Blown Glass
Life is so fragile.
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The Delayed Reaction.
Now that it has had time to sink in and I've had plenty of opportunity to process my thoughts... I think I'm ready to talk about dementia and what it means for my family.
6,269 miles apart, my grandma and I manage to talk on the phone daily. She is my wisest and closest friend. She is also my mother's sole caregiver. The impact of my mom's condition is undoubtedly the most devastating for my grandma.
My mom raised my brother and me alone. That is to say, she raised us without assistance from our fathers - not to say that she raised us without assistance. My grandma has always been in my life, most times in a closer manner than my mother herself. Not that my mom and I weren't close. We were. I was just incredibly fortunate and had two really strong, wonderful women in my life. My grandma is the greatest woman I know, and my mom was smart and strong and independent. Out of two lousy relationships with a child from each and debt to her eyebrows, she pressed on, working hard and doing the best she could, making sure my brother and I were never aware when we went without. She fought her way out of debt and became really one of the most financially stable people I know, but even when she was a slave to her credit card bills, she did things to delight my brother and me. I remember one year she got a tax refund and gave my brother and me $100 each, took us to Toys "R" Us, and let us each push our own shopping cart. She did things like that for us as often as she could. In a really hard time, she once sold our washer and dryer to pay the bills, but I'd never have realized it if she hadn't told me as an adult.
She was my rock. Looking back I am infinitely grateful that I had her as long as I did and that I made some of the choices I did. In junior high, she gave me an option to save the contents of my savings account for my 16th birthday for a nice car, or to take a vacation to the east coast. Of course, not really caring about my 16th birthday so far in advance, I chose the vacation. We had a blast. We went to Boston, New York City, and Washington, D.C. for 10 days. We walked the freedom trail and shopped Filene's Basement in Boston, saw Ellis Island and a Broadway show in New York, and took tours of the monuments and historical places in Washington, D.C. It was incredible and I loved every minute of it. Another tax refund one year, she spent on a two week vacation to a place called Pajaro Dunes on the central coast of California. We rented a vacation home and the whole family enjoyed a blissfully relaxing stay there. She bought us annual passes to Disneyland and frequently we would drive there for an impromptu weekend. She always supported me and my decisions. She came with Mark and me to Las Vegas for Marine Corps Balls, she shuttled me (and Mark) to and from Camp Pendleton, and she included us in everything.
Despite spending my "car savings" on a trip, she bought me my first car, and helped me track down the car of my dreams. She took me up to Roseville, California and drove home my brand new shiny red 1972 Volkswagen Karmann Ghia with me laughing in the passenger seat all the way.
She let me transfer to a home studies program to finish high school early and then supported my college education (which I definitely took for granted). She let me move out when I was 17, she helped me to fill my very first apartment with cozy things.
She paid almost entirely for my wedding, and when I moved away to southern California to be with Mark, I can't tell you how many times we overdrew our checking account and I'd call her crying and ashamed and disappointed in my own mistakes. She always promptly went to the bank and deposited money into our account, without a second thought. My cat got sick and I was distraught, she gave me her credit card to cover Miss Kitty's emergency surgery and pet hospital stay.
Though the most recent of these things were only about four years ago, I have grown up a lot in that time. I have come to terms with reality, especially as far as finances go. Not to say that I no longer make mistakes by any means. But when I do make mistakes, nobody "bails me out". I am fortunate to have my grandma to discuss my errors with, but beyond that I pretty much have come to the realization that things always have a way of working themselves out, eventually. Recently I've been better about things, but there have definitely been rough patches.
So many times during my mother's decline, I have found myself MAD at her. I realize now, with great guilt, my anger was misdirected. But I genuinely thought she was letting something get to her. We went through the motions. She had started being less social. Complaining of back pain, then migraines. Slacking off about work. Eventually she got laid off, then spent all of her time in bed. It was like she was sulking. Depressed? Empty nest syndrome? Anxiety? Something physical - maybe her Fibromyalgia? Menopause? Chemical imbalance?
