When I was a child, my mommy could kiss any boo-boo and make it better. My mom was always a loving, compassionate mom. I remember the days when I would have to stay home from school sick; as much as I hated being sick and missing my friends at school, I secretly enjoyed the special attention I got from mom. She would lay out my pillow and blankie on the couch, turning on my favorite movies and make me hot jello broth to drink. She waited on me hand and foot, making sure to soothe any pain I had. When I had fevers, she would nurse me with a wet washcloth while I laid my head in her lap as she stroked my hair or scratched my back.
When I was nine years old, I was hospitalized for asthma. My mom was taking college courses at the time, and the college was across the street from the hospital. In those three days that I spent in the hospital, she only left my side once to go to a class and turn in her work and get her other assignments. She made sure though, that somebody was there with me while she was gone. She slept on a cot in my room at night. I can't imagine more devotion from a mother for her sick child.
The first time I was sick without my mom was when I went away to college. I had gotten a stomach bug and spent all night throwing up. My sweet roommate, at the time, did her best to nurse me back to health. But it wasn't the same as having my mom by my side. She tried to comfort me over the phone, but I longed to have her there with me; I knew she would know just how to take care of me.
I was the last of my friends to get married and start having babies. As I watched each friend in the aftermath of their deliveries, I noticed that they all had their mothers there to stay with them for a while to help them adjust to their new roles as mothers. I had no doubt that it would be the same for me, when my time would come that I would start my family.
My first pregnancy came approximately 7 years ago. I was SO sick. For the first week of my morning sickness, I could hardly get out of my bed. Even though my mom worked as a Head Start teacher in the afternoons, she would come over in the mornings to take care of me. I remember her making me toast and bringing gatorade in hopes to keep me hydrated. When my husband, Jeff, went out of town on a business trip, mom packed me up and had me come stay at her house so she could make sure I was taken care of. When it was time for delivery, mom was thrilled to be there for the birth of her first granddaughter, my baby girl, Aubrey. In the weeks afterwards, though she couldn't stay the night with me (due to her job), she was there nearly everyday to help me adjust to motherhood and make sure I got the nutrition I needed for breastfeeding. I felt very fortunate to have my mom with me; although at the time I didn't realize just how lucky I was.
Three years later, I found myself pregnant with my second child. That pregnancy was worse than the first. By this time, my mom's disease had begun (though we didn't know this at the time). She was tired and achey all of the time, which she blamed on her heart condition, and really only thought about herself and her own aches and pains. Indeed, she had become somewhat self-centered. She would come by to help me only if I was completely desperate and had no other choice. When I was about four months pregnant, and barely getting over my morning sickness, our house sold. I had one week to pack up the contents of our entire house, with Christmas right in the middle of that week. Jeff had no time off work to help me, as he had just started a new job the week prior. I expected that my mom would be there to help me pack all of our belongings. But she was too tired and it was her Christmas break; she wanted time to rest. In between the nausea and sickness, I did my best to pack up our home-mostly by myself. Lucky for me, there were 3 dear friends from church who came over and helped me pack up my kitchen.
"Where is your mom?" I remember one friend asking. I was embarassed to confess that she was at home, resting. She should have been there for me.
On moving day, we had those same friends, along with my dad, come help us move everything, despite my inability to finish packing. By that point, things were just thrown into boxes and moved onto the truck.
That following May, my doctor had set up my induction date for the delivery of our baby boy, Cody. I called my mom, excited to know the pregnancy was almost at an end. Of course my mom would be in the delivery room; that wasn't even a question. When there was a pause on the other end of the phone, I asked,
"You're going to be there, right?"
To which she responded, "I don't know, I guess it depends on how early it is. I have a hard time getting up early these days. I can always come by later when I wake up, I'm sure you won't have the baby yet."
I hung up the phone feeling hurt and angry. I was in utter disbelief at her selfish attitude. This was not the mother I once had. What was wrong with her? Why was she acting so selfish??
Delivery day came and she strolled in the labor and delivery room mid-morning (I had arrived around five o clock that morning). She was happy to meet her new grandbaby, but left pretty quickly after he arrived; quite the contrast to my first delivery where she stuck around to attend her first bath in the nursery. In the week following, she came over once or twice after work for about half an hour or so to see the baby. But she was usually too tired to hang out for too long or to do anything helpful.
Another three years later, I became pregnant with my third, and final, baby (who is now almost a year old). This pregnancy was the worst yet. It didn't help that I had three other kids to take care of: my own two children as well as my husband's niece, Maurina (then 14), whom we had adopted when Aubrey was a baby. On a typical day, I was throwing up anywhere from 2-4 times; sometimes more, sometimes less. I could hardly keep anything down. It was hard to function. I had no strength, no energy; it sounds drastic but I felt like I was dying, like I was slowly wasting away to nothing. I was fortunate to have a friend who helped me transport Aubrey to and from Kindergarten each day, but I was still left to pick Maurina up from the high school every afternoon. Most days I would lay on the couch all day, only getting up to tend to the kids; then I'd get the kids in the car to pick Maurina up from school and quickly pull into the driveway, leaving Maurina to get the kids out while I ran as quick as I could to the toilet. It was all I could do to keep from pulling over on the side of the road on the way home to relieve my horribly upset stomach.
When we had moved (during my second pregnancy), we bought a house a mile up the road from my parent's. One would expect that I could call my mom to help me out; not the case. By this time, her disease (still undiagnosed) had progressed to the point that it resulted in a leave from her job, which meant she was home all day long. Not once did she come to take care of me. Not once. I remember one day, my son, Cody, got sick. He had been running high fevers for a few days. One afternoon, he woke up from his nap with a fever of 105 degrees! Of course it was one of my worst days of morning sickness. Every time I got off the couch, it resulted in a mad dash to the toilet bowl. I was extremely stressed out and desperate for help. I called my mom, knowing she wouldn't be jumping at the call to come help, but believing she would when I told her how high his fever had spiked. Her response?
"I'm laying down right now, I'm just so tired, I'm not feeling so well today. I'm sorry."
After calling a couple other people and coming up with nothing, I lay on the bathroom floor in tears, while Cody sat in a lukewarm bath screaming his head off. I cried out of fear for my child, I cried out of anger and frustration with my mom, I cried out of mere exhaustion; at that moment I felt so alone and devastated. It was the moment when I was forced to face the cruel realization that I no longer had a mother to be there for me.
She made it to the delivery room, where we welcomed Ryer into our family. It was pretty much the same scenario as with Cody: strolling in the room at mid-morning and leaving as soon as he was out. My OB also happens to be her OB, so as soon as he entered the room she made sure to tell him that she had an appointment with him in a few weeks because of all the pains she was having in her stomach, due to fibroids.
After Ryder was born, I don't remember her coming over at all, aside from family dinners and other family gatherings. A week after Ryder's birth, Jeff had to return to work and I was on my own. I loaded the kids up in the car each morning and afternoon to take Aubrey to and from school. This required parking up the hill from the school (parking is a nightmare over there!), pulling out the heavy double stroller to load both boys in and pushing them downhill to the school and then back up to where we parked. The crossing guard made a comment to me one morning, that first week after he was born,
"I can't believe you're back out here already after just having a baby!"
What choice did I have? Somebody had to take her to school.
This past week has been another tough one for me. Aubrey developed a fever last week, along with a horrible cough and head cold, which she graciously shared with Cody and me. I've been struggling to take care of the kids and give myself some rest at the same time. When moms get sick, they don't get a day off. I envy my sister-in-law, who has her mother to nurse her back to health and help with her kids whenever she gets sick. I used to have that. And I feel sad that I no longer have that for myself. I am trying not to throw myself a pity party, but in the moments when I am weak, when I just want to go take a nap and rest my achey, feverish, sick body rather than tend to rowdy kids, I just want my mom back. It doesn't matter how old you get, a girl always needs her mom.
