Tag Archives: Life

I need help, but not maybe not THIS help

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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. 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.

Update and diagnosis: a new chapter

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Hi.

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.

First day of school tears (for me)

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2016-09-01 06.38.46-1

Obligatory first day photo shoot.

Ethan and Lauren started school today. Sixth and first grades. And I cried.

I don’t remember crying when they went to preschool or kindergarten, but this year was different – and super emotional. The kids are going to a new school. Each to a different school, actually. And I’m happy and I’m sad and I feel completely and utterly overwhelmingly guilty.

When Mike and I decided to have kids – actually before that – we agreed that we wanted the kids to have a Catholic education. It was so important that I converted to Catholicism before we got married so this would be a family thing.

When the kids and I moved here, Mike was fairly involved in the “finding a school” process. We continued to agree that the school should be Catholic. As I looked at areas to live, Mike was looking at schools (via the Interwebs). While he never visited the schools or talked to anyone, he had a say in where our kids would go.

And I really liked the school we chose. Then Mike died.

I’ve written about it before – just weeks into his new school, Ethan was called down to the principal’s office to get the news. His teacher, the principal, the priest, the families made us feel so welcome and so much part of the “school family” in those difficult early days and weeks and months (and beyond). Same when I was diagnosed with cancer. I truly loved love the families at the school.

But…

The school isn’t a good fit for Ethan. That’s hard to think, to write, to say because I did a lot of research to find this school.

 

  • With only a couple of exceptions, school activities are limited to sports-related things, and Ethan’s not sporty. At all. (Plus sports remind him of Mike, who coached Ethan in little league and soccer, so there’s an emotional connection that Ethan associates with sports. And not a good one since Mike was sloppy drunk the last year he coached.) New school has OPTIONS, so many options, like a robotics club, a reading club, chess, yearbook – and several less competitive intramurals like dodgeball.
  • And when I found out two of Ethan’s greatest allies/friends were leaving the school, I knew middle school would be hard for Ethan without these boys. These boys stuck up for one another, and Ethan would be miserable and bullied – with no support. I know he had other friends, girls mostly, but that only added to the bullying he was experiencing at the end of the year.
  • Ethan has asked for years to go to a different school. Having his dad’s death happen so soon into his time there AND finding out at the school have tied all those memories together. I’m not sure Ethan can separate things in his head, and that’s made for some self-imposed difficulties at the school. The new school is a fresh start. A clean start. No one knows him there, and he can create the persona he wants to be (starting with today’s outfit, which he introduced as his “new look” – much different than the athletic shorts/stained t-shirt boy I looked at all summer).
  • I won’t even go into Family Life or the repetition of explaining childhood grief to the administration and teachers… New school has an onsite counseling DEPARTMENT, and it hosts workshops and meetings for kids who’ve lost a loved one, or have anger issues, or are dealing with family status things (remarriages, parents dating, divorce, etc.)

And I feel guilty about making the decision – the best decision for him and one he’s asked for for several years – to change schools. Guilty because Ethan will attend public school for sixth through eighth grades. And that’s not what Mike and I agreed to. And Mike’s not here to support or refute my decision. And I can’t discuss it with him. And I can’t get his okay.

I CAN’T GET MIKE’S OKAY. I will never have his okay…

 

So, regarding Lauren, I decided to move her to a different school, too. I’m keeping her in a Catholic school (for now). I’ve met with the principal and her teacher to discuss the situation, and they seem more competent/compassionate/understanding. I’ve explained some of the childhood grief issues we had at the other schools, and they seem better equipped to handle it. Lauren’s a completely different kid with different needs. She’s going to be alright no matter where she goes. I feel really good about her new school, and wish I would have moved Ethan here last year (it only goes to fifth grade, unfortunately).

Cancer update: reconstruction and a bone scan

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While I was diagnosed as cancer-free in September, cancer stuff will never completely go away. One of the PAs in the Cancer Center met with me a few months ago to outline my long-term plan: mammograms and ultrasounds every six months for five years, then annually after that; appointment plans with oncologists (every three months for a year, then six months for two years, then annually), radiation docs (every six months), breast surgeon (every six months for a year, then annually), and plastic surgeon; and my final surgery.

I had my final surgery during spring break last month. This time to reconstruct the left breast to match the right one. I had to wait six months after radiation before I could have reconstruction, which meant eight months (surgery was in July, then waiting period, radiation, and another waiting period) of two completely different breasts. The new right breast was perky and sat high on my chest. The left breast showed signs of my 40+ years and the tolls of gravity. There was more than an inch difference in nipple placement, and because of areola resizing, the left was twice as big as the right.

Since June, I’ve worn a “regular” (nonsurgical) bra only a handful of times. I had to lift up the left side to try to get it to look like the right. I used breast inserts to try to get the shapes to match. It always started out okay, but within a few hours, gravity won, the inserts shifted and everything looked lopsided, lumpy and weird.

Reconstruction surgery went well. It’ll be another month or so until everything settles, but I’m pretty close to “matching.” I’ve retired the scarves and asymmetrical necklines that have helped mask the difference. And the scars are very faint already.

Unfortunately, in follow up with my oncologist over the last few months, my blood work has shown some abnormalities indicating a concern about my liver. Levels of certain liver-function/enzyme tests were elevated. Between October and February, four of the five liver tests were elevated. By April, one test was one point higher than the normal range, but a second test (ALP levels) just kept getting higher in the five times my blood has been tested since October. It wasn’t at “dangerous” levels, but my oncologist was “mildly concerned.” He ordered a bone scan, since this particular enzyme could be indicative of something wrong with the bones as well as the liver (since the other liver tests were closer to normal, concern shifted to my bones).

So I was injected with a radioactive tracer, sent away for three hours for it to collect in my bones, and returned to lay on a table for two hours while a machine took images of my skeletal system.

I could tell what part of my body was being imaged by the questions the tech asked:

Have you ever broken a bone in your arm? Yes, my wrist when I was like 11 or 12.

Have you had issues with your hips? Yes, I was born with hip dysplasia.

Which hip? Both hips.

Have you ever had spinal issues? Yes, I was diagnosed with an S curve in my spine and treated for scoliosis from elementary school through high school.

(Side note: after 18 months of all kinds of medical tests, hospital stays, and doctor visits, anything that requires minimal invasion and just laying on my back listening to music WINS. Bone scan = not bad, perhaps among my favorite tests of 2014-2016.)

The results came back a few days later – all clean, no issues. With lack of any other areas of concern, we’re now working on the assumption that I have naturally high ALP. Or I’m growing.

Otherwise, I’m feeling great. Work on my stamina continues, after a four week hiatus post-surgery. After being fairly non-active for the last 18 months, it’s a pretty big hurdle.

Focus on love and bullying: a response to “Karen”

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“Karen,” I don’t know your situation or what you know about kids and grief, but it’s a horrible, bumpy, rocky road. There are steps forward and giant leaps backward. There’s regression and repeating the standard grief steps over and over as he reaches different maturity milestones. As a parent, you just never know what will trigger a regression or how long it will last. Continue reading →