Her behavior was erratic. She was not herself at all. It was frustrating. I would go into her room while we were visiting, throw open her curtains and let the sunlight in. She'd wince on her bed and throw something over her eyes to block the light out. I'd sit on the side of her bed and bounce up and down and talk loudly. Something, ANYTHING, to get a reaction. Nothing. She wouldn't cry, she wouldn't yell at me, she wouldn't hit me, nothing. It was incredibly frustrating. I remember telling her, "Mom, there is something REALLY wrong with you. Don't let it win, you have to fight! You're stronger than this! Where ARE you??" She just stared at me blankly, not really offering much of a response. She was waiting for me to leave the room so she could go back to sleep. She just stopped caring. It was like talking to a wall.
My mom, with her long-standing great financial habits, suddenly was ignoring credit card bills, letting them literally stack up month after month on her bed. She cashed out her retirement money and blew it all. She was forgetting things like crazy. Several times last year she had to be reminded what Cadence's name was and that Mark had deployed to Afghanistan.
One day over the phone while we were talking about her memory loss and unexplainable behavior, I said to my grandma, "It's like she has Alzheimer's Disease." I wish I'd never said it. Not that she actually HAS Alzheimer's now, but she's got undefined dementia, which is something like it. It's not really the sort of thing you want to be right about.
Her lack of health insurance and the battle that my grandma fought for her to start receiving disability benefits meant it took nearly four years for this diagnosis. She's been showing signs of something being the matter since 2004, when her physical pain started. In my mind I can see brain cells just being destroyed without reason for the past six years while we all felt so bitter towards her. So many times I yelled at her. So many times I was ANGRY with her for being the way she was. So many times I said to her "I miss you too, mom," and thought to myself that she'd never understand how I missed her. And she won't.
At least one family member that I know of went so far as to say that my mom was "faking it." I can't imagine anybody faking something so devastating and carrying on such a charade for so long. I secretly hope that family member feels shame for implying such a thing, but I know that people as selfish as that could never fully understand anything like this.
There are two things that I consider the worst parts of it all:
6,269 miles apart, my grandma and I manage to talk on the phone daily. She is my wisest and closest friend. She is also my mother's sole caregiver. The impact of my mom's condition is undoubtedly the most devastating for my grandma.
My mom raised my brother and me alone. That is to say, she raised us without assistance from our fathers - not to say that she raised us without assistance. My grandma has always been in my life, most times in a closer manner than my mother herself. Not that my mom and I weren't close. We were. I was just incredibly fortunate and had two really strong, wonderful women in my life. My grandma is the greatest woman I know, and my mom was smart and strong and independent. Out of two lousy relationships with a child from each and debt to her eyebrows, she pressed on, working hard and doing the best she could, making sure my brother and I were never aware when we went without. She fought her way out of debt and became really one of the most financially stable people I know, but even when she was a slave to her credit card bills, she did things to delight my brother and me. I remember one year she got a tax refund and gave my brother and me $100 each, took us to Toys "R" Us, and let us each push our own shopping cart. She did things like that for us as often as she could. In a really hard time, she once sold our washer and dryer to pay the bills, but I'd never have realized it if she hadn't told me as an adult.
She was my rock. Looking back I am infinitely grateful that I had her as long as I did and that I made some of the choices I did. In junior high, she gave me an option to save the contents of my savings account for my 16th birthday for a nice car, or to take a vacation to the east coast. Of course, not really caring about my 16th birthday so far in advance, I chose the vacation. We had a blast. We went to Boston, New York City, and Washington, D.C. for 10 days. We walked the freedom trail and shopped Filene's Basement in Boston, saw Ellis Island and a Broadway show in New York, and took tours of the monuments and historical places in Washington, D.C. It was incredible and I loved every minute of it. Another tax refund one year, she spent on a two week vacation to a place called Pajaro Dunes on the central coast of California. We rented a vacation home and the whole family enjoyed a blissfully relaxing stay there. She bought us annual passes to Disneyland and frequently we would drive there for an impromptu weekend. She always supported me and my decisions. She came with Mark and me to Las Vegas for Marine Corps Balls, she shuttled me (and Mark) to and from Camp Pendleton, and she included us in everything.
Despite spending my "car savings" on a trip, she bought me my first car, and helped me track down the car of my dreams. She took me up to Roseville, California and drove home my brand new shiny red 1972 Volkswagen Karmann Ghia with me laughing in the passenger seat all the way.
She let me transfer to a home studies program to finish high school early and then supported my college education (which I definitely took for granted). She let me move out when I was 17, she helped me to fill my very first apartment with cozy things.
