This sucks

18 Sep

Even thought I’ve known for three months that my mom is dying, sometimes I see her and it hits me all over again. It’s like Groundhog’s Day for heartbreak.

This week has been one of rapid decline for my mom.

Monday was my birthday. My mom was very agitated and barely able to talk, and didn’t know what day it was. She and my dad had gotten me a birthday card and my mom’s writing was illegible so my dad had to write the message. This was the first year of my adult life my mom didn’t call me ridiculously early to sing me “Happy Birthday.” And it will be the last year of my life when she’s alive for my birthday.

That night, my brother came to my house for dinner. As he was leaving, my dad called because my mom couldn’t stand up to go to the bathroom (actually a bedside commode she’d been using because the walk to the bathroom was too exhausting). My brother helped my dad get my mom taken care of and then spent the night to be around in case my dad needed support.

Tuesday was more decline. The hospice nurse came to visit and we changed a lot of my mom’s medicines, increasing the pain pills and Aitvan (for agitation). We also added oxygen for my mom, whose pulse ox was very low. She had a tiny bowl of Rocky Road ice cream; the last thing she will ever eat. I stayed the night that night — and have every night since — to help with medicine and to be there for my parents.

It was a long night. My mom had stopped talking and making eye contact. She was up for a half hour at 2 a.m., trembling, staring off into nothing. I tried to get her to lay down, but she wouldn’t, so I just sat with her and rubbed her back.

Wednesday was another step into hell. That morning, she wouldn’t (couldn’t?) swallow her morning pills. She had her jaws clamped tightly shut. My dad and I were able to wait until she opened her mouth slightly to put her painkiller and Ativan in, and then hold a water bottle to her mouth for her to drink. But those were the last pills she took; all of the other prescriptions to combat discomfort resulting from her cancer were done. That was also the day she got catheterized since it had been 24 hours since she’d been able to get up to go to the bathroom. And we found a bedsore (thankfully only one, and it’s actually scabbed up since then).

We were told on Wednesday to give my mom all the liquid morphine she needs/wants, and the Ativan as we think appropriate. I feel like a druggie (which is so not me), crushing the Ativan and mixing it with the morphine, so I can squirt it into my mom’s mouth.

Thursday was another heartbreaking conversation with my dad, who has been struggling emotionally. He asked me why my mom isn’t eating anymore and said we should ask for a feeding tube. That it seems like torture to not be feeding her. I told him it would prolong her life and he looked so broken as he replied that yes, we should.

The sleepless nights and stress are starting to get to everyone. My brother has been super irritable and today he screamed “shut the fuck up” at my dad as they argued about something completely ridiculous and inconsequential (literally, it was about whether a burrito is a snack or a meal). I then told my brother he was out of line and that he should leave it he can’t be decent, and then I became the target of my brother’s anger.

Let’s play a game called “Why does Music have a headache.” The options are my parents’ un-airconditioned house, where it regularly gets up to 85 degrees inside; stress from my mom’s situation; stress from work; lack of sleep; general existential dread; other; or all of the above.

I went home for a few hours this afternoon. Turned off my work computer, drove home, took a cold shower, and passed out for a nap. Woke up from the nap and Mike informed me that Ruth Bader Ginsburg died. I admired the Notorious RBG very much, but all I could think was, “If a white lady had to die while I was sleeping, I’m so, so thankful it wasn’t my mom.”

Now I’m back at my parents’ house. I’m sitting on the bed next to my mom, who is snoring. I keep wishing I could just wake her up and tell her about my day and talk about how well Rafa is doing at the Italian Open and fill her in on Michaela’s homeschooling.

She was been a tiny bit lucid today. Not enough to have a full conversation. But she smiled at Michaela when she came to visit this morning. And she opened her eyes and looked at me when I told her I love her. And when she’s having pain and is moaning and thrashing around, she’s nodded when I tell her I’m going to give her medicine, and she’s able to swallow the liquid I squirt into her mouth.

The hospice nurse who came to visit today said they talk about “how much longer” in terms of hours, days, and weeks. My mom has days, she said. But not many. And so we wait.

