Earrings and Easter Eggs

When you are a member of a church choir, Easter is more busy than Christmas. From Palm Sunday to Easter Sunday, a church choir member has a lot of singing to do. Since I am both a church choir cantor and a member of the Grand Philharmonic Choir, with a tradition of singing a major Bach work on Good Friday evening, Easter means I am stupidly busy.

I abdicated hosting Easter Sunday dinner a few years ago, because I am usually (more of a) babbling idiot by Easter Sunday afternoon after the busy week I have just completed. Singing, especially singing at the level of the Grand Philharmonic Choir, is physically and mentally demanding and exhausting.

Since I was a child, one of my favorite things in the lead up to Easter was decorating Easter eggs. It ranked right up there with the first bite of Easter Bunny ears. I have passed my enthusiasm on to my daughter, and I had promised her we would decorate the eggs on Holy Saturday.

Having a child with OCD and Anxiety means dealing with a child with a laser-beam focus...and a need for constant reassurance. She went to bed Friday night knowing we were decorating Easter eggs on Saturday. She had been asking 30 times a day for 2 weeks when we were going to decorate the Easter eggs, and she checked the contents of the kit as many times a day...

At 3am Saturday morning, she was up and ready to decorate Easter eggs, because it was now Saturday. Yes, you read that right, 3 am. She STAYED up for the day and didn't crash until 10pm that night. We had gone to bed around midnight, and 3am is not a good time of night for me. I ended up going back to bed around 6am for a couple hours to try to beat the migraine into submission. The Kid came and woke me up at 7:30 am to inquire when we were going to do Easter eggs because the movie we had put on at 4am was over. She asked again at 9am. She asked again at 10am...We decorated the Easter eggs in the afternoon. They were lovely, at least I think they were, I was too tired to notice.

There are times when her challenges are exhausting, and when she is on a broken record about something, in absolute frustration I have said to her "don't ask again." And then I realize she can't help it. the combination of OCD and Anxiety creates a loop that she can't help. She will often answer "I can't help it." And she really can't. And then I realize it and feel like the world's worst mother. Maybe is a word we do not use in our house, because maybe means yes. It doesn't mean maybe.

Easter hasn't really been a big deal in our family tradition-wise (see Paragraph one). I was doing fine on Easter, until our music director handed me my mom's earrings, that my daughter had left at church on Good Friday. Minutes later, we started a hymn called "We Who Once Were Dead"... and I had to go and sob in the coatroom again. The combination of mom's favorite earrings and a hymn about death was my undoing.

I miss you, mom. I miss you in a million big and small ways every single day.

A Sandwich Day

My maternal grandmother was a strong, wise, no-nonsense woman. Grandma used to talk about things that are sent to our lives with the sole purpose of "vexing" a person. Yesterday was definitely a day sent to vex me.

My kid was home sick from school. She's prone to bladder infections, and we don't have any warning until she curls up in a ball and runs a temperature. She was curled up in said ball running said temperature when I called mom for our daily check-in. Since the dementia invaded our lives, I can tell from the first words how mom is, and I structure my day accordingly.

"Hi Mom."

"Well, I've done it now."

"Why, what's wrong? What's happened?"

"I've locked myself in and I can't get out."

My mom's apartment has a deadbolt, a locking door and a security chain. The chain had been sticking and she hadn't used it in over a year. Monday night mom decided to put the chain on the door again, and now it was stuck fast and she couldn't get it out of the track. More important, I couldn't get in to help her.  This was big, and my kid was home sick.

Mom was panicking, and was clearly having what we call a "fuzzy" day, which means the confusion is particularly bad.  I kept her on the phone, I told her to get the WD-40 out of the closet and try it. That didn't work. She tried pushing it in, jiggling it and then we gave up, hung up and I called my father-in-law, who is a retired locksmith, and then I called the building superintendent. Between the two of them, they were able to go to mom's, cut the chain off and get in to mom before I could herd the kid out the door and go over. I've told the superintendent that I will pay to replace the chain after mom leaves.