I've said it before: I've spent many years in anger with mom over these events. I realize, now, that it is beyond her control. It doesn't take the hurt away, but it's a different kind of hurt. The anger that was once directed towards her has been rerouted. I will always hold dear the memories of who my mom once was. I know there will come a time when it will be my turn to repay her for the many years she spent nurtuing me back to health. It's scary to look at the future and think about me nursing my mother; I'm not entirely sure of what that means yet. But I am trying to prepare myself for what is to come.
Wednesday, March 28, 2012
Sunday, March 18, 2012
Taking the Keys Away
My mom has always been the perfect driver, and I mean perfect. We're talking a perfect 3-car following distance, hands always directly on ten and two o clock, stopping for a complete three seconds at the stop-sign, never going a mile over (or under) the speed limit...she was always a textbook driver. In over 30 years of driving, she has never had a ticket or an accident. Perfect. With the memory loss problems she has been having, she has prided herself on her ability to continue driving.
Over the past year or so, we've noticed mom's driving skills are not quite up to her once-high standard. She tailgates and puts on the brakes suddenly. I remember following behind her in our own car, not too long ago, and she suddenly slammed on the brakes at a green light because a small tumble weed had blown in front of her. Luckily we had a safe distance between us and were able to stop before we hit her. Another time, she was driving my dad and reminiscing about her old family home down the street and she slowed down her speed. Dad had to tell her that it wasn't safe to suddenly slow down in the middle of traffic just to lookey-loo around. Needless to say, we haven't felt too comfortable with her behind the wheel and more recently we won't ride in the car with her driving. She, however, sees no problems in her driving, even after her very first fender-bender a couple of months ago. She was backing out of her parking spot when she hit a car behind her. She claims that person came from out of nowhere, and that is possible. But with her focus and attention difficulties, it's hard to know the truth. That was the first time we were forced to think about if she was really safe behind the wheel.
We knew it would be a battle when the day came that we'd have to take the keys, and quite honestly, I think it was a battle that my dad was not ready to face. UCLA made the decision for us, ready or not. They informed my dad that they are mandated reporters, which means that they are madated to report to the DMV the diagnosis of mom. They told him that they would receive a notice in the mail from the DMV and that mom could go down to the DMV to take a test if she was adamant that she is still able and competent to drive. The doctor wrote my dad an order on a perscription slip of paper with the words "Do Not Drive". Mom was very unhappy with the "stupid" doctors who said she couldn't drive and would not accept their order. My dad thought that he needed to break her in slowly (let her get used to the idea for a little bit) and was under the impression that she was still able to drive until they received notice from the DMV. After talking it over with several people-my sister, my Aunt and Uncle, another Aunt, and myself-my dad finally accepted the harsh reality that he was going to have to take the car keys.
Saturday night, my dad tried explaining to my mom that she was not allowed to drive. He told her that I would be over to pick her up at 8:30 am the following morning for church, since he would already be gone to church meetings prior to 8:30. She argued back and forth with him, not comprehending why she was ordered not to drive. She insisted that she's "a good driver". He tried to explain to her that she has a condition called dementia, and that people with dementia are not allowed to drive. That explanation went completely over her head.
I knew that she wasn't going to readily accept her new fate. And so I was prepared that on Sunday morning, I would most likely have a fight on my hands. I called her at 8:15 to remind her that I was coming. She gave me an adamant "NO, you are not coming to drive me, I can drive myself....I don't know why they're saying I can't drive, I've always been a good driver..." The argument ensued for the next ten minutes as I tried to calmly and gently explain to her that she was not allowed to drive. She wouldn't give in. Frustrated, I tried to call my dad. No answer. I sent him a text stating that she was refusing to go with me. I got in the car and drove to my mom's house. When I walked in the door, she had her back to me and ignored me, looking for something in a box of paperwork on the floor. I could see right away that she was mad. Fuming mad. With much hostility in her tone, she told me,
"I'm not going with you, no. I can drive myself".
I asked her what she was looking for. "That paper thing your dad says the doctor wrote. I want to see that."
Immediately, I found the note written on the prescription slip with the orders "Do Not Drive". I showed it to her, and she snatched it from my hand. Remaining calm, I tried to explain to her what the note meant. If she were caught driving against these orders, she could get in trouble. My words didn't register with her.
"I'm feeling really sad that you guys are all picking on me. I'm not happy with this doctor, he doesn't even know me. I'm not a bad driver, there's no reason why I can't drive."
Everything she says is with anger and hostility in her tone and with a scowl on her face. She put the note in her purse.
"I'm taking this to my Bishop too. And I'm taking it to Dr. Thio too. I'm mad at your dad for doing this to me."
I take a deep breath, "Mom, your Bishop can't do anything about it and neither can Dr. Thio."
She responded with, "I don't know why he's punishing me. I'm not going back to those doctors, I don't like them. It makes me feel like maybe I should just go die then!"
When she gets angry, and feels like she is being picked on, mom makes comments about dying. At first, we weren't sure how to respond to this. Sadly, we are becoming accustomed to these outbursts and know that it is her defense mechanism.
I tried to tell her that nobody is punishing her. We are not doing this because we're upset with her. I put my arm around her and told her that we are taking her to these doctors because we love her and want to help her. These doctors at UCLA are the best of the best, they have found out what is going wrong in her brain and it's called dementia. People with dementia are not able to drive. Sure, she may be okay today. But over time it will get worse and she may end up hurting somebody, or hurting herself.
She shook her head and answered with a firm and angry "No. I'm not going with you. I just won't go to church then." She plopped down on the couch, with her arms folded on her lap, each hand hugging the opposite elbow and her back slumped over.
I sighed. Just then, my dad called. He told me he had just gotten out of his meeting. He asked to talk to my mom; she refused to talk to him. He told me that he would swing by to talk to mom and coax her to come with him to church. I sat next to my mom on the couch while I waited for my dad, and with her head hung down and eyes fixed on her skirt, she snaps,
"At least this shirt matches this color," as she points to a paisley design in her skirt.
"What?" I was a little taken aback by the abrupt change in subject.
"At least this shirt matches. My skirt has some of this other blue color too. It's good I don't have to wear my black shirt," she says, not looking up, and most certainly not without the scowl on her face or crank in her tone.
I gave her a smile. "It's a nice skirt mom, is this the new one you bought at Kohl's the other day?'
"Yes," she snapped back. It was quiet for a minute, and then she began her rant and argument about the driving situation. "I have to drive....I have appointments to go to, you're not gonna take me to them..." It goes on and on.
A few minutes later, my dad walked through the door. Initially, she ignored him. When she could no longer resist, she stood up and began her protest once again with him. He told her that "besides, your tire on your car is flat. You can't drive your car anyway" to which she accused him "you did that on purpose." (In fact, it was just a coincidence that her back tire had become flat that morning...I hadn't even noticed it when I walked to the door).
She continued to argue and looked at the clock; 8:45. She once again threw herself on the couch and said "I'm gonna be late now. I'm just not going!"
It takes 10 minutes to get to the church. One of mom's obsessions is time. She has to be very early or she thinks she's late. My dad was very patient and very gently took her by the arm and said "Come on dear, let's go."
Eventually, after a few more protests, she gave in. But she made sure that my dad knew the entire drive to the church that she was not happy about this and that she was going to make sure to tell her other doctors about this. She will not go down without a fight!
At family dinner that night, she pulled my Aunt into my daughter's room as soon as Aunt Sharon walked in the door (Aunt Sharon is a nurse). She told her all about the incident and asked her what she thought. Aunt Sharon was very honest; she told her that we did the right thing and tried to explain some things to my mom. Most of it went over her head. She holds firm that she has always been a good driver and doesn't deserved to be "punished".