She paid almost entirely for my wedding, and when I moved away to southern California to be with Mark, I can't tell you how many times we overdrew our checking account and I'd call her crying and ashamed and disappointed in my own mistakes. She always promptly went to the bank and deposited money into our account, without a second thought. My cat got sick and I was distraught, she gave me her credit card to cover Miss Kitty's emergency surgery and pet hospital stay.
Though the most recent of these things were only about four years ago, I have grown up a lot in that time. I have come to terms with reality, especially as far as finances go. Not to say that I no longer make mistakes by any means. But when I do make mistakes, nobody "bails me out". I am fortunate to have my grandma to discuss my errors with, but beyond that I pretty much have come to the realization that things always have a way of working themselves out, eventually. Recently I've been better about things, but there have definitely been rough patches.
So many times during my mother's decline, I have found myself MAD at her. I realize now, with great guilt, my anger was misdirected. But I genuinely thought she was letting something get to her. We went through the motions. She had started being less social. Complaining of back pain, then migraines. Slacking off about work. Eventually she got laid off, then spent all of her time in bed. It was like she was sulking. Depressed? Empty nest syndrome? Anxiety? Something physical - maybe her Fibromyalgia? Menopause? Chemical imbalance?
Her behavior was erratic. She was not herself at all. It was frustrating. I would go into her room while we were visiting, throw open her curtains and let the sunlight in. She'd wince on her bed and throw something over her eyes to block the light out. I'd sit on the side of her bed and bounce up and down and talk loudly. Something, ANYTHING, to get a reaction. Nothing. She wouldn't cry, she wouldn't yell at me, she wouldn't hit me, nothing. It was incredibly frustrating. I remember telling her, "Mom, there is something REALLY wrong with you. Don't let it win, you have to fight! You're stronger than this! Where ARE you??" She just stared at me blankly, not really offering much of a response. She was waiting for me to leave the room so she could go back to sleep. She just stopped caring. It was like talking to a wall.
My mom, with her long-standing great financial habits, suddenly was ignoring credit card bills, letting them literally stack up month after month on her bed. She cashed out her retirement money and blew it all. She was forgetting things like crazy. Several times last year she had to be reminded what Cadence's name was and that Mark had deployed to Afghanistan.
One day over the phone while we were talking about her memory loss and unexplainable behavior, I said to my grandma, "It's like she has Alzheimer's Disease." I wish I'd never said it. Not that she actually HAS Alzheimer's now, but she's got undefined dementia, which is something like it. It's not really the sort of thing you want to be right about.
Her lack of health insurance and the battle that my grandma fought for her to start receiving disability benefits meant it took nearly four years for this diagnosis. She's been showing signs of something being the matter since 2004, when her physical pain started. In my mind I can see brain cells just being destroyed without reason for the past six years while we all felt so bitter towards her. So many times I yelled at her. So many times I was ANGRY with her for being the way she was. So many times I said to her "I miss you too, mom," and thought to myself that she'd never understand how I missed her. And she won't.
At least one family member that I know of went so far as to say that my mom was "faking it." I can't imagine anybody faking something so devastating and carrying on such a charade for so long. I secretly hope that family member feels shame for implying such a thing, but I know that people as selfish as that could never fully understand anything like this.
There are two things that I consider the worst parts of it all:
- My mom didn't deserve this. Not that ANYBODY "deserves" it, but I can think of so many people who lived their lives recklessly and made horrible decisions. Drugs, excessive alcohol, smoking, promiscuity, etc... And they're fine. Still alive and kicking and making as stupid decisions as ever. My mom lived her life healthily. She made good decisions, she took care of herself and her children, she didn't break laws, she was honest... Why her? And I don't want some ridiculous religious reason, either. I want to know WHY her. How is that fair? Why bother to live your life a certain way if the outcome of your health is just a roulette wheel?
- I will never get my mom back. There are medications available to ATTEMPT to SLOW the progress of her dementia down, but no real treatment. The strong, wonderful woman I used to look up to has been reduced to an adult with the behavior habits of a three-year-old and it will never get any better. Only worse.
Furthermore, the diagnosis of "dementia" itself is incredibly vague, I think, and I'm disappointed. Dementia is a symptom. One we already were aware of. By her neurologist saying, "She has dementia," all we really know now is that it's not something repairable. Tell me what disease she has, though. That's what I want to know. Alzheimer's? Pick's? Lewy Bodies? Parkinson's? Frontotemporal? Frontal Lobar Degeneration? WHAT the hell is causing this?