Week 26

13 Sep

Last week was pretty uneventful, which was a blessing.

Michaela continued her school work. She and Mike are finding their groove. It was funny, because she complained about having three 45-minute Zoom sessions on Thursday. Now, that’s a lot for her because Zoom sessions aren’t a big part of Watson Homeschool Academy, but I reminded her that if she’d stayed at her normal school, she’d be doing that every day.

Mike had several shoots last week and booked a big gig at the end of next month to do a shoot in North Carolina. It’s interesting to see how his business continues to change in a COVID world. Events aren’t coming back any time soon, so people are having to come up with other things. Sure, there are lots of recorded Zooms, but some folks are being smart enough to create well-done, strategic videos.

I continue to try to juggle work and helping with my mom. Last week was stressful. We changed a bunch of my mom’s meds on Tuesday, then Wednesday was really bad. Thursday we added back the medicines we took away and added a strong opioid pain killer. My mom’s in pain and becoming more overwhelmed cognitively. On Tuesday, I asked the hospice nurse how much longer she thought my mom has; she said two weeks. (Which, if that’s true, will be three months since my mom was given the terminal diagnosis and given three months to live.)

Tomorrow is my birthday, and I’ve been super emotional about it in the last week or so. First, I wasn’t sure if she was going to make it to my birthday. Then I realized she would, but it’s very strange to know this is the last birthday of mine she’ll be alive for. I would prefer to skip my birthday this year and just plow forward; I don’t feel much like celebrating. But Michaela, being the 10-year-old that is is, doesn’t understand that, so I’ve been preparing to paste a smile on my face and hide my tears.

I have to say, though, I do have a lot to be happy about. I have a job, a family that loves me, health insurance, etc. And I have the best friends. One friend sent gourmet chai tea latte concentrate, my favorite, and a beautiful chai mug. Another friend surprised my today by coming to my house and bringing the most delicious homemade chai-spiced cupcakes with chai-spiced buttercream. Another friend had hundreds of dollars’ worth of Olive Garden delivered to my house for dinner tonight. Someone else brought me a basket full of happy, relaxing treats (a coloring book, novel, lotions). And even outside of my birthday, I’ve had so many people check in regularly, offer to bring meals, listen to me vent, etc.

Oh, and Mike and Michaela got me what Mike described as a “social justice warrior t-shirt collection” for my birthday. So next time you see me, I may be sporting a “Make racism wrong again” or “Black lives matter” shirt. #Resist!

Week 25

6 Sep

Holy crap, another week of COVID weirdness. Another month! Will it ever end?

(I’m sure it will, sometime. But not anytime soon.)

Last week, we celebrated my dad’s 73rd birthday. As with my brother’s birthday in July, it was weird (for me, at least) to know it was the last one we’d celebrate with my mom. We celebrated with cards and cake and family dinner.

Mike had a number of shoots last week, so Michaela got to be relatively independent with her learning again. She’s doing pretty well as far as I can tell. It was the first week of her elective classes, which are currently being done via Zoom. She had three or four Zoom sessions with the elective teachers on Tuesday and Thursday, which seemed to add some nice variety to her school week. The Zooms are only every-other-week, and only through September at this point, so it’s not a huge undertaking by any means.

For me, it was a pretty standard week. Lots of work on COVID and wildfire preparedness. Which was timely, since a large fire broke out yesterday that has burned a couple of thousand acres at this point and isn’t contained.

I also fit in a trip to the dentist. My first time since taking my mom. My teeth looked good, but it was surreal to be there. When I took my mom, we rushed out of there and I didn’t pay. I called later that day and they told me not to worry about it, that we’d take care of it when I went in for my appointment. And when I went in, they told me there was a credit on the account and that I didn’t owe anything. The kindness the folks at Stephens Dental have shown is overwhelming. They are just the best people. I was honored to be able to make a donation to Heifer International in their name, to thank them for all they’ve done for my mom over the years.

In other mom news, my mom is here at my house. Maybe for the weekend or maybe forever. I’m not sure.

