"Surmising and supposing"

My mom has lived in the same apartment building for over 20 years. She keeps to herself but has a friendly, nodding acquaintance with many of the people in her building. She's had the same landlady and Nedica has become a good friend to mom over the years. Nedica speaks her mind and speaks the truth. We get along famously.

Gary has been bringing mom's paper to her door for a few years. He goes out every morning early, and makes a special trip to mom's door so she doesn't have to go down to the lobby and get it every day. Chris asks about mom every time I run into him, and provided me with translation for a lot of the medical-speak I hear now.

And then there's Ed. Ed is a widower who lives in the other building in the complex. His apartment is on the ground floor and faces the parking lot and Ed is the unofficial sentry for the buildings. He is always in the window watching the comings and goings. I usually park in the spaces in front of his apartment, and when I started my daily treks to mom, I started waving at him as I came and went. After a chance encounter by the recycling bins, we exchanged handshakes and names and now he watches for me. When I see him in person, his first question is always "how's your mam?" A couple of days ago, I was at mom's in the late afternoon with my daughter, and my husband finished work early and came to meet us at mom's apartment. When we left, Ed was camped out in his lawn chair by the picnic table because he'd seen both cars and was concerned that something was wrong.

My mom's health crisis has been hard on the family in Ottawa. Mom is the matriarch and her siblings are very protective of her. Not being able to just drop in has been hard on people hard-wired to nurture, coddle, worry and fuss. Depending on the day, mom may or may not remember they called 10 minutes after she hangs up the phone. On really bad days, mom doesn't remember to hang up the phone. It's hard to get an accurate read of how mom's health is, and mom doesn't always remember to tell them whether I had been over, whether she's eating, what the latest medical report was...they are relying on an unreliable source for information. Mom's also good at putting a brave front on things for the family because she doesn't want to worry them.

My mom has a bad habit of deciding my priorities for me without consulting me first. For example, I once had a medical secretary read me the riot act about the importance of a medical appointment that mom had in Toronto. When she stopped for a breath I asked her what she was talking about. Mom had told her that I was "too busy" to take her. Since I had just re-arranged my schedule and arranged for someone to take my daughter to and from school that day, it was news to me. I wasn't too busy, but mom had decided I was too busy and then communicated her view to the secretary. Over the years, she's communicated similar things to her family.

"The Family" has recently expressed concerns about how I've been taking care of my mom and the timing of decisions and actions. It's caused a serious, possibly irreparable rift in the family and currently, if my aunts are staying at my mom's, I stay away. The situation stresses my mom and I'm not going to add to it.

I was leaving mom's one evening and Ed was stationed in his lawn chair. I always stop to chat with Ed for a minute and he looked at me sharply and then asked me what was wrong. I told him about "the Family" concerns. In his Newfoundland drawl, Ed summed up the situation:

"They're all surmisin' and supposin' instead of askin' and investigatin'. I see you here every day, sometimes twice, and I see you with your mam. You're taking good care and you give them no mind."

It's funny how a casual stranger can see the truth of a situation. I understand "the Family" is acting out of concern for my mom. We have that in common. I understand that depending on how mom is on a particular day, she may or may not be able to give accurate information. Since mom came home from the hospital, the care team, CCAC, mom's family doctor and I have been on the same page-honouring mom's wish to stay in her apartment with support as long as it was safe and feasible for her to do so. She didn't qualify for long term care placement until very recently. Once she qualified, the case manager re-assessed her and we filled in the applications. I take copious notes of every meeting, every step and every decision so that I can reference it later. Mom's skin cancer is growing by leaps and bounds and is triggering neuropathic pain. She's fine one day and not fine the next. I'm in close contact with the family doctor and we adjust accordingly.

At the end of the day, I am accountable to my mom, her care team, to God and my conscience. At the end of the day, I need to be able to be at peace with the decisions made for my mom's care. I understand that distance has been hard on the family and I tried to keep them in the loop. If any of them wanted to know how things were going, all they had to do was call me or email me. Instead, they engaged in "surmising and supposing." They should have known me better than that. And that's what hurts the most.

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.