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.
Showing posts with label dementia. Show all posts
Showing posts with label dementia. Show all posts
Thursday, July 5, 2012
Sunday, May 20, 2012
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.
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.
Wednesday, May 16, 2012
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.
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.
Wednesday, May 9, 2012
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.
Wednesday, April 11, 2012
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.
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.
Tuesday, April 3, 2012
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.
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.
Friday, March 16, 2012
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.
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.
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.
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.
Saturday, March 3, 2012
It's the Dementia talking...isn't it?
My aunt has been here from Ottawa for a couple of days, so I've had a bit of a break from daily visits with mom. I actually stayed home all day on Thursday for the first time since January 25. I visited Aunt Clairol, and then I actually took a nap...bliss.
Yesterday was my husband's birthday, and he hadn't seen my aunt yet, so we popped in after dinner for a little visit. I gave mom the option of saying no, but she said come ahead. We should have stayed home.
I took all the information over on Friday about Long Term Care facilities. My mom has been fighting what is increasingly a losing battle with Squamous Cell Carcinoma-that's skin cancer in plain terms. She's had a number of these things surgically removed from her right forehead, and went through 6 weeks of radiation. They've grown back and they're spreading. Since her return home from hospital, she hasn't felt well enough to make a trip to the doctor's office, but it is rapidly becoming a necessity. The case manager thinks that the cancer is the tipping point for whether mom needs a retirement home or a nursing home. It could also turn out to be palliative care, which by-passes both. The case manager also thinks we should only move mom once. Hurry up and wait until we know what stage the cancer is at.
Mom has been touring a bit with the walker. I call it Myrtle. My aunt calls it Sally, but either way, it's becoming a companion rather than an adversary. While she still won't use it in the apartment, mom is slowly coming to terms with using it when we leave the apartment. Baby steps in the right direction, but I'll take them. Mom was tired last night, and I knew from being there earlier that she was having a "fuzzy" day-she was more confused than usual.
My mother has always been "plain spoken." She doesn't believe in sugar-coating what she has to say. For example, when she phoned me in Toronto to tell me that my father died, the conversation went like this. My mother never called me at work, so I knew something was up.
"It's your mother."
"Mom? What's wrong?"
"It's your father."
"What's wrong?"
"Well, he's dead."
Mom is blunt, but she isn't usually mean. Lately, though, as the enormity of the changes in her life close in on her, she's been lashing out at the only person she can-me. I know that these circumstances have rocked her to the core. I know that she is scared and confused and uncertain, and mom doesn't do any of these emotions. She is reacting to the circumstance, and since I'm the one creating a lot of it, I'm taking the brunt of the reaction. .My brain understands all of these things. My heart is struggling with the vitriol.
See, I've been there, done that. My dad was a loving, gentle man who would have scoffed at being called a feminist, but instilled in his daughter the belief that she could do anything. While he never told me he was proud of me, he apparently told the world at large. Unfortunately, my father also battled alcoholism, and he was a nasty drunk who heaped emotional abuse on me. He wouldn't remember the next morning what had been said, but I didn't have that luxury.
Maturity brings wisdom and understanding. The teenager didn't have the life experience to understand that the alcoholic dad and sober dad were too different beings. I've been able to forgive, although I still struggle with self-esteem and when I'm discouraged, it's hard to ignore the voice in my head telling me I'm a fat, stupid, ugly, lazy slut who will never amount to anything, even though I am none of those things. (Okay, I have to own fat and I'm not sure about ugly these days.)
Mom couldn't remember what she said last night when I talked to her this morning, which tells me it was the dementia talking. It still hurts. I have to acknowledge the emotion, but attribute the source. There's more to come, I suspect, so I'd better invest in some kevlar. It's going to be a bumpy ride.
Yesterday was my husband's birthday, and he hadn't seen my aunt yet, so we popped in after dinner for a little visit. I gave mom the option of saying no, but she said come ahead. We should have stayed home.
I took all the information over on Friday about Long Term Care facilities. My mom has been fighting what is increasingly a losing battle with Squamous Cell Carcinoma-that's skin cancer in plain terms. She's had a number of these things surgically removed from her right forehead, and went through 6 weeks of radiation. They've grown back and they're spreading. Since her return home from hospital, she hasn't felt well enough to make a trip to the doctor's office, but it is rapidly becoming a necessity. The case manager thinks that the cancer is the tipping point for whether mom needs a retirement home or a nursing home. It could also turn out to be palliative care, which by-passes both. The case manager also thinks we should only move mom once. Hurry up and wait until we know what stage the cancer is at.