My dad called yesterday and said my mom wasn’t feeling well. Not pain specifically, just an overall bad feeling. I’d spent the day being super lazy (it’s been 100+ degrees out all weekend, so I am committed to staying inside, in the a/c, and being cool), so I said I’d pop over to their house to check in.

When I got there, it was really, really hot — their thermostat said it was 90 degrees inside — and my mom couldn’t get comfortable. I put some cold clothes on her chest and head, set up a second fan to blow on her, and while that helped a little, it wasn’t enough. I offered to take her to my house, where we have air conditioning and I knew it was a much more reasonable temperature, and my mom surprised me by saying yes. My dad put her in the wheelchair while I grabbed the walker, the box of medicine from hospice, and my mom’s pill case. We got my mom in the car and had an uneventful drive to my house.

Once home, Mike helped me get my mom in the wheelchair and we got her inside. Mike had to take apart our guest bed, which is upstairs, and move it into one of the downstairs bedrooms. My mom is too weak and unsteady to go up our stairs, and the bathroom downstairs has a large walk-in shower. The whole time, my mom was pretty out of it, and she collapsed into sleep once the bed was set up.

Mike had borrowed a baby monitor from our friends, so I was able to keep an eye on my mom throughout the night. She was up and incredibly restless about about 9:30 p.m., 1 a.m., 4 a.m., and 6:30 a.m. I got up several times to help her get to the bathroom. (Yet another way this whole situation is like having a baby again.)

It’s now 1 p.m. and my mom’s been sleeping pretty much all day. Just talked to my dad, who agrees I should keep her here the rest of today and tonight at least, until we see what the weather is like. Assuming everything else remains the same, when the temperatures go back down to the normal range, I’ll take my mom back to her house. If something changes, we’ll have the hospital bed brought here and we’ll roll with it.

Week 24

30 Aug

Last week was Michaela’s first full week of homeschool. It seemed to go pretty well, although I know Mike was super stressed. It’s hard to juggle running a business and being a teacher and taking care of most things around the house!

I spent Monday at my parents’ house so my dad could do some errands (my mom isn’t supposed to be home by herself anymore) and so I could be there for the weekly visit from the hospice nurse. That same day, Mike had a shoot from 9 a.m. to 2 p.m. We’re very fortunate that Michaela is a level-headed, independent kid. Mike set her up with the day’s school work and we both took off. Michaela got through what she could, which was most of it, with a little help from the best tutor nana around: Mike’s mom Laura.

Michaela’s relationship with Laura is really beautiful. They video chat nearly every day. And of course it’s not the same as getting to see each other, but it’s definitely helped give Michaela a feeling of connection and something to look forward to. It’s not clear when we’ll be able to get together again in person, but in the meantime, it’s nice to see Nana (and Papa!) each day.

I had a book club meeting this week and it was just what I needed! Last month, we read “The Song of Achilles,” which I loved, and it was interesting to hear everyone’s perspective on the book. Of course we also talked a lot about the new school year; everyone in the group is a mom. Of the seven of us who were there that night, three had pulled their kids from the district and put them in charters. One has formed a pod. And the others are going to try to muddle through with the neighborhood school. I’ll be curious when we meet next month to see how everyone’s school year is going.

My book club is made up of a great group of ladies. Not only are they well-read, they’re really nice. Whenever we get together (lately, in someone’s back yard, all 6-feet apart, with bring-your-own food and drink), I leave feeling happy and somehow lighter.

That came in handy the following day, when I went to my mom’s house to relieve my dad and my mom needed help with showering. We’d talked on Monday about getting an aide to help with that and my mom declined. On Thursday, though, she asked if I’d help. Getting in and out of the tub is hard for her because she’s so unsteady on her feet, and showering and washing her hair is exhausting. I was happy to help and it wasn’t as weird as I thought it would be (mostly because I didn’t have to actually wash her body, just her hair).