It was a repeat everything 5 times day.  These days are vexing in and of themselves. For example, we are planning to go out for brunch on Mother's Day, and mom was writing it down to try to jog her brain into remembering. She was quite concerned that she didn't have a present for me, and I explained to her-again-that I was the present giver this time and she was the present getter.

"So I'm not a mother then?" she said, looking quite confused. My daughter, who had been playing quietly in the corner on my Playbook, looked up instantly at that.

"You're my mom, mom, and I'm the Kid's mom. She buys me a present and I buy you a present." I explained. We've had this conversation a few times the past week, but I can normally shield it from the Kid.

It took two more rounds before mom settled down, but I could tell it had bothered the Kid. I've tried to shield her from the day to day life of dementia as much as possible. She understands that Grandma is sick, but lives in hope of Grandma getting better so they can resume their time together without me. On the good days, my mother floats the idea of watching the Kid again. We tried it when the Kid came home sick on Monday because I had a business meeting with a new client. My husband went over and had lunch with them, so mom and the Kid were only alone about an hour total, and the Kid called me partway through, a sure sign her anxiety was kicking in.

The vex wasn't done with me yet. While finishing off the lunch dishes, I turned on the cold water in the kitchen to rinse out the sink. When I tried to turn it off, the tap spun in a merry circle, doing absolutely zip-squat to turn off the water which was blasting full force into the sink. I called my father-in-law (again) to ask him how I turn it off, and when I  walked into the living room to grab my phone book to call the superintendent's cell phone (again) I turned around to find my mother on her hands and knees under the sink investigating. She then couldn't get up, so I had to wrap my arms around her under her arms and lift her up off the floor. I couldn't find the shut off valve under the sink, so the superintendent had to come and replace the taps. A day that was sent to vex me.

It's a tightrope,this dance of dementia. I have to balance my mom's need to see her only granddaughter with the increase in my daughter's anxiety if mom is having a fuzzy day.  Some times, like this week, I have no option, and the Kid has to come with, even though I know mom is having a bad day. I don't push the issue, and wait for the Kid to talk when she's ready.

There is no win in this. There is only juggling as fast as I can, balancing the needs of my mom, my daughter, my family and me, and hoping that the days that are sent to vex me are few and far between.

Tough Choices

My daughter didn't want to go to school today. There was going to be a supply teacher and my daughter's behaviour is an acquired taste, so to speak. If you don't understand the special needs, it looks like bad behaviour.

It was going to be a tough school day. Over the weekend, one of her classmates died. He was born with heart problems, and had recently had surgery to correct it, but experienced complications. He has been in the Kid's class since her first day of school. He was 6. I burst into tears when I read the notice, and the other mothers have said the same thing. The parents are devastated by the loss; our kids are taking it in stride.

My mother is scheduled for another cognitive assessment this morning. The first one was done the afternoon after she'd been sitting in the ER for 27 hours. She'd had very little sleep, was in a hospital, was disoriented, and they asked her to count backwards from 100 by 7s. I couldn't do it. I got to 93 and I was done. Mom made it back as far as 50 something, and although she didn't always have the exact interval, she did pretty well. This assessment will give a better benchmark for the level of marbles left in the bag in her brain.

The funeral is at 1030 hrs. The assessment is scheduled for 1100 hrs. I gave the Kid the option of going, and I would have rescheduled things if she wanted to go. She tought about it, and then, with the simple logic of a child, decided that she wasn't really friends with him, would rather stay at school and "she had enough sad for now with Grandma."

This morning, she didn't want to go to school. I had to make a tough choice and I sent her anyway. I suspect the teacher will have a bad anxiety-reaction day because the Kid is empathic and will pick up on the stress and sadness in the school. Normally, I would have kept her home, but with mom's cognitive assessment, she doesn't need the distraction of her granddaughter blurting out the answers, climbing the cupboard in search of cookies, interrupting to show grandma her progress on Mario Kart...so I sent the OCD-Anxiety kid to school so that I could take care of the vascular dementia parent.

Sometimes there is no good choice. I just had to make the best one I could.

And RIP little one. I hope you've found lots of angel friends in heaven. Your smile will pave the way.