Mom has been touring a bit with the walker. I call it Myrtle. My aunt calls it Sally, but either way, it's becoming a companion rather than an adversary. While she still won't use it in the apartment, mom is slowly coming to terms with using it when we leave the apartment. Baby steps in the right direction, but I'll take them. Mom was tired last night, and I knew from being there earlier that she was having a "fuzzy" day-she was more confused than usual.
My mother has always been "plain spoken." She doesn't believe in sugar-coating what she has to say. For example, when she phoned me in Toronto to tell me that my father died, the conversation went like this. My mother never called me at work, so I knew something was up.
"It's your mother."
"Mom? What's wrong?"
"It's your father."
"What's wrong?"
"Well, he's dead."
Mom is blunt, but she isn't usually mean. Lately, though, as the enormity of the changes in her life close in on her, she's been lashing out at the only person she can-me. I know that these circumstances have rocked her to the core. I know that she is scared and confused and uncertain, and mom doesn't do any of these emotions. She is reacting to the circumstance, and since I'm the one creating a lot of it, I'm taking the brunt of the reaction. .My brain understands all of these things. My heart is struggling with the vitriol.
See, I've been there, done that. My dad was a loving, gentle man who would have scoffed at being called a feminist, but instilled in his daughter the belief that she could do anything. While he never told me he was proud of me, he apparently told the world at large. Unfortunately, my father also battled alcoholism, and he was a nasty drunk who heaped emotional abuse on me. He wouldn't remember the next morning what had been said, but I didn't have that luxury.
Maturity brings wisdom and understanding. The teenager didn't have the life experience to understand that the alcoholic dad and sober dad were too different beings. I've been able to forgive, although I still struggle with self-esteem and when I'm discouraged, it's hard to ignore the voice in my head telling me I'm a fat, stupid, ugly, lazy slut who will never amount to anything, even though I am none of those things. (Okay, I have to own fat and I'm not sure about ugly these days.)
Mom couldn't remember what she said last night when I talked to her this morning, which tells me it was the dementia talking. It still hurts. I have to acknowledge the emotion, but attribute the source. There's more to come, I suspect, so I'd better invest in some kevlar. It's going to be a bumpy ride.
Friday, February 24, 2012
Stalling
I'm stalling. I should be on my way to my mom's. Yet here I am, posting a blog instead of driving. I'm stalling.
My mom has been home two weeks tomorrow. Yesterday, she had another cognitive assessment to see if the dementia that showed in the hospital had resolved since being back in her own home. Some of it had-she kicked butt counting backwards this time. Some of it was worse-things she could do in the hospital she couldn't do yesterday. The Occupational Therapist echoed the opinion of the case manager: "we think you would be safer in a retirement home."
And there it is, my mother's two worst nightmares encompassed in one sentence. Her grandmother and great-aunt lived with her family when she was a child. They were both "senile", the word used to describe dementia then. Mom has lived in terror of losing her mind since then. Now it appears to be happening, faster than either of us thought possible.
My mother's other worst nightmare was losing her ability to live on her own, and having to move to "one of THOSE places." She had a simple and profound conviction that God would let her die before she had to make the move. On the day before she came home, she was still vehemently and loudly proclaiming that she was not going to one of THOSE places, and we couldn't make her. "I still have some rights, and I won't go."
And then she came home. While she didn't say anything to me, mom confessed to her sister she "should have stayed in the hospital." . Home is no longer a safe and comforting place. I live in terror of her falling again, and since the recalcitrant senior flat out refuses to use the walker, it's a real and constant possibility. I make sure she has a good meal at noon, and she's still lost 3 lbs since being home. I've now filled her fridge with Ensures, yogurt and coconut cream pie. She's not starving on my watch.
She's starting to accept that her days in her apartment are numbered. Because she is still my mom, and worrying is an Olympic-class pastime in our family, she worries about me coming every day because she knows my work is suffering. She finally acknowledged that we can't keep things going like this indefinitely.
But I can pretend. I can sit in my house and imagine things at mom's apartment as they used to be. Until I go and deal with the new reality, I can cling to the old. I can remember my mother as the hustling, bustling, cleaning and tidying, baseball-watching, politics following person she always was, instead of this tiny, scared, confused old woman who suddenly appeared. I can pretend that mom can still make things all right in my world, instead of being the person who has to make things all right in hers. I can pretend she is still my rock instead of now being her rock, her grounding, the person whose eyes she looked for in panic when she couldn't get the words in the cognitive test. I can pretend my mom is still there, and the ten year old kid in me can still go there to be comforted and protected, instead of being the adult who must now do the comforting and protecting. I can keep mom's nightmares away for awhile, until I walk into her apartment and become the person who must bring those nightmares into our reality.
