The wisdom of Solomon

"Do you think I'd be better in a home?" my mom asked yesterday. Now there's a double-edged sword of a question if ever there was one. If I answer honestly, I will not only hurt mom's feelings, I will set myself for "you just want to put me in a home" comments on the bad days. If I answer "no". I'm lying to my mom, something I've been taught never to do.

Mom's nutrition would certainly be better in a long term care home. She has a bite of breakfast, whatever I make her for lunch, and lives on Ensure or Boost the rest of the time. I've left sandwiches for her and thrown them out days later. I've put the sandwiches ON the bottles of Boost in the fridge, so mom had to move them and she still chose the Ensure over the sandwich. She goes through a bunch of this stuff in a week. She likes it, and it's keeping her alive. If her meals were provided, she would eat more real food.

Mom would sit in her room. But then, she currently sits in her apartment, so it wouldn't be much different. My mom has never felt the need for a large circle of friends. She's shy and private and would decide that people aren't friendly, oblivious to the fact that if she'd smile and say hello, people might say hello back...

Mom would have to share a room. That is the economic reality of our situation. We don't have enough money for a private room and there is no house to sell to provide the income. Sharing a room is one of the reasons mom doesn't want to go to a home.

For me, there is no easy answer to that question. I'm dreading the summer, when my daughter is out of school. We're trying to find summer camps for her, but it won't cover all the weeks. It's not fun at grandma's anymore, and the Kid doesn't want to go. I'll have to think up some alternatives for the days when she will have to come with me. I can't find a WIFI signal, so Netflix on my laptop isn't an option. I may have to make do with the portable DVD player.

If mom were in a home, I could skip a day occasionally without panicking that she hasn't eaten. We might be able to plan an overnight holiday. I could get my work done without one eye on the clock.  But I couldn't just go in and make our cup of tea, and it wouldn't be home anymore.

Mom went wandering the other day. At least, when we got to mom's apartment with the flowers for her balconey pots, she wasn't in the it. Now granted, she only went down to get the mail, but what if she decides that she's going to go back to church instead? She wouldn't have her walker-she only uses Myrtle under protest-and what if she got partway there and couldn't remember how to get back? I do have spies in the building, but that would tip the balance for me into time to move zone.

I answered mom honestly. I told her that in some ways, she would be better in a long term care home, but I also knew it was her worst nightmare. I've only toured one so far, but it was bright and cheerful and the people were well taken care of and happy. I know I need to get the list in so that we can get on the waiting lists, but I'm stalling. I keep telling myself that I'm waiting until after the biopsy to decide, but I'm just postponing the inevitable and hoping that God will grant mom's prayer and take her to heaven before she has to leave her apartment. There is no win in this.

And sometimes I drop the ball

My day yesterday started with a phone call from my mom's family doctor, who left a slightly annoyed message that we had missed mom's biopsy appointment last week. I needed to straighten things out immediately.

According to my calendar-AKA the Bible-the biopsy appointment was scheduled for tomorrow, because on the day we supposedly missed the biopsy at one hospital, we were at the other hospital finding out how many marbles mom has left in the mental bag with a follow up with the geriatric doctor. I remember discussing the conflicting appointment with the surgeon's secretary, and I had May 17 written in my calendar, which was then also written on the calendar at home, in my office, at mom's...but the piece of paper about the appointment had May 10 written on it, when we were at the other hospital seeing a different doctor about a different medical issue. After a bunch of phone calls and juggling, the biopsy has been re-booked for May 24.

I am the scheduler in our family. I have 2 extra large calendars in our house, plus a small one in my purse. I keep track on the family obligations, my work deadlines, meetings, and now, my mom's life as well. I'm scrupulously careful about appointments...but somehow this one went off the rails.

Mom's skin cancers are spreading by leaps and bounds. She has a covering on them all the time now, because they ooze and bleed without a dressing. She's forgetting WHY the bandages are there, and keeps asking when it will get better so she can have the bandages gone. She pulled the bandages off yesterday to see, and then didn't like what she saw. We need the biopsy to decide on next steps. We have limited options-do nothing and wait for it to eat her head or go septic and kill her slowly, have more radiation, which may very well have tipped the scales into full blown dementiaville in the first place, or have surgery, which will require a general anaesthetic which she may or may not survive, a skin graft which may or may not take because of the radiated area, and a possiblity that it will just grow back again if there are cancer cells left. There is no good option.

I dropped a ball today. I need to shake it off, let it go and move on. Sometimes that's easier said than done.

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.

In honour of Children's mental health week

a day in the life of a kid with OCD.