Tag: caregiver

Update from the Brain Cancer Chronicles: Mom’s Almost There, but Not Quite There, and I’m Not Ready for There Anyway

Update from the Brain Cancer Chronicles: Mom’s Almost There, but Not Quite There, and I’m Not Ready for There Anyway

Let me tell you what’s weird in Brain Cancer World. Two weeks ago, when mom’s hospice nurse came to visit, she declared my mom’s condition “status quo, with deterioration.” I think that means, “Still living, but a little less than she was before.” Last Thursday, 

10 Sorta Happy Things in this Summer of 2020

10 Sorta Happy Things in this Summer of 2020

You guys, my kids are climbing the walls. They’re threatening to dig a hole in the backyard and fill it with tap water from the hose and call it a pool. They’re saying it’s too hot to play outside when it’s only 78 degrees. They’re 

Rest in the Time of Coronavirus (and, um, Brain Cancer)

Rest in the Time of Coronavirus (and, um, Brain Cancer)

I was talking with my brother, Paul, sister-in-law Sarah, and David this week, when Sarah and I got to chatting about writing. She’s diligent, writing 500 words every morning at her computer before starting her work day, and it impresses me. (She also walks miles every day, does other exercising every day, cooks elaborate meals every day–meanwhile I sit on the couch to type this in the sweats I’ve been wearing for two days and I’m about to throw some shredded chicken and store-bought enchilada sauce in the oven and call it dinner. I know women aren’t supposed to compare themselves, but…you guys, these sweats are from Old Navy. They’re threadbare at this point. It’s all I’m saying).

My point is, Sarah is hustling. My life is so anti-hustle these days I can’t even rest properly. (Anyone else not able to sleep anymore? I know it’s not just me.)

During our conversation the subject of this blog came up, and Paul thanked me for finally posting something last Friday that wasn’t about the demise of our mother and likewise horribly upsetting. David, meanwhile, admitted he hasn’t even been reading my stuff because it’s been such a drag.

(Sarah, thankfully, turned to me: “You’ve got a funny line in there once in a while! It’s okay!” Guess who’s my favorite relative NOW, boys? Guess who??)

I keep writing here because I don’t want to rest on it, even when what comes out of my brain is more weep-weep and not enough woohoo. You get what you get, dear reader.

We happened to be talking in person this weekend, outside my mom’s house, standing six feet apart in a loose circle on the front lawn and driveway, because Paul and Sarah had flown in from Wisconsin to be with her. David and I took the children and Riley down to see them Saturday afternoon, in the best way we can under the weirdness of now. I know you’re giving us the coronavirus side-eye, but I told you (remember all those sad posts?): Mom is fading. Caregivers have made three 911 calls in two weeks because Mom is just too weak. This was probably the last time she’ll be able to communicate with Paul and Sarah in person. It ain’t good, people. Imagine it’s been snowing out, and we’ve dragged out the sled to our favorite hill, but now that hill is covered with a sheen of sheer ice. We know that hill is icy, but we’re already on it, and there’s nothing to do but take that scary trip all the way to bottom. Do you see what I’m saying?

(You know? I can’t imagine why they all say I’m so depressing lately.)

We hung out for about two hours, staying out of the house as a group, with one of us regulars going to sit for a mom for bits at a time. Thankfully, she took some of that time to nap, which made her caregiver happy. Saoirse remarked (while the little ones played, she hung out on the periphery of the circle, quietly listening to the adult conversation sharing more than her tween ears should probably hear) that it was really nice that we grown-ups were all actually talking. Without a TV or phones out, I suppose, she noticed a difference.

I daresay: we rested.

We waved goodbye and went back home. Sarah cooked dinner at the house for herself, Paul, and my mom, while David and I prepared our own family dinner at our home. We pulled the kids out back for a campfire and roasted s’mores. The children asked when they’d get to see Paul and Sarah again this visit, and were disappointed in the answer that those two hours that day were it. The weather Sunday was rainy and cold, so the five of us stayed indoors, together, relaxing. (I heard that Paul, Sarah, and Mom watched Wine Country.) I wasn’t glued to my phone that day, you guys. I didn’t constantly check it for texts and phone calls about Mom. Frankly, I didn’t know what to do with myself, but I knew Mom was happy, David wasn’t stressed over work, and the kids were content, so I just…sat with my family.

I rested.

(See, David and Paul? That part was kind of happy.)

I’m working on it, kids. Not quite sure when the funny will be back, but I’ll let you know how we end up once this sled hits the bottom of that hill. Thanks for coming along for the ride, happy days or no (and David did say he went back and read the last of these posts, for what it’s worth. I hear there was a funny line or two to be found in them). Meanwhile, Paul and Sarah are masked up and on their way back to Wisconsin as we speak. My phone is back to my side, charged, volume up.

At least these sweats are comfy.