As long as I stall, I can still be the child who isn't ready to lose her mom yet, instead of the adult who in so many ways already has. I can still pretend, because the reality is so unfair and harsh, and yet must be dealt with. And so I'm stalling for a few minutes more, but time is ticking and mom is waiting. And so I go. I will walk into this dual nightmare, and we will face it and figure it out. And I will be the cause of making one of mom's nightmares come true as we start to find a new place for her to live. And I will do what's right for mom. And it will break my heart in the process.
My mom has been home two weeks tomorrow. Yesterday, she had another cognitive assessment to see if the dementia that showed in the hospital had resolved since being back in her own home. Some of it had-she kicked butt counting backwards this time. Some of it was worse-things she could do in the hospital she couldn't do yesterday. The Occupational Therapist echoed the opinion of the case manager: "we think you would be safer in a retirement home."
And there it is, my mother's two worst nightmares encompassed in one sentence. Her grandmother and great-aunt lived with her family when she was a child. They were both "senile", the word used to describe dementia then. Mom has lived in terror of losing her mind since then. Now it appears to be happening, faster than either of us thought possible.
My mother's other worst nightmare was losing her ability to live on her own, and having to move to "one of THOSE places." She had a simple and profound conviction that God would let her die before she had to make the move. On the day before she came home, she was still vehemently and loudly proclaiming that she was not going to one of THOSE places, and we couldn't make her. "I still have some rights, and I won't go."
And then she came home. While she didn't say anything to me, mom confessed to her sister she "should have stayed in the hospital." . Home is no longer a safe and comforting place. I live in terror of her falling again, and since the recalcitrant senior flat out refuses to use the walker, it's a real and constant possibility. I make sure she has a good meal at noon, and she's still lost 3 lbs since being home. I've now filled her fridge with Ensures, yogurt and coconut cream pie. She's not starving on my watch.
She's starting to accept that her days in her apartment are numbered. Because she is still my mom, and worrying is an Olympic-class pastime in our family, she worries about me coming every day because she knows my work is suffering. She finally acknowledged that we can't keep things going like this indefinitely.
But I can pretend. I can sit in my house and imagine things at mom's apartment as they used to be. Until I go and deal with the new reality, I can cling to the old. I can remember my mother as the hustling, bustling, cleaning and tidying, baseball-watching, politics following person she always was, instead of this tiny, scared, confused old woman who suddenly appeared. I can pretend that mom can still make things all right in my world, instead of being the person who has to make things all right in hers. I can pretend she is still my rock instead of now being her rock, her grounding, the person whose eyes she looked for in panic when she couldn't get the words in the cognitive test. I can pretend my mom is still there, and the ten year old kid in me can still go there to be comforted and protected, instead of being the adult who must now do the comforting and protecting. I can keep mom's nightmares away for awhile, until I walk into her apartment and become the person who must bring those nightmares into our reality.
As long as I stall, I can still be the child who isn't ready to lose her mom yet, instead of the adult who in so many ways already has. I can still pretend, because the reality is so unfair and harsh, and yet must be dealt with. And so I'm stalling for a few minutes more, but time is ticking and mom is waiting. And so I go. I will walk into this dual nightmare, and we will face it and figure it out. And I will be the cause of making one of mom's nightmares come true as we start to find a new place for her to live. And I will do what's right for mom. And it will break my heart in the process.
Thursday, February 23, 2012
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.
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.
Monday, February 20, 2012
"When Grandma gets better..."
My mother and my daughter are the best of friends. From the time my mom first laid eyes on her granddaughter, it's been a closer than close relationship. The Kid loves going to grandma's house, where "grandma lets her do anything." From filling the bathtub to the rim to eating ice cream out of a crystal ashtray, eating ice cream right out of the container to drinking juice out of the crystal wine glasses, grandma's apartment is a magical place.
On nights when my husband had to work and I had other commitments, the Kid would go and hang out at Grandma's until daddy was finished work. She packed up her treasures, ransacked my mom's apartment, and although my mom was laid out the next day, she lived for those mother-granddaughter moments.
