Monday, December 17, 2012
Wednesday, December 5, 2012
When it's all been said and done
This picture was taken a year ago when my mom's siblings came to celebrate her 85th birthday, before the radiation and spiral downward began. It's how I want to remember my mom.
My mom died almost 2 weeks ago, holding my hand. The inoperable squamous cell carcinoma (skin cancer) that we had been dealing with for years had spread across most of her head, through the bone into her brain, had probably gone into her right eye and had turned septic. Mom died of advanced sepsis and watching septic shock take her life is not an experience I would wish on anyone. Like most of our lives together, at the end it was just mom and I, sitting holding hands, except my other hand was on her wrist checking for a pulse and mom was in a deep coma, rasping breath followed by convulsion slowly fading.
When you are an only child it's all on you. There is no tagging off, there is no trading out. There is no one to play bad cop to your good cop; all the decisions, all the choices fell to me. Mom was never one to shy away from a tough subject, so we had had many conversations about what her wishes were at the end of her life. She had been firm in her instructions that no extraordinary measures were to be taken. When sepsis was confirmed, and before mom slipped into unconsciousness, I asked her one more time if that was what she wanted. She was lucid, and said "there's no point in prolonging this." A mother to the end, I knew she didn't want to leave me, so I told her that I would be fine, that I was okay and had lots of friends to take care of me. I told her it was time for her to go because love never dies. While she was still lucid, I asked her to send me a sign that she had made it safely to heaven. After my father died, mourning doves starting showing up regularly. I asked mom to send me a cardinal as a sign, and she agreed. A few hours after she died, I looked out my kitchen door and there was a female cardinal sitting on the railing of the deck looking in, the male nowhere to be found. Mom kept her final promise to me. A little while later, a single mourning dove showed up. Mom and dad are looking out for me.
I am still a mother, too, and my daughter had a Christmas party to go to the morning after my mom died. My husband and I decided not to tell her until after the party. Mom would have been really ticked if her beloved granddaughter had missed a Christmas party, and mom wasn't going to be any more dead if we waited a few hours to break my daughter's heart. Her grief is coming out in unusual ways. She was really angry with me the first few days after mom died, I think because I was supposed to fix things, and I couldn't fix this. While we were driving to drop her off so my husband, my cousin and I could clear the contents of mom's room, the Kid asked how grandma was going to buy her Christmas presents. I told her Grandma already did, which was true. "No, next year..." she said. It broke my already broken heart. She's become very clingy, and I just take the emotion as it comes. She has a right to grieve however she needs to.
My mother used to tell me that she grieved her father too much to cry, and I never understood that. I do now. I do not wish my mom back in the hellish existence of the last year but I miss my mom in a million little ways every moment. I have been grieving the loss of my mom for 11 months, as she slipped away bit by bit, pieces of our life together falling away as her health deteriorated and she moved to a nursing home. This is different. It's a sadness deeper than tears and a profound, stoic resolve to get up, move through and do what needs to be done. It's how I was raised, and nothing less than mom expected of me. I still have to make Christmas for my 7 year old.
Isn't it funny how personal crises show you who your true friends are? People I would have called a casual acquaintance turned up at my door with baking when I put out an SOS, while people I thought I could count on disappeared like smoke. A couple of my friends don't typically bake, but baked for me anyway. And people whose lives mom had no idea she touched came for her funeral and made a point of talking to me after.
My mom's best friend of 70 years is shattered, as my mom would have been if Mary had gone first. Mary's daughter and I were petrified that the other's mom would die first because we knew how it would devastate the one left behind. Just before mom's health plummeted, she had one last, wonderful conversation with her friend on the phone. Mary has had serious health issues lately as well, and the phone calls haven't been as chatty of late. Two hours after the last phone call, mom was on oxygen and four days later, she was gone. I am thankful they had that one last call although it makes things harder.
I prepared the funeral the way mom and I had discussed. I made it through without "making a scene" as mom would have said, although when my cousin read a letter to mom that he had sent her in September, I broke down for a moment. We'd had some significant family rifts in recent years, and up to the morning of the funeral, my husband was under instructions to keep one of my cousins away from me, because I would no longer hold my tongue about how he had treated my mom. And then mom died, and he came to the funeral, and what did it matter now anyway? I even invited him back to the house after, because really, what did it matter now? Mom was still gone and he would have to live with the regret.