Today I drove her to her hair appointment. She seems to have calmed down a bit. Maybe once her tire is fixed she'll get a new wind. She told me she was thankful that I drove her to get her hair done. She also expressed her feelings, yet again, on the topic. I expect it will be a hot topic for quite some time. Every new person she runs into will hear all about it. We just need to be patient with her. It's a hard thing to lose one's independence. I feel for her. I know this isn't any easier on her as it is with us. We, at least, understand her condition. She is not capable of grasping what is going on in her brain. In the meantime, we are all doing our best to help this transition go smoothly.
Over the past year or so, we've noticed mom's driving skills are not quite up to her once-high standard. She tailgates and puts on the brakes suddenly. I remember following behind her in our own car, not too long ago, and she suddenly slammed on the brakes at a green light because a small tumble weed had blown in front of her. Luckily we had a safe distance between us and were able to stop before we hit her. Another time, she was driving my dad and reminiscing about her old family home down the street and she slowed down her speed. Dad had to tell her that it wasn't safe to suddenly slow down in the middle of traffic just to lookey-loo around. Needless to say, we haven't felt too comfortable with her behind the wheel and more recently we won't ride in the car with her driving. She, however, sees no problems in her driving, even after her very first fender-bender a couple of months ago. She was backing out of her parking spot when she hit a car behind her. She claims that person came from out of nowhere, and that is possible. But with her focus and attention difficulties, it's hard to know the truth. That was the first time we were forced to think about if she was really safe behind the wheel.
We knew it would be a battle when the day came that we'd have to take the keys, and quite honestly, I think it was a battle that my dad was not ready to face. UCLA made the decision for us, ready or not. They informed my dad that they are mandated reporters, which means that they are madated to report to the DMV the diagnosis of mom. They told him that they would receive a notice in the mail from the DMV and that mom could go down to the DMV to take a test if she was adamant that she is still able and competent to drive. The doctor wrote my dad an order on a perscription slip of paper with the words "Do Not Drive". Mom was very unhappy with the "stupid" doctors who said she couldn't drive and would not accept their order. My dad thought that he needed to break her in slowly (let her get used to the idea for a little bit) and was under the impression that she was still able to drive until they received notice from the DMV. After talking it over with several people-my sister, my Aunt and Uncle, another Aunt, and myself-my dad finally accepted the harsh reality that he was going to have to take the car keys.
Saturday night, my dad tried explaining to my mom that she was not allowed to drive. He told her that I would be over to pick her up at 8:30 am the following morning for church, since he would already be gone to church meetings prior to 8:30. She argued back and forth with him, not comprehending why she was ordered not to drive. She insisted that she's "a good driver". He tried to explain to her that she has a condition called dementia, and that people with dementia are not allowed to drive. That explanation went completely over her head.
I knew that she wasn't going to readily accept her new fate. And so I was prepared that on Sunday morning, I would most likely have a fight on my hands. I called her at 8:15 to remind her that I was coming. She gave me an adamant "NO, you are not coming to drive me, I can drive myself....I don't know why they're saying I can't drive, I've always been a good driver..." The argument ensued for the next ten minutes as I tried to calmly and gently explain to her that she was not allowed to drive. She wouldn't give in. Frustrated, I tried to call my dad. No answer. I sent him a text stating that she was refusing to go with me. I got in the car and drove to my mom's house. When I walked in the door, she had her back to me and ignored me, looking for something in a box of paperwork on the floor. I could see right away that she was mad. Fuming mad. With much hostility in her tone, she told me,
"I'm not going with you, no. I can drive myself".
I asked her what she was looking for. "That paper thing your dad says the doctor wrote. I want to see that."
Immediately, I found the note written on the prescription slip with the orders "Do Not Drive". I showed it to her, and she snatched it from my hand. Remaining calm, I tried to explain to her what the note meant. If she were caught driving against these orders, she could get in trouble. My words didn't register with her.
"I'm feeling really sad that you guys are all picking on me. I'm not happy with this doctor, he doesn't even know me. I'm not a bad driver, there's no reason why I can't drive."
Everything she says is with anger and hostility in her tone and with a scowl on her face. She put the note in her purse.
"I'm taking this to my Bishop too. And I'm taking it to Dr. Thio too. I'm mad at your dad for doing this to me."
I take a deep breath, "Mom, your Bishop can't do anything about it and neither can Dr. Thio."
She responded with, "I don't know why he's punishing me. I'm not going back to those doctors, I don't like them. It makes me feel like maybe I should just go die then!"
When she gets angry, and feels like she is being picked on, mom makes comments about dying. At first, we weren't sure how to respond to this. Sadly, we are becoming accustomed to these outbursts and know that it is her defense mechanism.
I tried to tell her that nobody is punishing her. We are not doing this because we're upset with her. I put my arm around her and told her that we are taking her to these doctors because we love her and want to help her. These doctors at UCLA are the best of the best, they have found out what is going wrong in her brain and it's called dementia. People with dementia are not able to drive. Sure, she may be okay today. But over time it will get worse and she may end up hurting somebody, or hurting herself.
She shook her head and answered with a firm and angry "No. I'm not going with you. I just won't go to church then." She plopped down on the couch, with her arms folded on her lap, each hand hugging the opposite elbow and her back slumped over.
I sighed. Just then, my dad called. He told me he had just gotten out of his meeting. He asked to talk to my mom; she refused to talk to him. He told me that he would swing by to talk to mom and coax her to come with him to church. I sat next to my mom on the couch while I waited for my dad, and with her head hung down and eyes fixed on her skirt, she snaps,
"At least this shirt matches this color," as she points to a paisley design in her skirt.
"What?" I was a little taken aback by the abrupt change in subject.
"At least this shirt matches. My skirt has some of this other blue color too. It's good I don't have to wear my black shirt," she says, not looking up, and most certainly not without the scowl on her face or crank in her tone.
I gave her a smile. "It's a nice skirt mom, is this the new one you bought at Kohl's the other day?'
"Yes," she snapped back. It was quiet for a minute, and then she began her rant and argument about the driving situation. "I have to drive....I have appointments to go to, you're not gonna take me to them..." It goes on and on.
A few minutes later, my dad walked through the door. Initially, she ignored him. When she could no longer resist, she stood up and began her protest once again with him. He told her that "besides, your tire on your car is flat. You can't drive your car anyway" to which she accused him "you did that on purpose." (In fact, it was just a coincidence that her back tire had become flat that morning...I hadn't even noticed it when I walked to the door).
She continued to argue and looked at the clock; 8:45. She once again threw herself on the couch and said "I'm gonna be late now. I'm just not going!"
It takes 10 minutes to get to the church. One of mom's obsessions is time. She has to be very early or she thinks she's late. My dad was very patient and very gently took her by the arm and said "Come on dear, let's go."
Eventually, after a few more protests, she gave in. But she made sure that my dad knew the entire drive to the church that she was not happy about this and that she was going to make sure to tell her other doctors about this. She will not go down without a fight!
At family dinner that night, she pulled my Aunt into my daughter's room as soon as Aunt Sharon walked in the door (Aunt Sharon is a nurse). She told her all about the incident and asked her what she thought. Aunt Sharon was very honest; she told her that we did the right thing and tried to explain some things to my mom. Most of it went over her head. She holds firm that she has always been a good driver and doesn't deserved to be "punished".
