Lauren, now age 16, has been in the loop about my mom’s diagnosis since we received it. I thought she understood…
A few weeks ago, when my mom was staying at our house, B and I went to a concert that we had tickets for since December. Lauren remained home with mom. I asked Lauren to watch a movie with my mom while we were gone. I told mom they would watch a movie together. Mom was looking forward to it.
The next day, we asked Lauren what movie they watched. They didn’t watch a movie. Instead, Lauren played on her phone, and mom napped on the couch before going to bed.
I stewed over that all day.
I picked up Lauren from work the night after the concert, and I said, “Why didn’t you watch a movie last night? I really wanted you and grandma to have some time together.”
“She wouldn’t say what she wanted to watch. She kept dozing off,” Lauren replied.
I turned to her in the parking lot.
“Lauren, decisions are really hard for her now. You should have just put something on. Anything. I really wanted you two to have some good memories before things get worse. You realize things are going to get bad, right?” I asked.
“What do you mean?” she asked horrified.
“She’s not going to get better,” I said.
Lauren started to cry.
“Do you know what dementia is?” I asked.
“I thought I did. But I thought she was going to get better,” she said.
Full tears from both of us at this point.
I explained the neurologist said she’s like a teenager now. She will continue to regress in age until she has no control over bodily functions or speech.
“She’s not going to forget us, isn’t she? I don’t want her to forget me,” Lauren said, full blown sobbing.
“She may not remember our names, but we will remember,” I said through tears.
“How long does she have?”
“I don’t know. Could be years, could be less, could be a little more.”
“I just want her to come to my high school graduation,” she said.
“If she can, she will be there.”
We held each other in the parking lot for a few minutes, then I drove us home.
Lauren and my mom have always been close. Mom moved in with us right after my dad died, and mom became Lauren’s caregiver while I worked. Mom moved with us to Wisconsin, and she continued that role – and while I was with my previous employer, mom was with Ethan and Lauren more than they were with me. Even after mom moved to her own condo, she picked up Lauren every day from school and helped her with homework. Mom was a constant as I went through cancer. Mom is Lauren’s godmother (LONG story). The two are the best buddies, and it’s awesome to see them cuddle up with each other or hold each other’s hands.
And when the time comes, Lauren’s grief will destroy me (much like Ethan’s grief when my dad died – oh, and the WAIL he let out during my dad’s funeral – broke my heart).
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
As I write this, I’m in full-blown tears, and snot is flowing. (EDIT: reading it again before posting caused another waterfall.
Through Mike’s death and my cancer (and now my mom’s diagnosis), the one constant that made me ugly cry was the effect on my kids.
So since September, I’ve been the only one getting mom to/from appointments, managing her banking and bills, coordinating all her errands, and keeping her out of trouble (my god, the text and phone scams! THREE times since Thanksgiving, I’ve stopped her from giving information to her “bank” via phone calls.)
But be careful what you wish for…
Mom had cataract surgery number one in April. Surgery on a Tuesday, follow up early morning on Wednesday. The follow up appointment conflicted with my teaching schedule, so I knew I couldn’t do it. My sister decided she would come out for a week.
Julie has never visited mom since my dad died. She’s SEEN my mom a few times, mostly at family funerals, but she never visited when we lived near St. Louis, and she’s never been to Wisconsin (we moved here in late 2011). FYI: she lives in Pennsylvania now and is remarried. She remains the same as she’s always been.
I let my sister and my mom have time together for the week. Julie sent several texts during that time expressing her concerns about things that have been happening for years (i.e., mom’s eating only once or twice a day) and things that have been discussed with the doctor (i.e., living independently). I was short but pleasant in my replies, but I was frustrated.
If Julie had been involved more (or at all), she’d know what “normal” was.
She went back home, and mom and I resumed our routine. When I went over the day after Julie left, mom was a bit out of sorts. Her eyes were funny, speech slurred, walk wobbly. After asking several questions, she said she took one of the THC gummies that Julie brought her, thinking it would help her sleep. I asked to see the packaging. It was a VERY high strength gummy, definitely much, much, much more than someone who doesn’t partake should take. I confiscated the drugs.
Then it was time for the second eye. Again, this was taking place during my semester, and because I took on an additional class in the spring, my time was very limited. In a pre-surgery meeting with the doc, I asked if we could move the surgery. No, schedule full until October. I asked if there was an alternative to the early Wednesday appointment. There was a possibility of an afternoon appointment, but the doc was REALLY not enthusiastic about it – it would involve him staying an hour past his usual time to leave.
Mom decided to call her brother to see if he could help.
My uncle is married to Jessica. It’s his third? Fourth? Marriage? And this woman is a piece of work. She’s also besties with Julie…
Uncle and Jessica came to support the second surgery, and left after a few days. Life was back to normal for me and mom.
Like Julie, these two really haven’t been involved. They’ve at least come up to see mom few times since we lived here, but they’re not in the know.