Coronavirus: He’s the Only One Calling this a Vacation

Coronavirus: He’s the Only One Calling this a Vacation

So here we sit, in the middle of the apocalypse (Kidding, kidding! It’s merely a terrifying plague!), wondering if this is what Orwell had in mind when he began writing fiction–no, not Orwell! Our present crisis is too scientific for Orwell. Maybe the guy that 

10 Survival Tips for the Caregiver (So to Speak)

10 Survival Tips for the Caregiver (So to Speak)

Oh, hey, hi! How are you? It is weirdly warm and rainy here in our part of Pennsylvania today. I’m writing this in a near-empty Panera Bread (coronavirus!), after having purchased toilet paper online because we ran out at the house (children!) and all of 

Mom Gave Us a Scare, and this is the Closest I Get to Writing a Condensed Version

Mom Gave Us a Scare, and this is the Closest I Get to Writing a Condensed Version

You guys, it’s been one roller coaster of a few days concerning my mom. (As of this writing, it’s all good–or as good as it can get outside of the brain cancer thing–so please don’t worry.) I have no idea how to break the week down simply, so would you like to start with me at the beginning? Here we go.

Last Wednesday: the night of my monthly book club meeting. I’d been looking forward to seeing my friends, but that day, I was exhausted and down and didn’t want to be a drag. David gently pushed me out the door, and I’m glad he did. We talked about the Kobe tragedy and the month’s book selection and a lot of other stuff. I stayed up too late. (I worried about staying up too late.) I had two glasses of wine. (I did not worry about having two glasses of wine.) I wondered if I talked too much. (I always worry about talking too much.)

Last Thursday: I dragged myself out of bed in the morning (this is usual). Got the kids ready for school (also usual). I checked my phone around 6:55 to see a text, two missed phone calls, and a voice mail. (Not usual. I immediately regretted the previous night’s second glass of wine.) Something was wrong with Mom. She was complaining about a headache. She threw up. She couldn’t support her own weight. She was in horrible body pain. The night caregiver, N—- (I’m not sure if my mom’s caregivers want me using their names, so bear with me here) stayed past her shift to help the incoming caregiver with her. Someone told me later N—- had been in tears. She told me she was shocked by Mom’s swift decline. To hear this from one of the caregivers I respect and trust the most? Well. All the alarms were ringing now.

From Mom’s house, I made frantic phone calls to the neuro-oncology nurse, to my family, even to the hospice provider with whom I’d spoken to get information earlier that week. (“I don’t want to have to take her to the hospital,” I’d said. I was frantic, lost. “Is there any way we could sign up now and you could just give her fluids?” “That’s not exactly how we work,” the lady on the other end of the line told me. I was too overwhelmed to feel mortified right away. That came later.) Mom’s symptoms were either indicative of a) new brain swelling related to her tumor or b) any strain of flu, which has been raging through our area and family. Neither one seemed like a good alternative for our Suzie.

R——, the caregiver who’d come on to replace N—–, was crying now, too.

The doctor reluctantly prescribed steroids over the phone, though he didn’t think the tumor was the real issue (“Oh, thank God,” my mom said). I gently told Mom they wanted me to take her to the ER. “I am NOT going to the hospital!” she said. “You just had the flu, and you didn’t go. And Mary has the flu now, and she’s not going.” I told Mom, carefully, that her situation was a bit more precarious than ours, and she gave me a look–a Mom look–then sat up and chugged a full glass of water through a straw.

(We never did have to go to the ER.)

Our home care provider called me that afternoon, after R—— stayed over her shift to help us with Mom, and nervously told me that it might be time to call in hospice. (It was the first time anyone outside our family had suggested this outright.) When I hesitated to pack up my bags to go home that night around 7:30, Mom’s evening caregiver–this was M—–, a former ICU and hospice nurse–assured me that everything was fine, and to go home and see my kids and get some rest, because “there will be many nights in the near future when you won’t want to leave.”

I didn’t get a whole lot of rest that night.

Friday: More conversations with the home care provider. I picked up a bedpan, basin, and medical supplies at the store. Her morning caregiver seemed much more positive about Mom’s situation, saying that Mom was stronger. I sat on Mom’s bed for an hour and a half that morning, texting family and waiting for her to wake up so I could see how she was doing, because I had more calls to make. By noon, she was able to sit up. She was alert this day, and clear-headed. She was better. “I told you it was just a virus,” she said. “I don’t understand why you were so worried.” But when she couldn’t walk, she told me it might be time to look into a chair lift for the stairs. I had to tell her that I think she requires something else: a hospital bed, and hospice care in place. I explained that the tumor had narrowed the path of communication from her right brain to her left, and while she would have good days and bad days, she would never be much stronger than she is now, a stomach flu notwithstanding. Mom agreed to hospice. She agreed to the hospital bed on the first floor.

Her caregiver, N—– , and I got her down the stairs to give her a change of scenery and brighter daylight. At first Mom could stand up enough to move her legs a bit on her own, but that didn’t last long. Since she couldn’t hold up her own weight, N—– moved her down to her tush, and that’s how we got her down that narrow flight of stairs: N—– in front of Mom, directing her legs where to go, me behind with my hands under Mom’s arms for support and my inner thighs nudging her down, step by step. Mom said she felt like she was going to fall (she wouldn’t) and that I was pushing her (I was), but she was safe. We all knew she’d be spending the night on her lift recliner once we got down there.