Today I drove her to her hair appointment. She seems to have calmed down a bit. Maybe once her tire is fixed she'll get a new wind. She told me she was thankful that I drove her to get her hair done. She also expressed her feelings, yet again, on the topic. I expect it will be a hot topic for quite some time. Every new person she runs into will hear all about it. We just need to be patient with her. It's a hard thing to lose one's independence. I feel for her. I know this isn't any easier on her as it is with us. We, at least, understand her condition. She is not capable of grasping what is going on in her brain. In the meantime, we are all doing our best to help this transition go smoothly.
Tuesday, March 13, 2012
The Cycle of Grief
When somebody near and dear to you is diagnosed with a terminal illness, there is a cycle of grief that you generally go through. In fact, it even has a name: the Kubler-Ross Five Stages of Grief. Generally, it refers to the person who is diagnosed with the illness. But I believe it is very much the same for the family members and close friends of the diagnosed person as well. The stages differ for each person. Some may skip a stage. Some stages linger longer than others. And sometimes you return to stages that you've already gone through. There is no one way to go about this process; grieving is a very personal thing. But in general, there is a pattern of 5 different stages that people go through when they learn they will be losing someone they love.
1. Denial: "The test results must be wrong"..."there must be a mistake"..."there is some way that we can beat this"...these are all common thoughts during this stage. It's a difficult thing to accept a devastating reality, and many people refuse to believe it.
2. Anger and grief: This can manifest itself in many different ways. Some people feel angry with themselves; other times their anger is taken out on others around them. There is a feeling of wanting to blame somebody for what is happening.
3. Bargaining: If a person has a God he/she believes in, there is usually pleading or bargaining with Him to spare the life of the ill person.
4. Despair and depression: This is similar to grief. but with depression comes an emotional attachment with a sort of acceptance. Each person handles depression differently, but usually a person who is depressed detaches themselves from others, preferring to be alone with their feelings of despair. It's natural to feel sadness, regret, fear, etc. These are the steps to acceptance.
5. Acceptance: This varies greatly from person to person, but generally there is some sort of emotional detachment as the person accepts what is to come. The person diagnosed with an illness usually comes to this point much sooner than the family/friends they leave behind.
Like I said, this is a cycle, which means it goes round and round. You may find yourself working through one stage, getting through it, and then returning to it at a future date. I think it also varies with each illness. In our case, dealing with dementia has been quite a different experience than dealing with other diseases; for example, Lou Gehrig's disease (which we experienced with my grandfather). Though there are the 5 basic stages of grieving, I think there is a far broader range of emotions that one goes through when dealing with this sort of illness.
My mom's "illness" has been an interesting cycle for us. I can't write exactly what my family has experienced in this cycle (though I've seen them go through various stages); what I can write about is my experience with it. It is unique, in that we did not get the "earth shattering" news all at once. As I explained before, this has been a gradual process, beginning around the time of her surgery (and in hindsight, it actually started at least a year before her surgery). I would say that my grieving process started before I had any idea that she was "sick"; I just didn't realize it at the time. I have felt a broad range of emotions over the past few years: hurt, anger, frustration, resentment, guilt, sadness-just to name a few. It's been hard to process all of these emotions-mostly because I didn't realize they were attached to an illness. It makes so much more sense now that we have a diagnosis and I feel like I am finally able to sort out many unresolved issues that I have had over the past few years.
Semantic Dementia begins with a sort of detachment between the person and the people in their lives. They become forgetful and distracted, tired and self-centered. In the beginning, I felt hurt when my mom started to lose interest in me and in my children. I felt hurt when I would call her on the phone to vent a frustration, a sadness or even a joy, only to hear her on the other line changing the subject to the ache she's been feeling in her arm; no response to what I had just said to her. She never wanted to be bothered to watch the kids so we could go out on a date night; she was always too tired. It hurt to see other grandmas doting on their grandbabies and I felt like there was something wrong with me, or my kids, that made my mom detach. I couldn't understand it or make sense of it.
Eventually her detachment led me to anger. Why didn't she care anymore about what I have to say? Why didn't she want to engage and take advantage of living closeby her grandbabies? I felt resentful at her selfishness, and angry that she did not appreciate having us live nearby and that she did not seem to want the close mother/daughter relationship I craved; the relationship we once had. I felt resentment when I would see friends going out and spending time with their mothers. Why couldn't I have a relationship like that with my mom? I had once had it, why had it changed? What did I do wrong?
I felt myself begin to pull away from her. I suppose it was a wall I had built to guard myself against the pain of rejection. For a while, I was bitter and maybe even cold towards her. I can remember it being Mother's Day, and while I celebrated the joy of being a mother, I secretly mourned my mother because I felt that, in many ways, I had no mother. I had pent up feelings of anger and bitterness inside and didn't feel like I had much to celebrate with my mom. I feel guilty about those feelings now, knowing what I know about her illness. But at the time, I was unaware of what was going on with her and I was reacting only at the hurt that I felt.
As time went on, and her behavior became more and more odd, my anger started to turn to frustration. It was apparent that something else was going on, and we suspected it was due to her surgery. My sister and I researched several options of what was making mom so "weird" and after stumbling upon information about "temporal lobe damage", we concluded that was the cause. Of course the anger returned, this time directed at the doctors who we felt were responsible. Somebody needed to be held responsible for the damage that was caused, for the person they took away from us. We even went so far as consulting an attorney on the issue. We took my mom's 8-inch thick medical file to that attorney's office and were convinced he would tell us we had a case. Instead, he looked through the file, reading her history, zeroing in on her surgery, and said that, although there was definitely something going on with her, nothing looked out of the ordinary as far as the surgery was concerned. We were left feeling confused, angry and hopeless.
Several people had thrown out the idea of dementia. Perhaps part of this was the denial phase for me. I was adamant that it was not dementia, but brain damage from the surgery. It was the only thing that made sense to me-to my entire family. I suppose deep down we all knew it was a possibility. But to admit dementia was to admit that she would never come back. Even with "brain damage", she would never return to the person she once was. But we thought she would eventually adapt and learn to live with the changes and live a somewhat normal life. With dementia, there is nowhere to go but downhill.
It has been a week since mom's trip to UCLA, where the doctors have said that all signs point to Semantic Dementia. As I researched exactly what that meant, my heart hurt and I experienced so many emotions over those next few days. I felt guilt; guilt that I had so wrongly misjudged her. I felt anger; angry that I would inevitable lose my mom. I felt fear of what is to come in the future. I watched my grandfather suffer in his final days, as he lost the ability to care for himself. Is this what is to come for my mother? Is she going to eventually forget who I am? Will she be unable to care for herself at some point? I feet sadness at the time that I had wasted in my misguided anger at her. I feel sorry for what has happened to her. Her life, as we once knew it, is gone and she's still relatively young; only 50 years old.
I know that this will be a rollercoaster ride. I feel much stronger now than I did a week ago when we received the initial news. But I am sure that will change as time goes on. We are still awaiting an MRI, where they will get a closer look at what is going on in her brain. I have prepared myself, mentally, for more bad news. Even though I feel strong now, I may revert back to a "depression" or "denial" stage, depending on what the results say.
I think that over the past week, I have had some time to reflect. I wouldn't say that I have passed the grieving stage completely. I am finally able to talk about it without crying (for now, anyway). I have realized, to some degree, what this disease means and I know that there are some tough times ahead. I know that everyday is a gift from God, and we must use this time wisely. I will not spend another day angry and bitter, ashamed and embarassed at my mother. Instead, I will embrace the time that I have left with her. I am preparing myself to be there, physically and emotionally, for both my mom and my dad. I'm prepared for a rough road ahead, but I am thankful to have a strong family to help each other get through the ups and downs that lie ahead.
1. Denial: "The test results must be wrong"..."there must be a mistake"..."there is some way that we can beat this"...these are all common thoughts during this stage. It's a difficult thing to accept a devastating reality, and many people refuse to believe it.
