"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.

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.

Enjoy Now

I read "The Happiness Project" before Christmas. I have a list on my bathroom mirror of the points that resonated with me that I want to keep remembering. One of them is "enjoy now." The idea behind that one is that we all plan to be happy when we write the big novel, get the big promotion, move to the big house...and we forget to take pleasure in the "now."

The last couple of weeks with mom have been really draining, to the point that I ended up in ER for the day last week because my blood pressure and the sustained stress copped an attitude and gave me a wake up call that included a 7am ambulance ride and blood pressure being monitored every 15 mins. I rang the bell on the monitor all but 2 times...but I digress.

My new normal with mom is to let myself in, and then find her sleeping, usually on her bed, still in her pyjamas. She's waiting to die, and dying in bed is preferable to dying on the couch, apparently. There really isn't a medical reason for mom to die right now, but the Harvey stubborn is not something to trifle with, and mom has it in abundance.At one point I had to remind my fastidious, neat freak mom that she needed to reacquaint herself with basic hygiene because she was a bit ripe. I never though I would ever have to tell my mom to bathe.  So for the past two weeks, I go and see mom, and she lies on the couch and tells me how much she wants to be done with this existence, and I hold her hand and say "I know mom." I hold my breath every morning until she answers the phone. And some days I stall about going over because in so many ways, my mom is already gone, replaced by a confused, frail old woman who has given up.

So imagine the joy I had yesterday, when, as I turned the key in the lock, a voice called out-a strong, certain voice-"is that you dear?" Not only was mom having a "non-fuzzy" day-she was lucid, she was completely aware-she was sitting on the couch reading her paper, and could remember who the candidates for the Republican nomination in the US were, and why it was significant that Rick Santorum withdrew from the race yesterday. She hasn't read the paper, watched the news or even cared about baseball for 2 weeks.  We had a nice lunch-she actually ate something instead of just drinking Ensure and going back to sleep. We had a great talk instead of me repeating things five times and blinking back tears at the incomprehension in mom's eyes while she put on a brave face and nodded as if she was following the conversation. She asked about what was going on at home, remembered we'd been at my father-in-law's for dinner on Saturday, wanted to genuinely know what was going on in the world and when I left, she was watching a baseball game. I had my mom back.

I can tell from the phone call this morning that today is not as good. Days like yesterday are going to be more fleeting. Instead of beating myself up because I went a bit late and didn't have a longer visit (I went back to bed yesterday because it's what I needed to do, and I'm paying more attention to my health after the clear warning from the Universe I got) I enjoyed the now and thanked God for a day with my mom back the way she was before this hell we descended into began.

For a few brief hours yesterday, I had my mom back. Enjoy now.

Hedgehog

An acquaintance of mine once told me that I was a hedgehog-I could be quite prickly on the outside, but that was only to hide the soft, gentle heart inside. I was offended at the time, probably because this quasi-stranger had cut through the mask to the heart of the matter.

I'm hedgehogging these days. I'm curling in on myself, armour out as I deal with this increasing nightmare. Where did my mother go? Who is this stranger who has replaced the opinionated, strong, feisty, proud, independent, politics-loving, Toronto Blue Jays fan who grabbed the sports section first every morning?

Mom has given up. My mother, who never backed away from challenges in her life; who met everything head on, shoulders back and feet planted, now spends her days sleeping, waiting to die. I saw a glimmer of the old mom yesterday, because she was really ticked when she woke up yesterday, because she, well, woke up. "Why can't this just be over? Why am I hanging on?"

I sit with mom now everyday as she lies on the couch. She can't stand the noise of the television, and she's not reading her paper anymore. I hold her hand and we sit in silence. She talks about how she wants this existence to be over. I told her a couple of days ago that it was okay to go. Love doesn't die and only her body was leaving. I made her smile when I reminded her that she would never be able to let go of the belief that I wouldn't know how to dress appropriately without her telling me what to wear, and a little thing like death wasn't going to stop that.

I can see her slipping away day by day. I can't stand this existence for her. Mom deserves better. So I put on my mask, hold mom's hand and tell her it's okay to die. And I lie to my mom. I don't want her in this hellish existence her life has become since January. I love my mom too much to want her to go through any more of this. In so many ways, I'm already grieving the loss of my mom.

Time is a gift. Old age is no place for sissies. And hedgehog is the only way I know how to get through this and let mom go.