For this past year, I have taken care of my mom to the best of my ability. I've fought for her, I've held her hand, I've advocated for her, and I've made a million big and little decisions so that the quality of her life were the best they could be under the horrendous circumstances we found ourselves mired in. I've been judged, I've been challenged and I've been criticized. My health, our family finances and my career have been compromised and my life was not my own. Mom said to me recently that she was sorry she had been a burden, and I told her it had never been a burden, not even once. She was slipping into a coma on the night before she died, but the nurse assured me we were nowhere near the end, so I went home to put my daughter to bed. The last thing I always said to my mom was "I love you, mama, I'll talk to you later". It was the last thing I ever said to my father, and I wanted to make sure that it was what mom heard too. She was more or less unresponsive, but roused enough to say "love you." back. When mom went into the coma, we had said all we had to say.
I lost my mom, my confidante, my sounding board, my friend and my protector. I do not regret or resent one second of the past year, because I was able to give back some of what mom gave me over the years. I can look mom's family, friends, caregivers and most importantly, myself squarely in the eye because I know I did everything I could do to the best of my ability to take care of my mom.
I love you mom. I miss you. Be at peace. I will be okay. I had a good example to follow.
Thursday, October 18, 2012
Monday, October 15, 2012
Cross Post from Lisa Mac's Musings
When mom moved to a nursing home, I was able to go out of town for a day without panic. We went to the CNE for the first time in a few years. Here's what happened when I found my brave and took the Kid on a ride.
Finding my brave at the CNE.
Finding my brave at the CNE.
Saturday, October 13, 2012
Stuff that memories are made of.
I've been AWOL for the last while, because I was frantically trying to deal with the contents of my mother's apartment, which had to be emptied by September 30. Some things were sold. Some things have a new place in my home, and some things were donated. All the remnants of my life with my parents have now been dealt with. I'm not going to lie. It was emotionally draining, and in some cases, heart-breaking. My mom felt terribly guilty for leaving me with the task, which I dealt with by myself. I needed to have time to grieve the loss as I packed up the memories of my parent's life with me.
I knew when I started dismantling mom's apartment that I was only going to be able to keep a few key pieces. I wanted to keep the oak bookcase that I can still picture mom stripping by hand in the garage when I came home from grade school. I wanted to keep the marble-top chest that always held the pumpkin my dad would make at Halloween that had olives for eyes, green pepper eyebrows and a carrot nose. We wanted to use the chest and dresser from my parents' bedroom set because they are solid maple and in better shape than the ones from my husband's parents that we had been using. I wanted to keep some of the artwork, and I wanted to keep the chair that I always sat in at home. Everything else had to go.
Trying to price my mom's furniture needed the wisdom of Solomon. I researched comparable items on sites like Kijiji and priced things accordingly. My mom took scrupulous, meticulous care of her things and they were all solid hardwood and well maintained. I was trying to sell as many of the pieces as I could so I could replenish mom's bank account. I had to drop the price a few times to sell the couch, the kitchen table and chairs, the twin beds, the coffee table and the bedside tables.
A little piece of my life with my parents died with every piece of mom's that I sold. The couch went to a lovely young couple, newly immigrated from India and building a new life in Canada. I wished them a happy life. I wanted to tell them that my dad used to snooze on the couch, just so. Mom spent many hours there in the past few months. And that spot, right there, that's where my cousin Murray sat the last time he was here. The couch had seen a lot of happy family memories and now it's gone off to help a new family make new ones. The kitchen table and chairs went to a young couple who had just moved here from Ottawa. That spot there, with the faint cigarette burn that mom couldn't quite remove when she refinished the table-that's where my dad used to sit and do his crossword puzzle. We had lots of discussions about politics around that table.
I ended up donating several pieces to the Salvation Army. I was raised to give what I was able to give to those with even less, and I knew that mom would approve. Still, some of the pieces that were donated broke my heart. There was the wicker loveseat that always sat in my bedroom when I was a child and held all my stuffed animals. There was the funny wicker standing magazine rack that held the newspapers and magazines. And there was the old cricket set-the love seat and matching little rocking chair where I sat day after day in recent months. When we drove away after leaving the little rocker, I burst into tears. I simply didn't have space for it, but alot of memories were tied to that little upholstered chair.
It wasn't all horrible. I discovered my father had kept every card I had sent him for his birthday or Father's Day. My dad was not sentimental. My mom, who threw out papers with abandon, had kept all the birthday, Christmas and Mother's Day cards she had received, both from me and from her mother. I found a letter my grandmother wrote to my mother on Mother's Day about how she hoped I would be as good a mother as my mom is. I'm trying Grandma, I'm trying. And then there was the letter. While sorting through a box of my old children's books that I almost donated without checking, I found a letter from my dad from Father's Day 1973 when he was fundraising in Halifax to build Dalhousie University. He told me in writing that he was proud of me and loved me. Those words were rare as I got older. Were it not for an old box of children's books that I nearly donated without sorting, I would have never found the letter. I certainly don't remember it. It was probably meaningless to a 10 year old girl. To a 49 year old, it's precious.