2. Anger and grief: This can manifest itself in many different ways. Some people feel angry with themselves; other times their anger is taken out on others around them. There is a feeling of wanting to blame somebody for what is happening.
3. Bargaining: If a person has a God he/she believes in, there is usually pleading or bargaining with Him to spare the life of the ill person.
4. Despair and depression: This is similar to grief. but with depression comes an emotional attachment with a sort of acceptance. Each person handles depression differently, but usually a person who is depressed detaches themselves from others, preferring to be alone with their feelings of despair. It's natural to feel sadness, regret, fear, etc. These are the steps to acceptance.
5. Acceptance: This varies greatly from person to person, but generally there is some sort of emotional detachment as the person accepts what is to come. The person diagnosed with an illness usually comes to this point much sooner than the family/friends they leave behind.
Like I said, this is a cycle, which means it goes round and round. You may find yourself working through one stage, getting through it, and then returning to it at a future date. I think it also varies with each illness. In our case, dealing with dementia has been quite a different experience than dealing with other diseases; for example, Lou Gehrig's disease (which we experienced with my grandfather). Though there are the 5 basic stages of grieving, I think there is a far broader range of emotions that one goes through when dealing with this sort of illness.
My mom's "illness" has been an interesting cycle for us. I can't write exactly what my family has experienced in this cycle (though I've seen them go through various stages); what I can write about is my experience with it. It is unique, in that we did not get the "earth shattering" news all at once. As I explained before, this has been a gradual process, beginning around the time of her surgery (and in hindsight, it actually started at least a year before her surgery). I would say that my grieving process started before I had any idea that she was "sick"; I just didn't realize it at the time. I have felt a broad range of emotions over the past few years: hurt, anger, frustration, resentment, guilt, sadness-just to name a few. It's been hard to process all of these emotions-mostly because I didn't realize they were attached to an illness. It makes so much more sense now that we have a diagnosis and I feel like I am finally able to sort out many unresolved issues that I have had over the past few years.
Semantic Dementia begins with a sort of detachment between the person and the people in their lives. They become forgetful and distracted, tired and self-centered. In the beginning, I felt hurt when my mom started to lose interest in me and in my children. I felt hurt when I would call her on the phone to vent a frustration, a sadness or even a joy, only to hear her on the other line changing the subject to the ache she's been feeling in her arm; no response to what I had just said to her. She never wanted to be bothered to watch the kids so we could go out on a date night; she was always too tired. It hurt to see other grandmas doting on their grandbabies and I felt like there was something wrong with me, or my kids, that made my mom detach. I couldn't understand it or make sense of it.
Eventually her detachment led me to anger. Why didn't she care anymore about what I have to say? Why didn't she want to engage and take advantage of living closeby her grandbabies? I felt resentful at her selfishness, and angry that she did not appreciate having us live nearby and that she did not seem to want the close mother/daughter relationship I craved; the relationship we once had. I felt resentment when I would see friends going out and spending time with their mothers. Why couldn't I have a relationship like that with my mom? I had once had it, why had it changed? What did I do wrong?
I felt myself begin to pull away from her. I suppose it was a wall I had built to guard myself against the pain of rejection. For a while, I was bitter and maybe even cold towards her. I can remember it being Mother's Day, and while I celebrated the joy of being a mother, I secretly mourned my mother because I felt that, in many ways, I had no mother. I had pent up feelings of anger and bitterness inside and didn't feel like I had much to celebrate with my mom. I feel guilty about those feelings now, knowing what I know about her illness. But at the time, I was unaware of what was going on with her and I was reacting only at the hurt that I felt.
As time went on, and her behavior became more and more odd, my anger started to turn to frustration. It was apparent that something else was going on, and we suspected it was due to her surgery. My sister and I researched several options of what was making mom so "weird" and after stumbling upon information about "temporal lobe damage", we concluded that was the cause. Of course the anger returned, this time directed at the doctors who we felt were responsible. Somebody needed to be held responsible for the damage that was caused, for the person they took away from us. We even went so far as consulting an attorney on the issue. We took my mom's 8-inch thick medical file to that attorney's office and were convinced he would tell us we had a case. Instead, he looked through the file, reading her history, zeroing in on her surgery, and said that, although there was definitely something going on with her, nothing looked out of the ordinary as far as the surgery was concerned. We were left feeling confused, angry and hopeless.
Several people had thrown out the idea of dementia. Perhaps part of this was the denial phase for me. I was adamant that it was not dementia, but brain damage from the surgery. It was the only thing that made sense to me-to my entire family. I suppose deep down we all knew it was a possibility. But to admit dementia was to admit that she would never come back. Even with "brain damage", she would never return to the person she once was. But we thought she would eventually adapt and learn to live with the changes and live a somewhat normal life. With dementia, there is nowhere to go but downhill.
It has been a week since mom's trip to UCLA, where the doctors have said that all signs point to Semantic Dementia. As I researched exactly what that meant, my heart hurt and I experienced so many emotions over those next few days. I felt guilt; guilt that I had so wrongly misjudged her. I felt anger; angry that I would inevitable lose my mom. I felt fear of what is to come in the future. I watched my grandfather suffer in his final days, as he lost the ability to care for himself. Is this what is to come for my mother? Is she going to eventually forget who I am? Will she be unable to care for herself at some point? I feet sadness at the time that I had wasted in my misguided anger at her. I feel sorry for what has happened to her. Her life, as we once knew it, is gone and she's still relatively young; only 50 years old.
I know that this will be a rollercoaster ride. I feel much stronger now than I did a week ago when we received the initial news. But I am sure that will change as time goes on. We are still awaiting an MRI, where they will get a closer look at what is going on in her brain. I have prepared myself, mentally, for more bad news. Even though I feel strong now, I may revert back to a "depression" or "denial" stage, depending on what the results say.
I think that over the past week, I have had some time to reflect. I wouldn't say that I have passed the grieving stage completely. I am finally able to talk about it without crying (for now, anyway). I have realized, to some degree, what this disease means and I know that there are some tough times ahead. I know that everyday is a gift from God, and we must use this time wisely. I will not spend another day angry and bitter, ashamed and embarassed at my mother. Instead, I will embrace the time that I have left with her. I am preparing myself to be there, physically and emotionally, for both my mom and my dad. I'm prepared for a rough road ahead, but I am thankful to have a strong family to help each other get through the ups and downs that lie ahead.
Sunday, March 11, 2012
What is Semantic Dementia?
One night, when I was pregnant with my first child, I made the mistake of watching "The Notebook" for the very first time. The movie starts with the romantic story of young love and evolves into a heartwrenching tale of that same young girl who had developed dementia and forgotten her husband. He reads to her from a notebook every night, in hopes that he will spark her memory of the powerful love they once shared. I'm not generally a crier in movies. But as I saw the scenes play out, with his determination to "bring her back", it broke my heart. I bawled my eyes out that night. There were three things I concluded from watching that movie: 1-never watch a tearjerker when you're pregnant 2-when it's my time to go, it will be in my sleep with my husband's arms wrapped around me, the two of us leaving this earth together and 3-dementia is one of the most devastating diseases known to man. That movie haunted me for the better part of the weekend. I couldn't shake off the feeling of sadness. Imagine living in a world where you can't remember anyone, least of all the people who you loved and have loved you best. Imagine having your loved one not remember who you are. What a painful situation.