No such luck. You're on your own. Not even so much as a speculation regarding the potential heredity of her condition, and so I'll spend every moment that I can't remember where I left my keys, or what I had for lunch yesterday wondering if one day I'll be in the same situation she is in now, a burden on my family, completely oblivious to what my life has become.
My grandma is working on giving up her cats and getting things in order so that she can possibly move out of their giant house and into a smaller, more reasonable apartment. My mom's reaction to her diagnosis? "What's for lunch?"
One Year
A year ago tonight, I was laboring intensely and quickly in preparation for the birth of my Cadence.
At 8:27, while watching House DVDs, and after having timed 5 contractions... My water broke. I was shaking and completely nervous, but I tried to stay calm. I got myself cleaned up, got my hospital bags ready, and then went back to watching House while I cuddled with Mark and Amaris. It was a nice, peaceful time, but a little after 10 I decided it was time to go. Mark and I left Amaris with the neighbors and headed off to the hospital. I don't remember much of the ride there except looking up just in time to see Mark stop at a yellow light - come on, seriously! Yellow lights in Japan mean "Go for it!" There is a two-second rule here, which basically says that once the light turns red, you've got two seconds to get through the intersection. Everybody knows that. :)
I had my eyes closed almost the entire way there, and when we arrived at the hospital, a Navy Corpsman was waiting for me with a wheelchair in the lobby. Mark parked the car and we all rode up in the elevator together. I can't say I was very chatty.
The nurses kept me in triage for what felt like an eternity, but finally they confirmed that I definitely was in labor (not like I could fake it), and admitted me to a labor and delivery room. Being the only delivering mother at the time meant I had first pick of the available rooms, and naturally I took their most posh "suite". (Mind you, this is a Naval Hospital. "Posh" pretty much means I had my own bathroom.)
While waiting for an Obstetrician to check me, I was poked about a thousand times by the staff nurses trying to insert my IV catheter. It took them forever, and it was a huge battle because during my intense contractions, I involuntarily curled up into a tight, sideways ball in my bed, gripping the siderails till my knuckles were white. Finally they got it in and I made several trips to the bathroom to relieve my bladder. Eventually the OB made his way in and attempted to check my cervix. That was undoubtedly the most painful pelvic exam of my life. After about two minutes of him trying to gauge my progress, I involuntarily kicked the poor guy away and told him he had to stop. Unable to determine my actual status, he made up my numbers to the nurses - "I'd say about.. uh, 75% effaced... 3-4 cm dilated... and the baby's at about a... 0." - and asked them to have the Anesthesiologist come up to administer my much anticipated epidural so that he could check me again.
I made another trip to the bathroom against the advice of the nurses, poor Mark had to help me to and from the bathroom all those times. I could feel an immense pressure and I was sure it was Cadence's head. I was careful not to push - I certainly didn't want to deliver her on the toilet.
After what felt like an eternity of waiting, an Anesthesiologist came in and started rambling on to me about the procedure. He kept taking big pauses in his speech so that I'd acknowledge hearing and understanding what he was saying. What I wanted to say was, "I've done this before, can you PLEASE just give me the drugs!" But my body was too tight to make that sort of complete sentence.
All at once, I felt something happening, and I interrupted the Anesthesiologist. I said, "I can feel her head." He looked at me like I was insane, and then kept talking. I said, "SOMETHING IS COMING OUT OF ME." He stopped talking again, and a nurse ran over. She threw back my sheets just in time to see Cadence and yelled, "Oh!! BABY! BABY!" Every staff member on the labor and delivery floor ran into my room, the OB being the last one through the door, throwing on his lab coat as he crossed the thresh hold. Cadence was already here - having arrived promptly at 1:01AM on February 3 - laying beside my legs on the bed. Purple-skinned and squirmy, but quiet. She's always been sort of peaceful like that.
Despite my best efforts to keep her in long enough to enjoy that epidural, Cadence had other plans. I delivered her quickly and aside from the pain, rather effortlessly. I didn't push, I didn't struggle through my labor for hours on end the way that I did with Amaris. Cadence was born easygoing and has continued to be that way, for the most part, throughout this first year of her life.