At one point on our journey, as we neared the landing, the doorbell rang. “Are you KIDDING me?!” N—– said. I opened the front door a crack to accept flowers sent by Mom’s neighbor. I looked to my left, and saw what the florist would’ve witnessed had he stepped closer: my mom, her legs in her caregiver’s hands, her face flushed from exertion, the transport wheelchair standing ready on the flagstones of the foyer. We were all sweating. We were laughing before I’d closed the door, and the jokes came: what would have happened if the florist had been able to get a peek inside: would he have been shocked? Called the elderly person version of Children & Youth? Was there such a thing? It took us an hour and a half to get Mom from her bed to her living room chair that afternoon, but she did it (frankly, N—– did it. I need to start working out more).

Once Mom was settled, I stepped into her sunroom to set up the intake appointment for hospice.

Today: Since then, Mom’s been busy with a visit from my brother and sister-in-law, who’d thankfully already planned to come in this weekend and stay with her for a few days. Paul and Sarah came to watch Quinlan’s basketball game Saturday morning while Mom caught up on sleep in her recliner, and by Sunday she was able to walk up and down the stairs to shower and sleep in her own bed.

(I called the house to talk to Mom around one that Sunday. “Oh,” Paul said. “She’s upstairs in the shower.” My reaction: “What do you MEAN she’s upstairs?!”)

We celebrated Paul’s birthday and watched the Super Bowl at her house, though Mom was in bed by nine. And before her Avastin treatment Monday, we all, finally, met with hospice. There was a nurse there, and a social worker, and they asked Mom if she wanted a massage therapist to regularly visit (“No, thank you.”), or a visiting musician (“No, thank you.”), or a cosmetologist (“No, thank you.”). They asked her what funeral home she’d want to use. She told them she planned to be buried in Arlington National Cemetery, alongside her husband and mother and father–that is, if Arlington would still let her in. She’d heard they were running out of room. We assured her that thanks to Dad, she already has her spot secured. The hospice workers assured her that, until then, she is in good hands with them.

(Yes, that part was a little difficult.)

Last night, a sealed emergency kit of medicines like morphine and lorazepam was delivered to the house. Today, we expect the hospital bed to take up residence in the dining room. Yesterday, after the meeting with hospice, Paul and Sarah took Mom to her treatment, and I parted ways with them and my Aunt Mary and Uncle Tim. I came home and lay on the couch “just for a minute” and fell asleep so hard David picked up the kids and the dinner groceries I had planned to do.

It’s Tuesday now. Paul and Sarah leave this afternoon for home. I’m so grateful for the days they visit: Mom perks up when they’re there. They’ve moved furniture, paid bills, watched HGTV with her. Mom and I have talked a few times recently about where she’d like to spend her remaining months, and she insists on staying in her home, but she’s happiest when there is family around her.

When I called hospice on Friday, a different woman from the day before answered the phone. “Oh, yes,” she said. “We remember you.” I was a different person, though, too, on Friday. I was calm and professional and prepared to answer their big questions. “We were talking around the office,” she said. “We wondered how your mom was doing.”

Calling in hospice–and that hospital bed–felt like the last click in the lock. That’s not as bad as it sounds. While there’s no way at all these next several weeks will be easy (HAHAHAHA as if), I finally know that every last thing is in place to make sure Mom is cared for.

(And this will surprise no one who knows her at all, but by Sunday she was able to walk up and down the stairs again to sleep in her own bed. As her nurse told me Friday, Mom’s got fire in her.)

Last night, David grilled burgers of real meat and burgers of fake meat and roasted steak fries, and I made a salad. Our house is a disaster of clutter and laundry and neglected to-do lists at the moment, but I tried really hard not to fret about it. We shoved furniture to the side and had an impromptu picnic on the living room floor with the kids and watched The Goldbergs and told the girls not to fill up on sandwich pickles. We had dark chocolate for dessert, and we explained what hospice meant and what had happened that day. The kids nodded and knew.

Mary and Tim are going to see Mom tomorrow. I’ll be there later this week. Donna, my mother-in-law, would like to come up soon, too. We are going to do our best to fill up her days.

Mom told me Friday that she feels like she’s just sitting around waiting. “Waiting for what?” I said. She gave me a look. So we talked about things she can look forward to: visits from family, and dinners out the days she can do it, and the return of spring and the birds outside at her feeders. I said to her, “But you don’t seem unhappy, Mom,” and she looked at me sidelong again. Her hand was up at her face, and she gave a thoughtful nod of her head.

“No,” she said. “No, I suppose I’m not.”


Mom’s Decline: Definitely Not How We Wanted It to Go

Mom’s Decline: Definitely Not How We Wanted It to Go

“Well, this isn’t how I thought it was going to go.” Cian said this to me the week before last. He was lying in bed beside me, and the clock said it was about four a.m. He’d been up since the middle of the night 

Mom’s Decline: Where We Are

Mom’s Decline: Where We Are

I was on the phone with my mom the other day, laughing about my parenting skills while David was away for work. “I’m really good, Mom,” I told her, “really patient and calm, right up until about six o’clock.” She laughed, because she remembers. “But