My mind now wanders back to "The Notebook". Is that what the end will look like for my mom? Will there come a point in time where my mom will no longer remember who I am? Will there come a point where she will no longer remember my dad, who has been her sweetheart since childhood? The thought of it stabs me in the heart. I don't know all of the answers. There are many unknowns and I've compiled my list of questions for the next trip to UCLA. In the meantime, I've done my research in hopes of finding some answers to these difficult questions. I'm afraid the answers haven't brought me any comfort. I've spent the past three days on the verge of tears. I am finding it difficult to concentrate on much else. My mind keeps returning to the studies I've read on the disease. My heart aches as I picture the road that lies ahead. This is what I've learned about Semantic Dementia.
First, Semantic Dementia is very rare. It is a genetic defect that usually comes "out of the blue", with no family history of the illness. Although it can be hereditary, it is a small percentage of the Semantic Dementia "population" where this is the case. This is probably the best news I have read on the illness. I would be lying if I said that the fear hasn't crossed my mind that I will someday inherit dementia. The age of onset is usually between the ages of 50-65, give or take a few years. My mom will be 51 in May; she was 46 when she likely began exhibiting these symptoms.
Sematic Dementia is in the frontotemporal lobe dementia category, which makes sense why we at first thought it was temporal lobe damage from her surgery (many of the symptoms are the same). There are four major symptoms to look for in Semantic Dementia:
1. Language-sufferers will have a hard time remembering what certain objects are called. They will use words incorrectly. They have a hard time processing things that are said to them and difficulty in processing what words mean.
2. Recognition of Faces and Objects-they have difficulty recognizing people whom they do not see regularly. They can also have difficulty recognizing certain objects (such as a carrot in the grocery store).
3. Memory-there is problem in memory, but only a certain type of memory, which is called Semantic memory. Semantic memory tells you who faces represent, what objects signify, what words mean. While there is a disconnect in this area of memory, other memories are well preserved, such a how to drive to familiar places, or recalling certain events from the past.
4. Personality and Behavior- sufferers become inflexible and self-centered. They have no awareness of the feelings of others. They may become preoccupied with only a few activities and adopt a fixed daily routine (they have to do certain things at certain times).
The sufferer is not able to control any of these behaviors or difficulties. They are usually aware of some of the difficulties; my mom knows that she has a problem remembering who people are. It is embarassing for her. But she does not understand the extent of her disabilities, as is the case with all sufferers of Semantic Dementia.
I stumbled onto a site which broke down the stages of Semantic Dementia.
First comes the mild stage. Memory of day-to-day events are usually spared. This stage starts with the language problems. Words that aren't commonly used are replaced by words such as "thing". My mom has adopted some new favorite words. She uses the word "too" at the end of nearly every sentence. She says "thing" for objects or words that she can't remember. Other favorite words, which will come up in any given conversation, include "blessing", "severe", "correctly" or "incorrectly", "supportive", "delicious". She'll use phrases like "which is good" repetitively.
After a few years comes the moderate stage. This is when they have trouble understanding what others are saying. There is increasing difficulty in recognizing faces and names of people, even friends and family. They develop behavioral problems similar to those who suffer frontotemporal lobe damage (ftd). Mom has much difficulty in these areas, as I have already mentioned. If she does not see a person on a regular basis, she will not remember who they are. It doesn't matter if that person was her maid of honor and best friend for 15 years. It doesn't matter if they nieces or nephews that have been away for a while, or my best friend who was like a daughter to her. If she doesn't see them regularly, she cannot place them.
After 4-5 years is the severe stage. This is where the disease becomes more advanced. Their behavior becomes worse. Some behaviors include apathy, compulsions, altered food preference, impaired facial recognition and weight gain. They tend to show interest in games with symbols and words. When I read about the "severe" stage, my heart sank into my stomach. This is my mom in a nutshell. Aside from the memory/recognition problems, and her behavior problems, she has gained weight (which she constantly complains about) and has developed an altered food preference. She loves hamburgers, milkshakes, tortellini and frozen mixed vegetables. Those are her staple foods. She is a picky eater-worse than my three year old. If we fix something she doesn't like, she brings her "delicioius" tortellini. She has compulsive behaviors; she will not step a toe onto the porch without her make-up on. She is obsessed with her time schedule. She has to take her medication on the dot...8:30 am, 2:30 pm, 8:30 pm. Not a minute before, not a minute after. Lunch is at noon, dinner is at 5:30 and bedtime is 9:00. My mom spends her days playing card games on the computer and doing word puzzles on the couch.
It is alarming, but it seems as though she fits under the severe category.
What is the prognosis?
People diagnosed with Semantic Dementia are usually given between 6-8 years to live.
My mind now wanders back to "The Notebook". Is that what the end will look like for my mom? Will there come a point in time where my mom will no longer remember who I am? Will there come a point where she will no longer remember my dad, who has been her sweetheart since childhood? The thought of it stabs me in the heart. I don't know all of the answers. There are many unknowns and I've compiled my list of questions for the next trip to UCLA. In the meantime, I've done my research in hopes of finding some answers to these difficult questions. I'm afraid the answers haven't brought me any comfort. I've spent the past three days on the verge of tears. I am finding it difficult to concentrate on much else. My mind keeps returning to the studies I've read on the disease. My heart aches as I picture the road that lies ahead. This is what I've learned about Semantic Dementia.
First, Semantic Dementia is very rare. It is a genetic defect that usually comes "out of the blue", with no family history of the illness. Although it can be hereditary, it is a small percentage of the Semantic Dementia "population" where this is the case. This is probably the best news I have read on the illness. I would be lying if I said that the fear hasn't crossed my mind that I will someday inherit dementia. The age of onset is usually between the ages of 50-65, give or take a few years. My mom will be 51 in May; she was 46 when she likely began exhibiting these symptoms.
Sematic Dementia is in the frontotemporal lobe dementia category, which makes sense why we at first thought it was temporal lobe damage from her surgery (many of the symptoms are the same). There are four major symptoms to look for in Semantic Dementia:
1. Language-sufferers will have a hard time remembering what certain objects are called. They will use words incorrectly. They have a hard time processing things that are said to them and difficulty in processing what words mean.
2. Recognition of Faces and Objects-they have difficulty recognizing people whom they do not see regularly. They can also have difficulty recognizing certain objects (such as a carrot in the grocery store).
3. Memory-there is problem in memory, but only a certain type of memory, which is called Semantic memory. Semantic memory tells you who faces represent, what objects signify, what words mean. While there is a disconnect in this area of memory, other memories are well preserved, such a how to drive to familiar places, or recalling certain events from the past.
4. Personality and Behavior- sufferers become inflexible and self-centered. They have no awareness of the feelings of others. They may become preoccupied with only a few activities and adopt a fixed daily routine (they have to do certain things at certain times).
The sufferer is not able to control any of these behaviors or difficulties. They are usually aware of some of the difficulties; my mom knows that she has a problem remembering who people are. It is embarassing for her. But she does not understand the extent of her disabilities, as is the case with all sufferers of Semantic Dementia.
I stumbled onto a site which broke down the stages of Semantic Dementia.
First comes the mild stage. Memory of day-to-day events are usually spared. This stage starts with the language problems. Words that aren't commonly used are replaced by words such as "thing". My mom has adopted some new favorite words. She uses the word "too" at the end of nearly every sentence. She says "thing" for objects or words that she can't remember. Other favorite words, which will come up in any given conversation, include "blessing", "severe", "correctly" or "incorrectly", "supportive", "delicious". She'll use phrases like "which is good" repetitively.
After a few years comes the moderate stage. This is when they have trouble understanding what others are saying. There is increasing difficulty in recognizing faces and names of people, even friends and family. They develop behavioral problems similar to those who suffer frontotemporal lobe damage (ftd). Mom has much difficulty in these areas, as I have already mentioned. If she does not see a person on a regular basis, she will not remember who they are. It doesn't matter if that person was her maid of honor and best friend for 15 years. It doesn't matter if they nieces or nephews that have been away for a while, or my best friend who was like a daughter to her. If she doesn't see them regularly, she cannot place them.
