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?
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.
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.
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.
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.
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.
I’d be a better stepmom if I knew what all these things mean: offsides, safety, blitz, in the pocket, infield, running back…or which sports they apply to. But here’s Matthew, being an excellent fan and athlete. He knows what it all means.
Today I met Mark — he arrived via transport provided by the skilled nursing facility — at the hospital for his outpatient medical oncology appointment to prep for round two of chemo next week. (Did you know that you have to add a descriptive word in front of the word “oncologist?” Me either. Mark has to see a radiation oncologist, medical oncologist, and dental oncologist).
We also met with neurosurgeon who rounded on Mark when he was inpatient. I asked a lot of questions. The more I learn, the more questions I have. I learned a few more things today. So on the one month anniversary of his surgery, I thought I’d give a brief recap and include more details now that I’m more knowledgeable. Keep in mind that that’s not very knowledgeable, relative to what I now deeply understand about the massive complexity of the human body.
Mark’s tumor started in his sinus, so it’s considered a sinus cancer. From there it marched through his skull and into his brain cavity. I say brain cavity rather than brain because it didn’t make little roadways into his brain, it just grew in the space normally reserved in our skull for only BRAIN. So imagine something wedged into your head like, say, a baseball, where there was no room for a baseball per se.
When did it start? We don’t know. It’s an aggressive cancer so it’s hard to say. I spend an unnecessary amount of time trying to recall the signs of this coming. We’ll never know when it began.
I learned many more details about the surgery, and you can ask me if you’re into learning about brain surgery. As a science teacher and a generally curious person, I am. And learn I did. Let’s just say that Mark will probably need to carry a card that says “body contains metal.” Which is kinda cool, if you think about it in a space odyssey kind-of-way. If you think about as someone who mostly likes life to make predictable sense, it’s a bit more challenging. And yes, I went home and watched a YouTube video of a bilateral craniotomy. I suggest caution if you choose to do this.
The tumor, in addition to exploring his eye orbitals and sinuses, pressed into his prefrontal cortex and eventually caused swelling of his brain. The prefrontal cortex does a few important jobs for us, and when it gets fussed with it can lead to some problems. These include impaired judgement, memory loss, reduced motor skills and spatial reasoning (see our van as evidence), inability to understand/interpret social cues, impaired language skills, loss of empathetic reasoning, reduced impulse control.
Given all that, one month into the repair effort on this problem, Mark is doing remarkably well. He’s quite agile, but not yet consistently so. He’s regaining memory, but not yet consistently so. He’s apt to suddenly make decisions, some good (used a wheelchair at the hospital today! Yay!) and some not (suddenly standing up to get out of the wheelchair and stumbling before nearby hands catch him). He’s good with some numbers (Yay! I now know how to check messages on the house phone!), and not with others (being at the hospital from 1:15 – 3:15 pm is two hours. I’m pretty sure. I’m tired, but I’m pretty confident on that one). The docs say, and I understand and agree with them, that we just have to wait and see. Mark has to do the work — OT, PT, speech, chemo, radiation — but we have to wait and see.
So today I waited. 4 hours at the hospital today = 4 hours getting to talk with Mark, hold his hand, rest my head on his shoulder. We found things to laugh about. He teased me and I teased him back. He drank a diet ginger ale even though he’s skinny as a rail. I got him to eat some peanut butter and crackers. He wheeled himself along stubbornly until he got tired of running into walls, and then I stepped in and straightened his path. I’m reminded of this Bible verse: two are better than one… if either of them falls down, one can help the other up. And so, together we keep going.
Ever onward, D.
Note to the masses: if you visit Mark, do not leave with him. He will likely tell you that he can, but that is not true. This note is necessary for one good reason: Mark escaped. He’s been hankering to get out, as you can imagine, and even tried using the magic acronym “AMA” to set him free, but the social worker has been helping me keep him put. He’s still recovering from a very significant surgery, and he still has a lot going on medically other than that. He isn’t making a lot of sense these days. He told me about a wonderful lunch he had in the dining hall with a new resident. “I told her about the library and the swimming pools and picnics we have here!” he enthusiastically recalled.