(I have a problem with my uncle that goes back a few years to when my grandfather died. He was executor of the will, and all four siblings and spouses (with my dad dead since 2010, mom was alone during all this with her siblings having their SOs to lean on) were involved with cleaning out the house after the funeral. More than once in those weeks, mom called me in tears. Her brother was screaming at her for this or that. Mom recommended getting an estate attorney to help make sure everything was done correctly (it was a decent size estate). He screamed about how lawyers will just take money that should be for the siblings. Super not cool.)
(I have issues with Jessica, as she’s a gossipy busy body, involved in everyone’s business, and then running to tell it to everyone. She’s human ick. She’s a shit stirrer – like my sister, she has no issues with making up stories and trying to start drama. And she thinks she knows everything. I’m not saying high school drop outs are dumb, but I’m not putting my health in their hands. Because she worked (for thirty seconds) in a medical-adjacent field – in the same role and at same employer as my teenage son’s first-ever job – she thinks she’s on the same level as physicians. When my grandfather was sick, she went into his hospital room, wiped his white board clean saying “this isn’t best practice” and started to lecture the nurses… Uncle and Jessica live in a small house, perfect for the two of them, but she moved in two of her three daughters, their current baby daddies, and all their kids. It’s a 3 bed, 2 bath, 1,800 square foot home with about a dozen people and several dogs in it. No one, not even Jessica, cooks or cleans, and the daughters don’t pay rent. She inserts herself in places she does not belong. She won’t let my uncle answer the phone alone or run an errand by himself. I just can’t understand what her motivation is in what she does. It is not with good intention.)
About a month ago, my mom had a fall when Jessica and uncle were in town. Jessica texted me to let me know that they took her to the ER. She sent this text:
Screenshot
Here’s the thing. Mom falls. Often. Mom and I were just in to see her primary care doctor the day before, and talked about the tailbone. There wasn’t any concern from the doc.
Seeing “just an fyi” made me think it was another fall. No big deal. I didn’t get worked up. I didn’t get excited. It happens. She’s broken bones before. If it was serious, I figured the hospital would have admitted her (she has GREAT insurance) or uncle and Jessica would have CALLED ME when it was happening. But I just received this text, and I didn’t react. Then Julie called and TOLD me that I had to figure out what to do when Jessica leaves because “mom can’t stay alone.”
For the last month, mom has shuffled between her house (with uncle and Jessica) and my house. I can’t sleep or stay for long at her house because she smokes in it, and with a scarred lung from cancer treatments, it’s not good for me. And then I finally asked the question: who said she can’t stay alone?
Was it a doctor? And did they mean for a few days after the ER visit or longer term? Was it Julie or Jessica that decided she can’t stay alone? And does mom have an opinion? While she’s still able, I want to allow her to make decisions for herself. So I asked mom. She didn’t remember anyone saying that, and said she’d be fine staying by herself. So we made plans for this week – uncle and Jessica were in town through Monday. Tuesday and Wednesday, mom would stay alone. Uncle and Jessica would be back on Thursday. Uncle and Jessica, upon learning that mom would NOT be coming to my house Tuesday and Wednesday, decided to stay for the full week, cancelling their original plans.
In their most recent visit (THIS visit), this was the interaction captured on our front door cam after Jessica came into my home to pick up my mom (who was already back in her house, since Jessica was supposed to be here hours earlier) and ask questions about another ER visit after vitals during her in-home physical therapy appointment were really low (uneventful ER visit, nothing to report other than a heart monitor for 48 hours to see if there was anything unusual).
Jessica’s tirade (listen with sound):
I answered her questions while making dinner. I wasn’t rude – this time. Admittedly, I’ve been RUDE to this woman, but not on this day. B and Lauren were in the room and agreed that the interaction didn’t warrant this level of response. So I responded by texting her the video:
No response, but in the days since, she will RUN out of a room when I walk in. Honestly, I want to tell Jessica that the fucking bitch in me recognizes the fucking bitch in her, and that we shouldn’t act performatively anymore. It’s in the open. We don’t like each other. But I’ll just have to settle for not interacting with her in person or by text any more (uncle is now the person who texts me updates). So, winning?
Also, WTF with uncle, in the passenger seat, saying “what now?” and doing literally nothing else.
Resurrecting this part of the interwebs to deal with the latest life challenge – caregiving.
Let’s start at the beginning, or when we realized there was an issue.
Last summer, mom “lost” two or three days. She has no idea where she was or what she was doing. She drove, that much she was aware, and she hit something as evidenced by a long scratch down the side of the GMC Acadia.
It was weird, but I didn’t think too much of it.
In September, while I was in Indiana at my alma mater, B received a call from my mom. “I’ve been discharged. Come get me,” she said.
“Joy? Where are you?” he asked.
“I called an ambulance to take me to the ER, and now they’re letting me go so I need a ride home,” mom said.
B had to leave work (late night event) after her call; he picked her up and drove her home. That’s when we became aware of the condition of her home.