The china, the crystal and the artwork came home and are in transition to new places in our home. I emptied as many boxes as I could in the week between the closing date for the apartment and hosting Thanksgiving at our house. My mom was eager to see where all her things had been placed in our house, so we had to have the main things in place. Mom was able to see where some things were, and the rest will be done by Christmas. We used the china at Thanksgiving my dad had purchased for me when I was a teenager. Because I had always left the china at mom's, mom decided I didn't like it and was always instructing me to get rid of it. I don't think we'd used it since just after mom moved to the apartment, so it had been 20 years or more since it had seen the light of day. It's much prettier than I remember.
As a wise friend said to me, at the end of the day, it's just furniture. The pieces I've kept have special meaning and are already being used in our home. The pieces that were sold or otherwise disposed of are now being used in new homes by new people. May they carry with them love, friendship, good conversation, warm hugs and laughter. I've got pictures and memories. The rest is just stuff.
I knew when I started dismantling mom's apartment that I was only going to be able to keep a few key pieces. I wanted to keep the oak bookcase that I can still picture mom stripping by hand in the garage when I came home from grade school. I wanted to keep the marble-top chest that always held the pumpkin my dad would make at Halloween that had olives for eyes, green pepper eyebrows and a carrot nose. We wanted to use the chest and dresser from my parents' bedroom set because they are solid maple and in better shape than the ones from my husband's parents that we had been using. I wanted to keep some of the artwork, and I wanted to keep the chair that I always sat in at home. Everything else had to go.
Trying to price my mom's furniture needed the wisdom of Solomon. I researched comparable items on sites like Kijiji and priced things accordingly. My mom took scrupulous, meticulous care of her things and they were all solid hardwood and well maintained. I was trying to sell as many of the pieces as I could so I could replenish mom's bank account. I had to drop the price a few times to sell the couch, the kitchen table and chairs, the twin beds, the coffee table and the bedside tables.
A little piece of my life with my parents died with every piece of mom's that I sold. The couch went to a lovely young couple, newly immigrated from India and building a new life in Canada. I wished them a happy life. I wanted to tell them that my dad used to snooze on the couch, just so. Mom spent many hours there in the past few months. And that spot, right there, that's where my cousin Murray sat the last time he was here. The couch had seen a lot of happy family memories and now it's gone off to help a new family make new ones. The kitchen table and chairs went to a young couple who had just moved here from Ottawa. That spot there, with the faint cigarette burn that mom couldn't quite remove when she refinished the table-that's where my dad used to sit and do his crossword puzzle. We had lots of discussions about politics around that table.
I ended up donating several pieces to the Salvation Army. I was raised to give what I was able to give to those with even less, and I knew that mom would approve. Still, some of the pieces that were donated broke my heart. There was the wicker loveseat that always sat in my bedroom when I was a child and held all my stuffed animals. There was the funny wicker standing magazine rack that held the newspapers and magazines. And there was the old cricket set-the love seat and matching little rocking chair where I sat day after day in recent months. When we drove away after leaving the little rocker, I burst into tears. I simply didn't have space for it, but alot of memories were tied to that little upholstered chair.
It wasn't all horrible. I discovered my father had kept every card I had sent him for his birthday or Father's Day. My dad was not sentimental. My mom, who threw out papers with abandon, had kept all the birthday, Christmas and Mother's Day cards she had received, both from me and from her mother. I found a letter my grandmother wrote to my mother on Mother's Day about how she hoped I would be as good a mother as my mom is. I'm trying Grandma, I'm trying. And then there was the letter. While sorting through a box of my old children's books that I almost donated without checking, I found a letter from my dad from Father's Day 1973 when he was fundraising in Halifax to build Dalhousie University. He told me in writing that he was proud of me and loved me. Those words were rare as I got older. Were it not for an old box of children's books that I nearly donated without sorting, I would have never found the letter. I certainly don't remember it. It was probably meaningless to a 10 year old girl. To a 49 year old, it's precious.