People talk a lot about how taking care of an aging parent can be like taking care of a baby. I was reminded that Mike did most of the caring for Michaela when she was a baby! Ha ha. I was also reminded that my mom did all the care-taking when I was a baby, and it is an honor and a gift to repay her now.

Week 23

24 Aug

Michaela started 5th grade last week (during week 23)! The first two days were mostly just practicing using Schoology, plus a couple of small assignments. We’ve really begun school in earnest this week. Last night, Mike and Michaela sat on our back deck and worked on math as the sun was going down, and it was beautiful.

Mike started installing interior doors in our house! We ordered them ages ago and they were delivered just before the lockdown started. Just under two dozen doors have been sitting in our garage for five months, so needless to say, I was thrilled when he started putting doors in on Saturday. Frankly, I think it’s amazing he’s able to do stuff like that. And now I have a door on my office!

Work is work. We’re getting closer to schools being allowed to reopen, and it’s going to be very interesting. I don’t think people are paying attention to the fact that schools may have to close again (if 5% of a class — basically one student or teacher — test positive, the class has to quarantine for 14 days; if 5% of a school tests positive, the school has to close; if 25% of a district tests positive, the district has to close). So everyone who is shouting for schools to open so parents can have stable child care… those people are not paying enough attention to the details.

Stuff with my mom is the same. She was having weird abdominal issues over the weekend that resulted in my spending a lot of time at my parents’ house. The hospice nurse came today and tweaked my mom’s medicine again, so hopefully she will have some relief.

Just another week in COVID times…

I Talked to Jerry

21 Aug

My mom’s sister, Jerry, died 20 years ago of breast cancer.

Jerry, who was 10 years older than my mom, was like a mother to her. My grandmother was a single mom who worked full-time, and moved the family around a lot within San Diego County and Los Angeles. When Jerry became an adult and moved out on her own, my mom would spend summers at Jerry’s, relishing the freedom, ease, and comfort of their time together.

Jerry was my mom’s best friend. She took my mom to see The Beatles in 1965, which my mom says is the best concert she’s ever been to, even though she couldn’t hear the music over the crowd screaming. She and my mom did stuff together all the time, and even after my brother and I were born, Jerry was a big part of our lives.

When Jerry died, something in my mom broke. She retired early and began being much more solitary. We all miss Jerry very much.

I was at my mom’s house yesterday when she told me, “I talked to Jerry.” She was dead serious and started to cry as she explained it to me. She said Jerry was there, sitting next to set in the same way I was. That Jerry looked the same as before she got sick; she hadn’t aged. That Jerry said she’d be seeing her soon. That it was weird but nice, and that it’s happened twice.

My mom is an atheist. She is not someone who finds comfort in religion, or someone who ever thought there was anything after death. But she was emphatic that she talked to Jerry.

Week 22

16 Aug

This week was rough.

Thursday was the disastrous dentist visit. Friday we gathered for family dinner for my dad’s famous tacos. The tacos were delicious and we actually had a nice time together, but my mom was wiped out; she quietly ate one and then went to lay down, then was in intense pain an hour or so later and I had to give her morphine. Saturday brought more intense pain for my mom and another trip to my parents’ house for me, to give my mom morphine again.

I had a hospital bed delivered on Saturday because my mom was having a lot of trouble getting in and out of bed, and sitting up. Of course, it’s not her favorite thing because it’s a reminder of how sick she is. So she slept in it for a bit and then returned to her regular bed. Frankly, that doesn’t bother me at all; that stubbornness is a hallmark of my mom’s personality.

Michaela spent the week at Y camp, which she did not like. She said the counselors spent a lot of time on their phones and didn’t seem to care about the campers. Every day, I picked her up and heard a litany of complaints. It was kind of a bummer.

Mike had a really big shoot that kept him super busy, but it went off really well. His client was happy and I think while it was incredibly stressful, he enjoyed the chance to tackle such a complex project. I’m so proud of him. He works really hard, hustles like crazy, and does great work. The pandemic upended his business and he’s figured out not only how to keep going, but to thrive.