Looking back, I am sentimental, of course. The year, as all mothers say on their child's first birthday, has flown by. I barely recognize the sleepy-eyed newborn in the photos we took following her birth, but my heart swells with pride and love all the same. She is an active, personality-filled, bouncing, beautiful, sweet girl now. Soft brown head of hair, long eyelashes, chubby cheeks, button nose, deep, expressive eyes, and absolutely CRAZY about her big sister... She's wonderful.
And now, she's one.
At 8:27, while watching House DVDs, and after having timed 5 contractions... My water broke. I was shaking and completely nervous, but I tried to stay calm. I got myself cleaned up, got my hospital bags ready, and then went back to watching House while I cuddled with Mark and Amaris. It was a nice, peaceful time, but a little after 10 I decided it was time to go. Mark and I left Amaris with the neighbors and headed off to the hospital. I don't remember much of the ride there except looking up just in time to see Mark stop at a yellow light - come on, seriously! Yellow lights in Japan mean "Go for it!" There is a two-second rule here, which basically says that once the light turns red, you've got two seconds to get through the intersection. Everybody knows that. :)
I had my eyes closed almost the entire way there, and when we arrived at the hospital, a Navy Corpsman was waiting for me with a wheelchair in the lobby. Mark parked the car and we all rode up in the elevator together. I can't say I was very chatty.
The nurses kept me in triage for what felt like an eternity, but finally they confirmed that I definitely was in labor (not like I could fake it), and admitted me to a labor and delivery room. Being the only delivering mother at the time meant I had first pick of the available rooms, and naturally I took their most posh "suite". (Mind you, this is a Naval Hospital. "Posh" pretty much means I had my own bathroom.)
While waiting for an Obstetrician to check me, I was poked about a thousand times by the staff nurses trying to insert my IV catheter. It took them forever, and it was a huge battle because during my intense contractions, I involuntarily curled up into a tight, sideways ball in my bed, gripping the siderails till my knuckles were white. Finally they got it in and I made several trips to the bathroom to relieve my bladder. Eventually the OB made his way in and attempted to check my cervix. That was undoubtedly the most painful pelvic exam of my life. After about two minutes of him trying to gauge my progress, I involuntarily kicked the poor guy away and told him he had to stop. Unable to determine my actual status, he made up my numbers to the nurses - "I'd say about.. uh, 75% effaced... 3-4 cm dilated... and the baby's at about a... 0." - and asked them to have the Anesthesiologist come up to administer my much anticipated epidural so that he could check me again.
I made another trip to the bathroom against the advice of the nurses, poor Mark had to help me to and from the bathroom all those times. I could feel an immense pressure and I was sure it was Cadence's head. I was careful not to push - I certainly didn't want to deliver her on the toilet.
After what felt like an eternity of waiting, an Anesthesiologist came in and started rambling on to me about the procedure. He kept taking big pauses in his speech so that I'd acknowledge hearing and understanding what he was saying. What I wanted to say was, "I've done this before, can you PLEASE just give me the drugs!" But my body was too tight to make that sort of complete sentence.
All at once, I felt something happening, and I interrupted the Anesthesiologist. I said, "I can feel her head." He looked at me like I was insane, and then kept talking. I said, "SOMETHING IS COMING OUT OF ME." He stopped talking again, and a nurse ran over. She threw back my sheets just in time to see Cadence and yelled, "Oh!! BABY! BABY!" Every staff member on the labor and delivery floor ran into my room, the OB being the last one through the door, throwing on his lab coat as he crossed the thresh hold. Cadence was already here - having arrived promptly at 1:01AM on February 3 - laying beside my legs on the bed. Purple-skinned and squirmy, but quiet. She's always been sort of peaceful like that.
Despite my best efforts to keep her in long enough to enjoy that epidural, Cadence had other plans. I delivered her quickly and aside from the pain, rather effortlessly. I didn't push, I didn't struggle through my labor for hours on end the way that I did with Amaris. Cadence was born easygoing and has continued to be that way, for the most part, throughout this first year of her life.
Looking back, I am sentimental, of course. The year, as all mothers say on their child's first birthday, has flown by. I barely recognize the sleepy-eyed newborn in the photos we took following her birth, but my heart swells with pride and love all the same. She is an active, personality-filled, bouncing, beautiful, sweet girl now. Soft brown head of hair, long eyelashes, chubby cheeks, button nose, deep, expressive eyes, and absolutely CRAZY about her big sister... She's wonderful.
And now, she's one.
Happy birthday to my sugarpie.