The china, the crystal and the artwork came home and are in transition to new places in our home. I emptied as many boxes as I could in the week between the closing date for the apartment and hosting Thanksgiving at our house. My mom was eager to see where all her things had been placed in our house, so we had to have the main things in place. Mom was able to see where some things were, and the rest will be done by Christmas. We used the china at Thanksgiving my dad had purchased for me when I was a teenager. Because I had always left the china at mom's, mom decided I didn't like it and was always instructing me to get rid of it. I don't think we'd used it since just after mom moved to the apartment, so it had been 20 years or more since it had seen the light of day. It's much prettier than I remember.
As a wise friend said to me, at the end of the day, it's just furniture. The pieces I've kept have special meaning and are already being used in our home. The pieces that were sold or otherwise disposed of are now being used in new homes by new people. May they carry with them love, friendship, good conversation, warm hugs and laughter. I've got pictures and memories. The rest is just stuff.
Thursday, August 2, 2012
Numb
I can't think of a more appropriate title for this blog post than numb. It's how I'm feeling right now.
Almost three weeks ago, my mom moved to a nursing home. We were notified on Tuesday morning, and she was originally expected to move in on Thursday. I delayed until Saturday morning. I thought it would give her a couple more days in her own home, but in retrospect, moving in on the weekend was a bad idea. None of the regular intake workers are there on the weekend, and it was fly by night and make do until Monday.
It's been a tough transition. The night before mom moved, she suffered a mini-stroke rather than the TIAs we've been dealing with. It robbed her of her ability to communicate. She knew what she wanted to say, but couldn't get the words out to say it. My mom is not a chatty person on a good day, so this added an extra layer of stress to her worst nightmare. For her first couple of days in the new environment she was unable to communicate her needs. The staff then made a bunch of assumptions based on what they thought the knew about mom, and caused them to treat her like an addle-brained 3 year old. Why is it that some care givers talk to seniors like they are 2 years old and not the brightest child in the playground? For example, my mom's roomate is immobile, and we were told, doesn't communicate much. I heard her talking to her husband one evening and she could communicate more than she was letting on. I also noticed that the staff called her by one name and her husband called her a different name. I had lunch with her and mom one day, and I asked her what name she preferred. Turns out she wants to be called by what her husband calls her, but I don't think anyone bothered to ask her.
As the after-effects of the mini-stroke diminished, mom regained her power of speech. She's waging a bit of a battle of wills with some of the staff and it's vintage Myrna. Because of the inoperable skin cancer lesions, her forehead must be bandaged. It's an open wound on a nerve and dressing changes are not a picnic in the park. The home care nurses had learned the tricks, but the nurses at the home are still learning. Mom made me stop at a pharmacy on the day she learned we couldn't keep her family doctor, and she bought her own supplies and did it herself. I gave the staff a heads-up but told them to let her keep them. It gives her a tiny measure of control in a world that she's lost control in.
I thought she would be safe from falls, yet she's had 2 since she's been there. One they knew about, one she didn't tell them about. She's now in severe pain, and my mom is not one to complain about pain. She avoids taking pain pills if she can help it, and if she's asking for meds, there's a problem. We had to transfer to the nursing home doctor, and he doesn't know mom from a hole in the wall. I think she's hurt something, and I will keep bugging them until something is done. Get used to this face, people.
I now have to start dismantling the apartment. My mom gave my aunt my favorite pieces, an old easel and needlework picture stitched by my grandmother, and a washstand that always stood in our front hall. I can still picture my dad's hat on the corner. I was hurt and angry when mom gave the pieces away, but in the end, I still have the memories and it's just furniture. I'm starting to make a plan for the rest of the contents, but I'm starting with things that have no emotional attachment, like sheets and towels. I have 2 months to get the job done, and it's an emotional grind every time I go over. For 22 years, mom's apartment has been my safe place, and it's hard to see it go. A wise friend of mine told me to approach as one would approach eating an elephant-one bite at a time.
My daughter has taken the transition well. There's a candy machine and a shuffleboard in the lobby, and a large lawn to practice handstands and somersaults while we sit in the shade under the trees. "There's more to do at Grandma's new home," she said and comes to visit more readily than she did at the apartment. That's made things easier for me.
This has been a nightmare journey. Mom went from being self-sufficient with a bit of help, to a nursing home crisis placement in less than 7 months. I am mentally, physically and emotionally exhausted. I still go to see mom, but I've been able to skip a day here and there without panicking that she's fallen, or not eaten. On the days I don't go we talk 3-4 times on the phone. There are still many things I have to accomplish, many tasks to do, but at least I know mom is safe and isn't lying in the hall somewhere unable to tell me she's hurt. I had to make my mom's worst nightmare happen, and it's taken a toll. It was the right thing to do. It was the necessary thing to do, and signing the papers and leaving my mom there the first time was one of the hardest things I've ever done in my life. We're adjusting, but there are still tough days.