We did try a sleepover once, even though my kid didn't "sleep" in those days (we hadn't discovered melatonin yet). We were at a stag and doe for our friend's daughter when my cell phone rang at 2330 hrs. It was my mother, 'fessing up that she had fallen getting out of bed on the wrong side (because the Kid was lying beside her in the twin bed) and had "cut her hand." For my mother to be admitting that she cut her hand, I knew it was bad, so we headed over to my mom's immediately.
What my mother described as "cutting her hand" was in actuality a wound that needed 28 stitches. My mother took daily prednisone for years and her skin is like rice paper. She had hit her hand on the door knob when she fell and peeled all the skin off the back of her hand. She and my then 5 year old had managed to bandage it, and my amazing little girl tried to help grandma clean up the blood. Mom had a rubber glove on it to stop the blood from seeping through, and wasn't going to tell me until she started to feel light-headed and decided that maybe it wasn't a good idea...The Kid took it all in stride, but was pretty happy to see grandma the next morning.
All of our lives have changed since mom's medical crisis. The Kid is very empathic, intuitive and tuned into the vibrations of the house and of others. Her anxiety went off the charts when my mom went into crisis. The Kid who would call grandma five times a day if I let her refused to talk to grandma on the phone, and didn't want to visit grandma in the hospital.One visit to hospital to see grandma sent her OCD and Anxiety off the charts and gave the teacher a very difficult couple of days.
The Kid knows that sometimes grandmas don't come home from hospital because her paternal grandma didn't and is now an angel. Once my mom was home and settled into her apartment again, the Kid and my husband came over. It's different now-grandma is frail and weak and can't do the things she could do even a couple of months ago. The Kid is getting back into the habit of phoning grandma to tell her tales. The Kid loves repeating and grandma won't necessarily remember so it's a win-win.
The Kid is pretty smart, but she's still a child. She keeps making future plans that begin with "when Grandma is well enough to babysit me again..." A couple of days ago, she lay on the couch, her head on grandma's lap, my mother gently smoothing the Kid's hair. The Kid was talking a blue streak, making all kinds of plans that started with "when Grandma gets better and she can babysit again..." My mother looked up and caught my eye, and then looked away as my eyes welled with tears. We both know Grandma's babysitting days are over.
I have always been very cognizant of the fact that Grandma and Granddaughter have a finite amount of time together. I pray that it will be long enough for my daughter to remember her grandma. My mother, on her 80th birthday, announced to the whole family that "the Kid was her reward for 80 years of living" and that was true. It breaks my heart to see that relationship change, but it's not safe to leave my daughter alone with grandma any more, for either one of them.
My maternal grandmother was one of the most influential women in my life. She loved fiercely, told it as she saw it, and called us out when we were doing something she didn't approve of. She was all of 5 feet tall and weighed about 98 lbs in full clothes. She once took on a drug dealer with a cast iron frying pan because he turned up on the doorstep and threatened my cousin. We always knew that grandma loved us no matter what, even if she didn't particularly LIKE our choices at a given point in time. May my daughter know that her grandma loves her like that and may she remember it.
On nights when my husband had to work and I had other commitments, the Kid would go and hang out at Grandma's until daddy was finished work. She packed up her treasures, ransacked my mom's apartment, and although my mom was laid out the next day, she lived for those mother-granddaughter moments.
We did try a sleepover once, even though my kid didn't "sleep" in those days (we hadn't discovered melatonin yet). We were at a stag and doe for our friend's daughter when my cell phone rang at 2330 hrs. It was my mother, 'fessing up that she had fallen getting out of bed on the wrong side (because the Kid was lying beside her in the twin bed) and had "cut her hand." For my mother to be admitting that she cut her hand, I knew it was bad, so we headed over to my mom's immediately.
What my mother described as "cutting her hand" was in actuality a wound that needed 28 stitches. My mother took daily prednisone for years and her skin is like rice paper. She had hit her hand on the door knob when she fell and peeled all the skin off the back of her hand. She and my then 5 year old had managed to bandage it, and my amazing little girl tried to help grandma clean up the blood. Mom had a rubber glove on it to stop the blood from seeping through, and wasn't going to tell me until she started to feel light-headed and decided that maybe it wasn't a good idea...The Kid took it all in stride, but was pretty happy to see grandma the next morning.
All of our lives have changed since mom's medical crisis. The Kid is very empathic, intuitive and tuned into the vibrations of the house and of others. Her anxiety went off the charts when my mom went into crisis. The Kid who would call grandma five times a day if I let her refused to talk to grandma on the phone, and didn't want to visit grandma in the hospital.One visit to hospital to see grandma sent her OCD and Anxiety off the charts and gave the teacher a very difficult couple of days.