I hadn’t been in her house in months. No reason to.
Dishes hadn’t been done in some time. Laundry was stacked in her room. Piles of opened and unopened mail around the living room. There was a path from the front door to the kitchen. It was bad. Jack and Lauren went over the next day to clean; I met them there.
Mom called the ambulance because of a fall. She had been falling a lot. So much that I really didn’t even react when she told me about her latest fall.
After the “lost days” incident, she gave me her keys and decided she shouldn’t drive any more. I took her to all doctors’ appointments and physical therapy. It was basically twice a week from September to the holidays.
The incident also forced the discovery of mold in her basement. The smell was overwhelming, and while there wasn’t evidence of water, there was some mold on the ceiling tiles, and it was obvious there were issues. I pulled a bookshelf away from the wall, and the carpet underneath was black. When it started and how long it had been going on, we’ll not know.
We started the mold mitigation process in December, and she stayed with us while treatments were unleashed on the house to kill any spores.
Mom also stayed with us at Thanksgiving and Christmas. Her demeanor was strange. She wasn’t herself.
These were not good visits. She didn’t leave the room (we had her staying in my office since it’s on the first floor, across from a bathroom). She didn’t really interact with us. She came out for meals, said only a few words, and that was it.
At Christmas, I lost it. I got so frustrated with her “giving up” attitude that I left. Got in the car and drove off. Then I turned around (about one block from home). I came back because I wasn’t just going to walk away. I was going to confront this.
I told her that she was giving up, that I didn’t know if it was extreme depression or what, but it wasn’t normal, and it wasn’t her.
She told me I didn’t listen well, and I was mean. Fair.
B took her home.
Mom and I didn’t talk for a few weeks. When she was leaving, she said she’d have a neighbor take her to the doctor and to run errands for her. My aunt (mom’s sister) called me a few weeks after the incident. My aunt asked what happened, and I told her. She listened and said I needed to do what was right for me and that I needed to protect my own health and family. She told mom to apologize to me and to knock it off.
Mom and I started talking again.
In January, we got the diagnosis that changed everything. Her neurologist referred her to a neuropsychologist. I took her to both of the appointments. When the neuropsych called me back to review the results of her hours long test, I knew things were bad.
He showed me the results – a couple of dot-to-dots (follow the numbers in order), draw this image over here, remember these words. The things I could see (dot-to-dot, image drawing) were disturbingly incorrect. He diagnosed her with mild dementia. Fuck.
The diagnosis was horrible to hear, but it was actually good news. I changed my approach immediately. She couldn’t help how she was acting. I couldn’t confront her anymore. I needed to be gentle, understanding, helpful. I needed to start researching.
I’ve been saying one of the saddest parts of #SaferAtHome has been that people are dying in the hospital alone. No visitors. No last face-to-face goodbyes. It really pulls on my feels. Today B had surgery – a partial nephrectomy. … Continue reading →
Thirty minutes ago, B came into my home office where I had just wrapped up a video call, and he closed the door.
He had just had a (phone) consultation with an oncologist, and he needed to update me.
“There’s a 70% – 75% chance it’s cancer,” he said. “But it hasn’t really grown since the first scan.”
___
B was diagnosed with colitis a few years ago, and a few times a year, it flares up so bad that he undergoes CT scans and other tests to make sure there’s nothing internally wrong. He had a scan in early fall, and another a month ago. Neither showed anything related to the colitis. But the second one caused his doc to refer B to an oncologist for further evaluation.
There was a spot on his kidney that was very suspicious.
The oncologist consultation was scheduled then rescheduled. Today, because of restrictions on hospitals and the cancer center, that consultation took place by phone. The doc was running two hours late for the call, but B was assured it would still happen.
The news: very much most likely cancer, but super slow growing (as if that would be reassuring). The spot WAS on the first CT scan, but no one was looking at the kidneys so they didn’t see it. If it’s grown between scans, the grown wad super minimal, but still the spot needs to be removed.
The oncologist told B this type of cancer doesn’t usually need chemo or radiation. And it can be removed while keeping the kidney intact and functioning. One night in the hospital, and then it’s about a six week recovery (basically, no heavy lifting or hits to the kidney). Bing. Bang. Boom.
But surgery can’t be scheduled until mid- to late-May — at the earliest. The oncologist has canceled surgeries like this, given the situation with COVID-19. (The oncologist originally told B it would be June or July, but B pushed back because of a major work project in July and our scheduled family vacation.)
So I guess we have to wait.
As a cancer survivor and a widow, I’m a mess. B is acting all “whatever” about it, but I want to cry. I want to scream. I want to hold him and cuddle him. I want to break down. I want to ask the doctor a million questions. I want to get B in for surgery RIGHT NOW.
But I can’t. B doesn’t want to say anything to anyone. He doesn’t want family worried. Or kids to worry.
I’m hoping he’s told me everything, but I imagine he doesn’t want me to worry. Hell, I’d hold back info to me right now, too.
Mommy's Little Blog 