemo right now, he continues to not experience any majorly feared chemo symptoms. He’s not feeling particularly sick, and while he’s expressed surprise that there’s more hair in the bottom of the drain these days, he’s staying calm about it. He even gained 6 pounds in one day this week, he said! But he thinks it’s the gallons of saline and drugs ending in -cide that might have done it.

In the everyday’s-an-adventure saga swirling around Mark, and unbeknownst to him at this point, his insurance on Tuesday let us know that Wednesday would be his last cover day for his skilled nursing home. Now, as much as I’d like to throw insurance under the bus completely, part of this is that the social worker never did discharge planning with us. And being a newbie to all this, I just la-la-la’d along trusting them when they said he wasn’t leaving any time soon, and didn’t know that I should be furiously planning for Step #182 of this journey. All the way until they said, “hey! It’s tomorrow!” Ugh. Luckily, the mighty force of Mark’s sisters worked with me and yesterday we were granted a four day extension by Aetna. That buys us some time to figure out where Mark goes next.

“But Aetna said he doesn’t need skilled nursing anymore. Why can’t he just come home?” Excellent question. The tiny problem is that across the board, speech therapy to nursing to social workers to case manager, everyone at the nursing home says he will continue to need 24/7 care. That’s 24 hours a day, someone with him. All the days. Plus of course transport to doc appointments, bringing in in-home care for therapies and such. So the choice is go ahead and try to make that work, or find a personal care home for him while he continues to heal and fight his cancer.

“How are you holding up?” I really liked the maybe four days I got in the last week where there was no immediate crisis. The good old days! Yesterday, I taught my classes and also talked to, in no particular order, Aetna three times, the nursing home four times, Mark twice, neurosurgery once, as well as toured two personal care homes, and did a phone interview with someone I could hire to come into the house. I also served the boys dinner and took Matthew to fencing. And worried about how to make this rather impossible decision. I slept pretty poorly last night. I am still putting one foot in front of the other.

The guy in the center of this storm was funny on the phone last night. I asked if he had eaten breakfast. He said “of course, breakfast is the most important meal of the day.” “That’s what I hear,” I said. He replied, “Says Breakfast.”

Ever onward, D.