The Kid knows that sometimes grandmas don't come home from hospital because her paternal grandma didn't and is now an angel. Once my mom was home and settled into her apartment again, the Kid and my husband came over. It's different now-grandma is frail and weak and can't do the things she could do even a couple of months ago. The Kid is getting back into the habit of phoning grandma to tell her tales. The Kid loves repeating and grandma won't necessarily remember so it's a win-win.
The Kid is pretty smart, but she's still a child. She keeps making future plans that begin with "when Grandma is well enough to babysit me again..." A couple of days ago, she lay on the couch, her head on grandma's lap, my mother gently smoothing the Kid's hair. The Kid was talking a blue streak, making all kinds of plans that started with "when Grandma gets better and she can babysit again..." My mother looked up and caught my eye, and then looked away as my eyes welled with tears. We both know Grandma's babysitting days are over.
I have always been very cognizant of the fact that Grandma and Granddaughter have a finite amount of time together. I pray that it will be long enough for my daughter to remember her grandma. My mother, on her 80th birthday, announced to the whole family that "the Kid was her reward for 80 years of living" and that was true. It breaks my heart to see that relationship change, but it's not safe to leave my daughter alone with grandma any more, for either one of them.
My maternal grandmother was one of the most influential women in my life. She loved fiercely, told it as she saw it, and called us out when we were doing something she didn't approve of. She was all of 5 feet tall and weighed about 98 lbs in full clothes. She once took on a drug dealer with a cast iron frying pan because he turned up on the doorstep and threatened my cousin. We always knew that grandma loved us no matter what, even if she didn't particularly LIKE our choices at a given point in time. May my daughter know that her grandma loves her like that and may she remember it.
Tuesday, February 14, 2012
Parenting Fail
It's 8:20 am. My daughter and I are scurrying around, trying to make it out the door to school. She's in the hall getting her boots and coat on while I brush my teeth. It's Valentine's Day, and she wants to get there early. Valentine's Day is bigger than Christmas when you're in Grade 1.
And then the phone rings. Since all of my friends and family know my kid starts school at 8:30am it can only be bad news or something to do with my mom. Sure enough, it's the physiotherapist wanting to re-commence her physio sessions. He also wants to know what the hospital determined with my mother, because he saw her before and after what I still suspect was the second mini-stroke. I explain that I'm rushing out to school, but he has appointments he has to make, so we agree on a time for Friday morning.
I sprint downstairs because now it's 8:29 am and the bell will ring any second. My daughter is fuming in the front hall because she wanted to be early. We hurry to the car, which my husband has thoughtfully cleared of snow for me, head to school and pull into the drive-through. The school yard is empty. Parenting fail.
I drove to Walmart after choir last night, and joined a bunch of other last-minute shoppers pawing through Valentine presents. While I had remembered the card for my husband, mom and daughter, I forgot that for my daughter, the present had to be there before school. 2330 hrs is not the time to be indecisive, so I headed for the Barbie aisle and came home with another Barbie and some clothes. My daughter was thrilled this morning, but it was thanks to my husband that I made the trip after he asked if I had anything for our daughter for Valentines Day as I was heading out the door last night. I always take care of that kind of thing.
And therein lies the problem. I always take care of things. I take care of the schedules, the cards, the birthday presents, the dinners, and now, my mother, her appointments, her meds, her hygiene. I always take care of things...
How am I going to do this every day?
And then the phone rings. Since all of my friends and family know my kid starts school at 8:30am it can only be bad news or something to do with my mom. Sure enough, it's the physiotherapist wanting to re-commence her physio sessions. He also wants to know what the hospital determined with my mother, because he saw her before and after what I still suspect was the second mini-stroke. I explain that I'm rushing out to school, but he has appointments he has to make, so we agree on a time for Friday morning.
I sprint downstairs because now it's 8:29 am and the bell will ring any second. My daughter is fuming in the front hall because she wanted to be early. We hurry to the car, which my husband has thoughtfully cleared of snow for me, head to school and pull into the drive-through. The school yard is empty. Parenting fail.
I drove to Walmart after choir last night, and joined a bunch of other last-minute shoppers pawing through Valentine presents. While I had remembered the card for my husband, mom and daughter, I forgot that for my daughter, the present had to be there before school. 2330 hrs is not the time to be indecisive, so I headed for the Barbie aisle and came home with another Barbie and some clothes. My daughter was thrilled this morning, but it was thanks to my husband that I made the trip after he asked if I had anything for our daughter for Valentines Day as I was heading out the door last night. I always take care of that kind of thing.