Besides chauffeuring Michaela to her day camp and helping out with my mom, I spent the week immersed in public health bureaucracy hell. I keep joking that I should have gotten a degree in epidemiology. My BA in Spanish and Government and MA in Latin American Studies are NOT cutting it in this COVID world. Still, as we mark five months since schools closed campuses to prevent the spread of the disease, I can’t help but think even more my stressful work days now are waaaaaaaay better than they were in March. So at least there’s that!

Dentist

13 Aug

Today was a shitty, overwhelming day. There’s no other way to put it.

My mom and I have a long history together when it comes to the dentist. The short version is, for the last several years, I’ve made dental appointments for my mom, taken her to and from them, and paid for them.

About six weeks ago, my mom said she had some tooth pain and I made her appointment to have it addressed. When she got her terminal diagnosis, she had me cancel the appointment. I call her twice a day these days and when I spoke with her yesterday morning, she said the tooth was really bothering her.

I happened to have a dentist appointment today and I was able (after a stressful process that involves my mom’s declining mental facilities and a conflict-not-conflict with a visit from my mom’s hospice nurse) to switch it. The dentist gave my mom my appointment and I’ll go another time.

So this morning, I got to my mom’s house to pick her up. She was dressed and looked pretty good, but something felt a little off. She said she wanted to use her walker. So I helped her to the car — slowly, so, so slowly — put her in, folded up the walker, put it in, and we were off.

My mom is practically agoraphobic and didn’t like the leave the house even before all this. She gets extremely nervous riding in cars. And she was agitated because she couldn’t find her sunglasses and had to wear a pair Michaela left at her house. Fortunately, her hospice comfort kid (magic box of medicines for a variety of conditions) includes Ativan, so I gave her one of those.

I should have taken one, too.

When we got to the dentist, my mom had a really hard time with the walker. I hadn’t realized this was the first time she’s left the house in any way in six weeks. It’s the first time she’s spent any real amount of time out of her bed in weeks. She was so weak! She was stumbling and her hand-eye coordination was poor. She made it from the car to the building, into the elevator, and to the appointment. Then from the dentist office lobby to the dental chair. The whole time, she wasn’t really talking, and when she did say something it was a barely audible mumble. She refused to take her glasses off.

I know my mom is dying, but it really hit me, there in the office. She was so diminished. And, after years of our mother-daughter dentist routine, this is the last time I’m going to take her to the dentist. It’s probably the last time I’ll take her anywhere.

The problem with the tooth is something that would normally call for a root canal to fix. Not a great option for someone who doesn’t have much time left. So the dentist, who I love and who has been our dentist for probably 25 years, did what he could to make my mom more comfortable.

The walk out of the dentist was even worse. My mom’s energy was totally depleted. It felt like she was giving it everything she could, just to make it back to the car. When we got there, she couldn’t fasten her seat belt. I had to do it for her.

I asked her if she wanted to take the scenic route home and she said yes, so we drove through a part of town where we used to live. I stopped in front of our old house — the house we lived in for my whole childhood, the house she and my father rented for decades — and she said, “was that our house?”

I drove the rest of the way home with tears streaming down my face, thankful for sunglasses and that she was so out of it.

When we got to her house, my dad was there and he helped my mom into the house. She went immediately to bed and was asleep in the time it took me to fill my dad in on what had happened.

This is so hard.

Week 21

9 Aug

It’s been five weeks since my mom’s terminal diagnosis. Four weeks since she got her three-month prognosis. She’s still chugging along.

We started a weekly family dinner tradition, which has been mostly nice. After the first week, when I told my dad we’d be over for dinner the following week, he said, “AGAIN?!?!” (As you can tell, he’s not really into family time.) Friday was our fourth week and after, when I told Mike I’d enjoyed it, he said he wished we’d started earlier. I reminded him about my dad’s comment, and we laughed. Just goes to show how set in our ways we are, until something happens that forces us to change.

I have been spending lots of time at my parent’s house. This week, I was over on Tuesday, Thursday, Friday, Saturday, and today. I’m thankful they are only seven miles away, but it adds up.