After 4-5 years is the severe stage. This is where the disease becomes more advanced. Their behavior becomes worse. Some behaviors include apathy, compulsions, altered food preference, impaired facial recognition and weight gain. They tend to show interest in games with symbols and words. When I read about the "severe" stage, my heart sank into my stomach. This is my mom in a nutshell. Aside from the memory/recognition problems, and her behavior problems, she has gained weight (which she constantly complains about) and has developed an altered food preference. She loves hamburgers, milkshakes, tortellini and frozen mixed vegetables. Those are her staple foods. She is a picky eater-worse than my three year old. If we fix something she doesn't like, she brings her "delicioius" tortellini. She has compulsive behaviors; she will not step a toe onto the porch without her make-up on. She is obsessed with her time schedule. She has to take her medication on the dot...8:30 am, 2:30 pm, 8:30 pm. Not a minute before, not a minute after. Lunch is at noon, dinner is at 5:30 and bedtime is 9:00. My mom spends her days playing card games on the computer and doing word puzzles on the couch.
It is alarming, but it seems as though she fits under the severe category.
What is the prognosis?
People diagnosed with Semantic Dementia are usually given between 6-8 years to live.
Saturday, March 10, 2012
The Beginning
It's always been hard for me to verbally express how I am feeling. Now I'm not talking about if you cut in line in front of me at the grocery store, or if you have something rude to say about my kids. In those situations, I have no problem telling you exactly what I think. But when it comes to things that are near and dear to my heart, things that really dig into my emotions, it is a different story. I tend to bottle those feelings up inside of me. I find it easier to express my thoughts and my emotions through writing, rather than through spoken word.
My mom has been acting funny for the past few years. She was born with a heart murmur, and over the past several years, her condition had worsened. It eventually got to the point that she needed a repair on her leaky heart valve. In order to avoid open heart surgery, she opted to try a new procedure where the doctors went in labroscopically to repair the damage. Because this doctor had never before done this procedure, there was a long waiting period until the actual surgery took place. During that wait time, my mom began to change. She began to tire easily, she lost a lot of energy. She developed a lot of aches and pains. She started losing interest in her grandkids, which she attributed to her fatigue and body aches. All of this, she said, was a result of her heart condition. The surgery would make it better, she assured us. We were frustrated with the changes we saw in mom, and we all counted down the days for her surgery, in hopes that the mom and grandma we once knew would return back to normal.
Fast forward now to surgery, June of 2009. The new procedure was a success-as far as her heart was concerned. It took longer than anticipated, totaling 12 hours of time under anesthesia. She had a little bit of internal bleeding, but they immediately took her back in and corrected the problem. Nothing seemed out of the ordinary during those first few weeks of her recovery. Within a few months, however, we started noticing problems with her memory. She was becoming a little forgetful with names and faces. She would run into friends at the grocery store and draw a blank on who they were. When discussing this with her doctor, it was concluded that there could be several reasons for her forgetfulness. Maybe it was menopause. Maybe it was the surgery; sometimes after a surgery (particularly a heart surgery) and anesthesia, it can take a while for people to get back to "normal". They say that memory can slightly be affected and that it could take a full year for a person to be back to their normal selves. We waited, trusting in the doctors, thinking that it was just the aftermath of anesthesia.
Moving forward: January of 2010. My mom's mother very suddenly passed away. My mom was extremely close to grandma. As soon as I got the phone call, I raced to my mom's house, sure that she was falling apart. When I arrived at her house, I could tell she had been crying. She went to her room to do her hair and make-up so that we could go grandma's house, where the family was gathered. And by the way, nobody else bothered to do their hair and make-up before going over. We all thought it was bizarre behavior. As she went back to her room to get ready, she wiped away the last of her tears, and I mean the last of her tears. Throughout the next week and even at the funeral, mom shed no tears for her beloved mother.
At grandma's house, the family all mourned her sudden death and voiced their concerns about grandpa (who was dying of Lou Gehrig's disease). Mom voiced her concern about the charter bill and my sister's car payment, which was late. She rambled to my cousins about her pioneer ancestors, while we all just sat there crying and trying to make sense of what had just happened to grandma.
At grandma's funeral, my dad's brother came to offer his condolences. My mom looked at him and said "Remind me who you are again?" She could not place her brother-in-law, whom she had known for over 30 years.
I think that was the turning point for us in realizing that there was something wrong with mom. Something really wrong, more than just the "affects" of surgery wearing off.
As time went on, mom's memory worsened, and her behavior became more and more bizarre. In late 2010, she had an incident at work, which resulted in a temporary suspension and tension between her and her co-workers. She lost focus on any conversations that were not about her, or what was on her mind. In fact, we discovered that there were really only 3 topics that she would conversate about: her problems at work, her health (constant complaints of every ache and pain in her body), and her religion/pioneer ancestry. Every person she came into contact with had to hear the same stories and conversations on one of these 3 topics.
Throughout 2011, her memory continued to worsen. People often approached me to say "I saw your mom in the store the other day...she looked scared when I talked to her...she acted like she didn't know me". We would have conversations at the dinner table, sometimes even about her, and she had no clue what we were talking about. She couldn't focus on what we were saying. She had some very strange social behaviors and felt like everyone was "picking" on her when we would disagree with one of her oddities. This was when my dad began to get aggressive on finding answers to her problems. He went to one doctor after another, only to come out with no resolution. A CT scan in August showed that there was some "shrinkage" in the brain, but aside from writing her a prescription for meds, the neurologist did nothing to help us understand what this meant. In fact, he kind of dismissed it and offered the test results only as an afterthought as he talked about his own experience of heart surgery.
Over the course of the last year, our frustration has grown immensely (to say the least). Mom's condition seems to be getting worse. Her behavior has, at times, driven us on the verge of insanity, and we are getting no answers from any of these "specialists" that we have taken her to see. My dad has had the stress of battling with social security, after she took a leave from work due to her inability to function properly, only to have her denied because the doctors see no reason to sign a disability form. Each one refers us to the next guy, and nobody will take responsibility and sign the forms, even though it is quite clear that she is not in her right mind and is unable to work at full capacity. They are quick to give her drugs, but not so quick to take the time to figure out what is wrong with her.
We began our own research (with the CT scan results as our base) and were pretty much convinced that the damage in her brain was due to a lack of oxygen during her 12 hour surgery in 2009. My sister and I researched "temporal lobe damage" and many of the behaviors she exhibited seemed to coincide with that diagnosis. Problem solved. Now if we could only get the doctors to get on the same page as us and try to figure this out.
No such luck. It's one big game of ring-around-the-rosies. My dad has made phone call after phone call, gone from doctor appointment to doctor appointment, even collected all of her medical records, consulted an attorney, and still at the end of it came out empty handed. No answers. Among the phone calls he made was a call to the UCLA Medical Center, a place where people travel across the globe to seek answers for their medical mysteries. He was able to get an appointment for mom to meet with the specialists there. Finally, a glimmer of hope.
That brings us to this week: mom's appointment at UCLA. At 9:00 am, dad made the drive out to UCLA. At 6:30 pm, he finally made it back home. Granted, California traffic sucks. But he, and my mom, spent a good amount of time with a panel of doctors who actually took the time to access her condition. They looked at her medical history, they looked at her CT scan, they observed her behaviors, they talked with her and with my dad, they asked dad questions, they asked mom questions. They took their time and genuinely listened and showed concern for everything my dad had to say. They are dedicated to finding answers for my mom, for our family.
