"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.

Guilt Part 2

I've been sick for a week with a nasty chest infection that stole my voice a week ago and has yet to return it. I've finished the first round of antibiotics but I'm still nowhere near 100%. Last week, I went to bed Friday night and I got up on Tuesday when my husband went back to work. I missed choir practice, I missed singing at 3 funerals and I generally still feel crappy. I had to do interviews with a Kermit the Frog voice or by email.  The Kid thinks it's hilarious. Me, not so much.

It's March Break (spring break) this week, so the Kid has been home. She's pretty good at keeping herself busy, but is still feeling a bit neglected because I've also had lots of deadlines.

The big problem, and therefore source of the most guilt, was the inability to go see my mom every day. I was there last Friday, and then I didn't go again until Tuesday. My husband and daughter did a Dairy Queen drive-by to mom on Saturday, but no one but home care went on Sunday and no one at all went on Monday because home care didn't show up.

• I know I needed to get better, and the only way to do that is to give up and be sick first.I haven't been this ill in years.
• I knew that this illness was the last thing my mom needed to deal with right now. she has chronic asthma and this thing goes straight for the bronchial tubes.
• I found out on Tuesday that mom forgot to take her pills on Monday because home care didn't come and hand them to her. I forgot to remind her to take her pills because I'm used to home care making sure she took them. Still beating myself up over THAT one.
• Mom didn't eat properly all weekend. She kept saying she was having beef and corn, which I know for a fact had been in her fridge since the prior week. It was also still there on Tuesday morning, so I'm not sure other than Ensure what she consumed all weekend.

 I'm struggling. My mom is still a mom, and she was worried about me because  did I mention I havent;'t been this sick in years? She kept telling me to stay home and she was fine. I talked to her multiple times a day and she seemed to be managing fine.

Now I know how she spiralled so far so fast. She seemed to be managing fine the last time too. The difference is this time, I know what to look for. I had to go out last night, so my husband and daughter dropped over because her housekeeper is coming today and I forgot to leave the cheque when I was there on Wednesday. My husband checked when he got there, and mom hadn't remembered to eat yet, so he got her dinner. It takes a family to support an elderly parent and my husband has really stepped up this week when I fell to illness.

I know that I needed to stay home if I had any hope of getting better. I'm still beating myself up because I couldn't take care of mom and make sure she ate, was taking her pills etc. I haven't gotten there every day this week either because it's March Break and I have deadlines and a kid home from school.

I'm feeling really squeezed today. Time to step away from the keyboard and spend time with my kid...after we go check on my mom.

Observations from the ER

Since January 14, I've spent 33 hours sitting in ER with my mother. I've learned a few things along the way.

• Our health care system is broken.  Spend even a few minutes in ER and you know Ontario has a big problem. People with possible broken bones, wounds requiring stitches and coughs and colds share space with people who might be having a heart attack, pneumonia or a stroke. When doctors' offices close for the day, patients are instructed to "go to the nearest ER." instead of using a walk-in clinic. Doctors are penalized if their patients use an after-hours or walk in clinic instead of the ER. This is just wrong.

• People don't seem to understand the "emergency" part It's been my observation that the people who complain the loudest are often the ones who probably shouldn't be there in the first place. And once you've already invested 4-5 hours, you might as well just suck it up and wait it out. If you don't want to wait, then maybe you shouldn't have been there in the first place. I sat next to a guy on the 27 hour day with my mother who gave up and went home after 6 hours. 10 minutes later, they called his name. Dude, you should have waited or not come in the first place.

• Hospital parking fees are usurious. The Canadian Medical Association Journal recently called for hospitals to scrap parking fees, because patients may rush appointments because of the cost of the parking. http://www.montrealgazette.com/health/Medical+journal+calls+hospitals+scrap+parking+fees/5778290/story.html 

 When my mother was having daily radiation, I paid $35 a month for a  parking pass that allowed unlimited entry and exit. That was much cheaper than the $10/day average. When my mother was hospitalized at a different hospital this time (often thought to be the more "caring" one for patients in town) I nearly joined my mother in a hospital bed when I found out that the "preferred rate" was $60 a week. A WEEK. It allowed for unlimited in and out. Since I was going twice a day for the first few days, I sucked it up, but $120 for 2 weeks of parking? That's obscene, especially when there is no other option.

• Medical emergencies go in waves  The night my mother and I sat in ER after she hit her head, she was one of 4 with head injuries-2 old women, a very busy 18 month old baby and a hockey player. The night we waited 27 hours, it was "try to cut off your hand" night. I counted four people with bloody digits, including a chef at the Bauer Kitchen who discovered that the slicing blade was quite sharp enough, thank you.