Michaela did a half-day jump rope camp this week. She’s not super sporty, but she enjoys jump roping and has learned all sorts of different tricks. It’s nice for her to be out of the house and doing something with other kids. Friday, my dad picked her up (both Mike and I were working and couldn’t) which was a really nice thing for him to do. In these times of COVID, you can’t just get a friend to do it!

Next week, Michaela’s doing a full-day camp through the YMCA. I haven’t pointed it out yet, but that’s her last full week of summer. Her new school starts Aug. 20. I’m really looking forward to seeing how homeschooling goes. I have high hopes that she will learn a lot, but also create some great memories with her dad as her teacher.

Sparkles and Nibbles, our new guinea pigs, are adorable and sweet. I bought them so Michaela would have something to love while processing her feelings about my mom, but as it turns out, I really needed them, too. I get a ridiculous amount of joy walking into Michaela’s room (where their cage is) and talking to them and feeding them lettuce and filling up their hay or their water bottle.

Another thing that’s bringing me joy lately is reading. I devoured “The Song of Achilles” and limped through “The Seven or Eight Deaths of Stella Fortuna.” I am a compulsive adder of books to my Amazon to-read list, and I have a goal of getting my library subscription set up again so I can do ebooks from the library…. once I finished reading the other books I have downloaded on my Kindle. A year or so ago, Amazon was doing a special on books about women from all over the world. The books were free, they were all in translation, and I downloaded maybe a dozen. So I’ve been working my way through those, reading tales from across the globe. I have a few more as well as Michelle Obama’s “Becoming,” which I have been putting off reading for reasons I can’t articulate.

The other book that’s been on my side table lately is “Bridge to Terabithia.” I’m reading it aloud to Michaela. We are approaching the sad part and soon enough I’ll be trying to stifle my tears as I read. Just like Mike did when he read her “Where the Red Fern Grows.”

What classic books do you enjoy reading aloud to your kiddos? I’m always looking for recommendations!

Week 20

2 Aug

…And then it was August. How did that happen? How has it been four months since the world stopped (and then reopened in a weird purgatory, with all signs pointing to the right thing to do being to close down again)?

We officially took Michaela out of her neighborhood school and enrolled her in a charter that will support homeschooling her. Mike will be the headmaster and lead teacher at Watson Homeschool Academy, as we’ve been calling it. I will be in charge of being cute and working my day job.

Michaela seems to be fine with the change. I think it helped that all schools in our county will be opening with distance learning. So it’s not like all her friends will be together and she’ll be stuck at home. With Mike’s support, she did well during “crisis schooling” from March through June, so I expect this year will go well. It will be interesting to see what happens with Mike’s work, though; if he starts having more full-day or out-of-town shoots (as he usually does), that will mean a lot more independent learning for Michaela, or help from me.

Not sure how help from me will go, as I’m still (obviously) very involved with my mom’s care. I am happy she finally qualified for hospice but so far, am finding that I have to be very hands-on.

My dad is doing his best, but it’s a lot to keep track of (as an example– in the last week, my mom went from one pill three times a day to two pills three times a day to two pills three times a day and one pill twice a day). He isn’t including to ask a lot of questions, and he and my mom don’t communicate very well, so I feel a keen responsibility to stay on top of everything.

My mom gets a visit from a nurse once a week. The nurse takes her vitals, talks to her about any pain or discomfort or issues, checks her medicines, etc. We (I) get a call in the morning from the nurse saying she’ll be there within a certain window (which has been as short as “I’ll be there in 30 minutes” or, at 9:30, “I’ll be there between 1 and 2:30”). So far, the visits haven’t been on a designated day; they’ve been different days of the week each week. I like to be there for those appointments, so it generally means dropping whatever I was doing and heading over there. I’m happy to do it, but it’s definitely stressful.

On another note: is anyone else afraid of having COVID every time you some some random thing happen? I sneezed after visiting my parents and had a sleepless night wondering if I have COVID, even though I know my parent’s cat makes me sneeze. I had a scratchy throat when I woke up one morning and was convinced I have COVID. Etcetera.

Just me?