And therein lies the problem. I always take care of things. I take care of the schedules, the cards, the birthday presents, the dinners, and now, my mother, her appointments, her meds, her hygiene. I always take care of things...
How am I going to do this every day?
Monday, February 13, 2012
Guilt
What a useless emotion guilt is. My mind gets busy in the wee small hours, spinning like a hamster on the wheel about things in my life, my daughter's life, my husband's life, my mother's life-things that are what they are, and yet the guilt creeps in.
Did I miss the signs of my mother's dementia? Sure she was confused sometimes, hunting for a baseball player's name (my mom should coach the Toronto Blue Jays), a politician's name (her other passion), struggling to remember a date-but was I subconsciously enabling her? Was I so used to feeding her the names, information that I missed the signs? I don't know, and it's eating me inside.
One thing I know for certain: even though it didn't show on the MRI, something significant happened to my mom on January 14. Whether the whack on the head triggered the something, or the something triggered the collapse that caused the whack on the head, something critical changed. My mom spiralled down in two weeks, going from managing pretty well on her own to forgetting to eat, forgetting to take her pills and wishing that death would put an end to it all.
After 2 weeks in hospital, she's more stable and alert, but the confusion comes and goes. She was pretty mad at me yesterday morning because she didn't have her pills. I had hidden them when I left the night before because I was afraid she would forget and take them. Turns out, I made the right call because she was looking for her "night time pills." Since hospitalization, there isn't a night time pill any more. I told her where the pills for the morning were, and I have to get the prescriptions filled when the pharmacy opens this morning.
When mom was in the hospital, I didn't have to worry about her falling, forgetting to eat, forgetting to take her meds...it was off my shoulders for awhile. I didn't have to rush right over after dropping my daughter at school. All bets are off now, and home care is supposed to be coming in, but they haven't started yet.
I have articles due, edits due. I have to take care of my daughter, my work, my family...and now my mom again. Somewhere, I also have to squeeze time for me if I want to keep going. I'm going to try to go back to choir tonight. I need something just for me again.
When we were doing daily radiation, we had a couple of days when we didn't go, and it was such a blessed relief not to have to run. Did it make me a bad person to be thankful for a morning when I could sit rather than sprint? Probably not, but I felt like one.
Guilt is such a waste of energy, and yet it creeps in. Maybe it's the Catholic in me, maybe the Irish. At any event, it's another dragon to slay, but later. The kid has to get to school first.
Did I miss the signs of my mother's dementia? Sure she was confused sometimes, hunting for a baseball player's name (my mom should coach the Toronto Blue Jays), a politician's name (her other passion), struggling to remember a date-but was I subconsciously enabling her? Was I so used to feeding her the names, information that I missed the signs? I don't know, and it's eating me inside.
One thing I know for certain: even though it didn't show on the MRI, something significant happened to my mom on January 14. Whether the whack on the head triggered the something, or the something triggered the collapse that caused the whack on the head, something critical changed. My mom spiralled down in two weeks, going from managing pretty well on her own to forgetting to eat, forgetting to take her pills and wishing that death would put an end to it all.
After 2 weeks in hospital, she's more stable and alert, but the confusion comes and goes. She was pretty mad at me yesterday morning because she didn't have her pills. I had hidden them when I left the night before because I was afraid she would forget and take them. Turns out, I made the right call because she was looking for her "night time pills." Since hospitalization, there isn't a night time pill any more. I told her where the pills for the morning were, and I have to get the prescriptions filled when the pharmacy opens this morning.
When mom was in the hospital, I didn't have to worry about her falling, forgetting to eat, forgetting to take her meds...it was off my shoulders for awhile. I didn't have to rush right over after dropping my daughter at school. All bets are off now, and home care is supposed to be coming in, but they haven't started yet.
I have articles due, edits due. I have to take care of my daughter, my work, my family...and now my mom again. Somewhere, I also have to squeeze time for me if I want to keep going. I'm going to try to go back to choir tonight. I need something just for me again.
When we were doing daily radiation, we had a couple of days when we didn't go, and it was such a blessed relief not to have to run. Did it make me a bad person to be thankful for a morning when I could sit rather than sprint? Probably not, but I felt like one.
Guilt is such a waste of energy, and yet it creeps in. Maybe it's the Catholic in me, maybe the Irish. At any event, it's another dragon to slay, but later. The kid has to get to school first.
Sunday, February 12, 2012
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
- 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.
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.
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.
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