Mark gets daily speech, PT and OT. His next round of chemo is Sept 11, 12, and 13. One major struggle is that while the facility will transport him, he can’t navigate the hospital alone. He can’t find his way to a doctor’s office or recall why he’s there. I’m back to school, and I am balancing working with arranging for someone to be with Mark at every appointment. And there are a lot of appointments. In addition to chemo, in the “neuro” alone prefix, he’s got neurosurgery, neurology, and neuropsychology appointments. He has opthalmology and ENT to follow up with. He needs to meet with the radiation oncologist. They told me he should really check in with his PCP, too. He’s getting a little sick of all of it.
We knew Mark was a flight risk. That’s why he was given an ankle monitor when he arrived at skilled nursing. The ankle monitor is designed to set off an alarm if Mark passes the threshold of the front door.
All went fine, until the woman who’s ALWAYS at the front desk in on the daylight shift went on vacation. Mark looks more like a regular visitor than a typical resident there. He’s tall enough that you can’t easily see his surgical scar on the top of his head. The average age in skilled nursing appears to be about 80, so at 56 he doesn’t remotely fit the profile of a skilled living resident. He wears regular street clothes, and he isn’t using an ambulatory assistance device, relying on the walls when he needs to steady himself. So one day when Mark followed a group of visitors out the front door after figuring out how to remove his ankle monitor, the woman at the front desk didn’t even look up.
I was at work when I got a call from his friend, who had gone to visit Mark that day. “Um, I’ve got Mark at the house. Should I stay with him?” “YOU WHAT?” I yelled into the phone. The friend sounded nervous, “I found him at the end of the parking lot when I showed up to visit, and he said he was waiting for a ride home. I brought him home.” “HE HAD BRAIN SURGERY! HE CAN’T COME HOME!” I said, adding a few choice curse words. “TAKE HIM BACK!” “Um, okay,” I could practically hear the sweat begin to cover his brow. “Okay, let me try to get him back in the car.” I hung up and called the facility. “MY HUSBAND ESCAPED. SOMEONE LET HIM OUT!” I yelled at the front desk lady. She put me through to the supervisor, who anxiously told me the friend should bring Mark back. Um, yeah. I gave him the friend’s phone number and he said he’d call as soon as they got back. I waited. And waited. Thirty minutes later, the call came that he had been returned, safe and sound.
I had installed a Nest security camera on the house, and I looked at the footage later. I watched Mark’s awkward gate as he approached the front door, the black surgical stitches still arcing across his skull. I watched as two minutes later he left the house and got back into the car with his friend.
I drove the facility to meet with the supervisor. I learned that skilled nursing really doesn’t want to lose your loved one, because they have to report these things to the state. It creates a lot of paperwork and dings their permanent record. Which I was glad to hear. I also learned that they can’t restrain or drug your loved one to keep them in. It creates more of a prison-like situation. Not allowed. The ankle monitor Mark had was the most secure device that was permitted. Short of the dementia unit, they couldn’t lock Mark in.
I toured the dementia unit with the supervisor. If you’ve never toured a dementia unit, you might be — as I was — picturing grandma and grandpa saying silly things and shuffling around. What it looked like was a dismal locked ward with a swarm of wheelchairs loitering around the nurse’s station, some people yelling, many sleeping, and others looking confused or agitated. The smell was strong. The atmosphere was of impending doom. This would not work.
To try harder to keep Mark in, the supervisor put up a “Wanted” style poster at the front desk. A black and white mug shot of Mark looking ancient and exhausted was taped a magic marker headline stating “ELOPEMENT RISK.” The posted a 24/7 sitter in his room.
Later, I asked Mark if he remembered escaping. “Oh yes,” he said calmly. “Why did you do that?” I asked. “I wanted to go home and have a beer,” he said.
That seemed pretty logical to me.