This is the good news. The bad news is that this is not brain damage from the surgery. Why is that bad news? It's bad news because it means that she has dementia. They are 90% certain that she suffers from a very rare form of dementia, called Semantic Dementia. An MRI will be scheduled in the very near future to get a more clear look at what is going on in her brain. But based on everything we have to say, based on the CT scan, their observations, her medical history and other questions asked and tests they performed, it seems almost certain that it is Semantic Dementia. An MRI will only seal the deal. They sent dad home with a booklet on information about the disease. I read the booklet. I've googled the facts. I've visited several websites. I'm convinced their diagnosis is accurate. The outlook is not so good.
So here I am. I have spent the past 3 days in a fog, as the words play over and over in my brain. Semantic Dementia. I know what this means. We have a very long road ahead of us. I write this blog for my own, personal therapy. I write this blog for all of those who ask what is going on with my mom. I write this blog to get a better understanding of this disease and in hopes to provide answers to others who might find themselves in this situation. This is our journey with dementia.
My mom has been acting funny for the past few years. She was born with a heart murmur, and over the past several years, her condition had worsened. It eventually got to the point that she needed a repair on her leaky heart valve. In order to avoid open heart surgery, she opted to try a new procedure where the doctors went in labroscopically to repair the damage. Because this doctor had never before done this procedure, there was a long waiting period until the actual surgery took place. During that wait time, my mom began to change. She began to tire easily, she lost a lot of energy. She developed a lot of aches and pains. She started losing interest in her grandkids, which she attributed to her fatigue and body aches. All of this, she said, was a result of her heart condition. The surgery would make it better, she assured us. We were frustrated with the changes we saw in mom, and we all counted down the days for her surgery, in hopes that the mom and grandma we once knew would return back to normal.
Fast forward now to surgery, June of 2009. The new procedure was a success-as far as her heart was concerned. It took longer than anticipated, totaling 12 hours of time under anesthesia. She had a little bit of internal bleeding, but they immediately took her back in and corrected the problem. Nothing seemed out of the ordinary during those first few weeks of her recovery. Within a few months, however, we started noticing problems with her memory. She was becoming a little forgetful with names and faces. She would run into friends at the grocery store and draw a blank on who they were. When discussing this with her doctor, it was concluded that there could be several reasons for her forgetfulness. Maybe it was menopause. Maybe it was the surgery; sometimes after a surgery (particularly a heart surgery) and anesthesia, it can take a while for people to get back to "normal". They say that memory can slightly be affected and that it could take a full year for a person to be back to their normal selves. We waited, trusting in the doctors, thinking that it was just the aftermath of anesthesia.
Moving forward: January of 2010. My mom's mother very suddenly passed away. My mom was extremely close to grandma. As soon as I got the phone call, I raced to my mom's house, sure that she was falling apart. When I arrived at her house, I could tell she had been crying. She went to her room to do her hair and make-up so that we could go grandma's house, where the family was gathered. And by the way, nobody else bothered to do their hair and make-up before going over. We all thought it was bizarre behavior. As she went back to her room to get ready, she wiped away the last of her tears, and I mean the last of her tears. Throughout the next week and even at the funeral, mom shed no tears for her beloved mother.
At grandma's house, the family all mourned her sudden death and voiced their concerns about grandpa (who was dying of Lou Gehrig's disease). Mom voiced her concern about the charter bill and my sister's car payment, which was late. She rambled to my cousins about her pioneer ancestors, while we all just sat there crying and trying to make sense of what had just happened to grandma.
At grandma's funeral, my dad's brother came to offer his condolences. My mom looked at him and said "Remind me who you are again?" She could not place her brother-in-law, whom she had known for over 30 years.
I think that was the turning point for us in realizing that there was something wrong with mom. Something really wrong, more than just the "affects" of surgery wearing off.
As time went on, mom's memory worsened, and her behavior became more and more bizarre. In late 2010, she had an incident at work, which resulted in a temporary suspension and tension between her and her co-workers. She lost focus on any conversations that were not about her, or what was on her mind. In fact, we discovered that there were really only 3 topics that she would conversate about: her problems at work, her health (constant complaints of every ache and pain in her body), and her religion/pioneer ancestry. Every person she came into contact with had to hear the same stories and conversations on one of these 3 topics.
Throughout 2011, her memory continued to worsen. People often approached me to say "I saw your mom in the store the other day...she looked scared when I talked to her...she acted like she didn't know me". We would have conversations at the dinner table, sometimes even about her, and she had no clue what we were talking about. She couldn't focus on what we were saying. She had some very strange social behaviors and felt like everyone was "picking" on her when we would disagree with one of her oddities. This was when my dad began to get aggressive on finding answers to her problems. He went to one doctor after another, only to come out with no resolution. A CT scan in August showed that there was some "shrinkage" in the brain, but aside from writing her a prescription for meds, the neurologist did nothing to help us understand what this meant. In fact, he kind of dismissed it and offered the test results only as an afterthought as he talked about his own experience of heart surgery.
Over the course of the last year, our frustration has grown immensely (to say the least). Mom's condition seems to be getting worse. Her behavior has, at times, driven us on the verge of insanity, and we are getting no answers from any of these "specialists" that we have taken her to see. My dad has had the stress of battling with social security, after she took a leave from work due to her inability to function properly, only to have her denied because the doctors see no reason to sign a disability form. Each one refers us to the next guy, and nobody will take responsibility and sign the forms, even though it is quite clear that she is not in her right mind and is unable to work at full capacity. They are quick to give her drugs, but not so quick to take the time to figure out what is wrong with her.
We began our own research (with the CT scan results as our base) and were pretty much convinced that the damage in her brain was due to a lack of oxygen during her 12 hour surgery in 2009. My sister and I researched "temporal lobe damage" and many of the behaviors she exhibited seemed to coincide with that diagnosis. Problem solved. Now if we could only get the doctors to get on the same page as us and try to figure this out.
No such luck. It's one big game of ring-around-the-rosies. My dad has made phone call after phone call, gone from doctor appointment to doctor appointment, even collected all of her medical records, consulted an attorney, and still at the end of it came out empty handed. No answers. Among the phone calls he made was a call to the UCLA Medical Center, a place where people travel across the globe to seek answers for their medical mysteries. He was able to get an appointment for mom to meet with the specialists there. Finally, a glimmer of hope.
That brings us to this week: mom's appointment at UCLA. At 9:00 am, dad made the drive out to UCLA. At 6:30 pm, he finally made it back home. Granted, California traffic sucks. But he, and my mom, spent a good amount of time with a panel of doctors who actually took the time to access her condition. They looked at her medical history, they looked at her CT scan, they observed her behaviors, they talked with her and with my dad, they asked dad questions, they asked mom questions. They took their time and genuinely listened and showed concern for everything my dad had to say. They are dedicated to finding answers for my mom, for our family.
This is the good news. The bad news is that this is not brain damage from the surgery. Why is that bad news? It's bad news because it means that she has dementia. They are 90% certain that she suffers from a very rare form of dementia, called Semantic Dementia. An MRI will be scheduled in the very near future to get a more clear look at what is going on in her brain. But based on everything we have to say, based on the CT scan, their observations, her medical history and other questions asked and tests they performed, it seems almost certain that it is Semantic Dementia. An MRI will only seal the deal. They sent dad home with a booklet on information about the disease. I read the booklet. I've googled the facts. I've visited several websites. I'm convinced their diagnosis is accurate. The outlook is not so good.
So here I am. I have spent the past 3 days in a fog, as the words play over and over in my brain. Semantic Dementia. I know what this means. We have a very long road ahead of us. I write this blog for my own, personal therapy. I write this blog for all of those who ask what is going on with my mom. I write this blog to get a better understanding of this disease and in hopes to provide answers to others who might find themselves in this situation. This is our journey with dementia.
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