At the end of the day, I need to be able to look mom in the eye, and face myself in the mirror and know I did the best that I could for my mom. I can do that. The vision might be blurry with tears, but I know I'm taking care of my mom the best I can.
Almost three weeks ago, my mom moved to a nursing home. We were notified on Tuesday morning, and she was originally expected to move in on Thursday. I delayed until Saturday morning. I thought it would give her a couple more days in her own home, but in retrospect, moving in on the weekend was a bad idea. None of the regular intake workers are there on the weekend, and it was fly by night and make do until Monday.
It's been a tough transition. The night before mom moved, she suffered a mini-stroke rather than the TIAs we've been dealing with. It robbed her of her ability to communicate. She knew what she wanted to say, but couldn't get the words out to say it. My mom is not a chatty person on a good day, so this added an extra layer of stress to her worst nightmare. For her first couple of days in the new environment she was unable to communicate her needs. The staff then made a bunch of assumptions based on what they thought the knew about mom, and caused them to treat her like an addle-brained 3 year old. Why is it that some care givers talk to seniors like they are 2 years old and not the brightest child in the playground? For example, my mom's roomate is immobile, and we were told, doesn't communicate much. I heard her talking to her husband one evening and she could communicate more than she was letting on. I also noticed that the staff called her by one name and her husband called her a different name. I had lunch with her and mom one day, and I asked her what name she preferred. Turns out she wants to be called by what her husband calls her, but I don't think anyone bothered to ask her.
As the after-effects of the mini-stroke diminished, mom regained her power of speech. She's waging a bit of a battle of wills with some of the staff and it's vintage Myrna. Because of the inoperable skin cancer lesions, her forehead must be bandaged. It's an open wound on a nerve and dressing changes are not a picnic in the park. The home care nurses had learned the tricks, but the nurses at the home are still learning. Mom made me stop at a pharmacy on the day she learned we couldn't keep her family doctor, and she bought her own supplies and did it herself. I gave the staff a heads-up but told them to let her keep them. It gives her a tiny measure of control in a world that she's lost control in.
I thought she would be safe from falls, yet she's had 2 since she's been there. One they knew about, one she didn't tell them about. She's now in severe pain, and my mom is not one to complain about pain. She avoids taking pain pills if she can help it, and if she's asking for meds, there's a problem. We had to transfer to the nursing home doctor, and he doesn't know mom from a hole in the wall. I think she's hurt something, and I will keep bugging them until something is done. Get used to this face, people.
I now have to start dismantling the apartment. My mom gave my aunt my favorite pieces, an old easel and needlework picture stitched by my grandmother, and a washstand that always stood in our front hall. I can still picture my dad's hat on the corner. I was hurt and angry when mom gave the pieces away, but in the end, I still have the memories and it's just furniture. I'm starting to make a plan for the rest of the contents, but I'm starting with things that have no emotional attachment, like sheets and towels. I have 2 months to get the job done, and it's an emotional grind every time I go over. For 22 years, mom's apartment has been my safe place, and it's hard to see it go. A wise friend of mine told me to approach as one would approach eating an elephant-one bite at a time.
My daughter has taken the transition well. There's a candy machine and a shuffleboard in the lobby, and a large lawn to practice handstands and somersaults while we sit in the shade under the trees. "There's more to do at Grandma's new home," she said and comes to visit more readily than she did at the apartment. That's made things easier for me.
This has been a nightmare journey. Mom went from being self-sufficient with a bit of help, to a nursing home crisis placement in less than 7 months. I am mentally, physically and emotionally exhausted. I still go to see mom, but I've been able to skip a day here and there without panicking that she's fallen, or not eaten. On the days I don't go we talk 3-4 times on the phone. There are still many things I have to accomplish, many tasks to do, but at least I know mom is safe and isn't lying in the hall somewhere unable to tell me she's hurt. I had to make my mom's worst nightmare happen, and it's taken a toll. It was the right thing to do. It was the necessary thing to do, and signing the papers and leaving my mom there the first time was one of the hardest things I've ever done in my life. We're adjusting, but there are still tough days.
At the end of the day, I need to be able to look mom in the eye, and face myself in the mirror and know I did the best that I could for my mom. I can do that. The vision might be blurry with tears, but I know I'm taking care of my mom the best I can.
Thursday, July 5, 2012
"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.
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.
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