• Medical staff are amazing. Admin staff, not so much. The care that my mother has received has been exemplary. Once we managed to run the gauntlet to see a doctor, we received undivided attention, care and concern. The medical staff are overworked, understaffed and run off their feet, yet they do little things like bring heated blankets. My experiences with the administrative side, however is not positive, with a couple of exceptions. It took me 3 tries to have my parking permit renewed when my mother was having radiation, because it wasn't entered properly in the system. Both the cashier and the security guard treated me like a miscreant trying to rip off the hospital when I was just a caregiver trying to get out of the garage. My bad for being efficient and renewing early. I stepped in and helped an elderly gentleman a couple of days ago who was confounded by the parking ticket machine. He was just trying to pay his ticket and leave, but the machine wasn't taking coins or credit card, he didn't have any paper money...and he didn't speak English. The security guard's attitude was "tough luck, buddy, can't help you." although we were standing within inches of an ER full of humanity. I poked my head in, asked if anyone spoke the language in question, got help for the old man, and then went on my way. Security guard could have done the same thing, but chose not to. May he never be in a similar position in a foreign country.

• Ratios The amount of time you wait is directly proportional to how long since your last meal. Both times I sat for extended periods with my mom, I did so without dinner and lunch had been a long time before that. Tim Horton's would make a fortune with a rolling coffee cart in ER. Both times, I couldn't leave my mother to go get provisions.

• Television  While television may be a distraction, watching the same damn show for 8 hours repeated over and over is just annoying.

• Full moon  Anyone who has worked with the public will tell you this-the lunar cycle has an influence on people. I've sat in the ER on a full moon, and let me tell you, the loonies get sick on a full moon. They may also provide quality entertainment. I know when I worked in Customs we didn't even have to look outside to know when it was a full moon. If the loonies aren't in the ER, they've taken to the airways. And if said loony is brought in by ambulance, is pacing back and forth and muttering, leaving him in a waiting room full of people with a door that opens to the outside might not be the best plan of action. And if said loony then vacates the premises, it shouldn't be a surprise.

• Dating  Note to the young man who brought his buddy with the half-amputated finger into the ER who kept "chatting" with the two young women waiting for medical treatment. The ER is not a good place to try to pick up women. They weren't interestedl; they were trapped. They were not that into you, they just didn't want to move and lose their chairs.

The ER is no place for sick people. Note to self: always charge the e-reader.

Call me Chicken Salad

The Sandwich Generation is such an odd term. While I am sandwiched between a child in grade 1 and an elderly mother who has just been diagnosed with dementia, "sandwich" isn't quite the word I'd use. Lately, I've felt more like a boob in the middle of a mammogram than a sandwich filling. A filling has room to spread to accommodate the bread on either side; the boob, not so much.

My mother and I are rapidly becoming frequent fliers in the Ontario health care system. In the last year, my mom has had several treatments, including 6 weeks of radiation for Squamous Cell Carcinoma, and is currently growing two new lumps in the same general vicinity. We spent 12 hours in ER a couple of years ago because mom fell getting out of bed and peeled the skin off the back of her hand like a banana. 28 stitches to fix that one. We spent another 4 hours because she had whacked her leg and developed a giant blood blister that had to be surgically drained. And in the last 3 weeks, we've spent 33 hours in ER because she fell and whacked her head, which caused a series of events that resulted in a 27 hour wait in hospital, and a 2 week hospitalization, most of which mom only has a hazy recollection of.

And on the other side of the coin, my daughter is in grade 1. Thanks to her birth mother, she has Obsessive-Compulsive Disorder and Anxiety Disorder that we know of. She has symptoms of ADHD, but isn't "bad" enough for a clinical diagnosis, and she may or may not have Fetal Alcohol Spectrum Disorder. Some of her OCD manifests in hoarding and repetition. She also fixates, usually on people. Her Anxiety manifests in maniacal laughter that tends to escalate. She also screams alot when she's stressed-I mean full on, multi-octave, rattle the ear screams which is often reserved for when she's in the back seat of the car. If it's at rush hour, or in the middle of a round-about so much the better.

My daughter and my mom are tight. My super-strict mother who still tries to tell her 49 year old daughter what to wear, and still feels she needs to remind me to get my work done folds like a deck chair when it comes to my daughter. I once came back from a meeting to find my daughter eating ice cream out of a crystal ashtray. My mother only recently gave up playing hide and seek with her granddaughter. On January 14, my mother collapsed as she was walking up to the door of her apartment building after church. She hit her head on the pavement, and she was conscious but not cognizant. And my daughter witnessed the whole thing. Mom and I spent 6 hours in ER that night, and that event triggered a chain reaction downward spiral that led to the 2 week hospitalization.

My daughter already knows that sometimes when grandmas go into hospital, they don't come out again. We lost my husband's mother to cancer a year ago, and my daughter went to the hospice every night to hang with grandma. So when my mother went into hospital, her anxiety kicked into overdrive. We took her up to see my mom one night, and she was right off the charts at school for the next two days. My mom needed a granddaughter fix; my daughter couldn't handle another grandma in hospital. Parenting fail.

So I juggle. I juggle the needs of a young special needs child with an elderly parent trying to cope and come to terms with her worst nightmare. I juggle the roles of writer, editor, wife, mother, friend and try not to lose myself in the process. Sometimes the balls slip, and sometimes I choose to put one down. I make the best decision I can with the information I have at the time. Sometimes I make the wrong one. My husband helps as he can and my friends keep me sane. But then, as we're finding out with mom, sanity is a relative concept.