Today I went to visit my mom. She's starting to regress a little. For a short time she was taking her medication exactly as prescribed. I got her a massive pill dispenser that broke down her meds into specific times of the day. Even though it is just morning and evening she seemed to need something that said "morning" and "evening" for her to remember which ones to take. She missed two doses since yesterday, though and her mental state was already in decline. Christina has been working hard to find mom a nurse that can take care of some basic needs during the day. Unfortunately mom can't afford too much so we are limited in what we can get for her. I'm thinking an assisted living will be where she will end up, but cost and her willingness to go are big factors.
So today Christina and I talked a little bit about the healthcare changes going on in this country. She is concerned that because she doesn't have insurance she will end up paying a fine. That won't help her get coverage and will just make it harder on her family. I've always been deadset against Universal Healthcare. I've dealt with military hospitals and the level of care you get there. I've heard Universal Healthcare is worse than that so it has me scared. But the more I'm dealing with these roadblocks in getting adequate care for my mom the more I'm liking the idea. Well, "like" is a strong word. Maybe "tolerating" the idea is a better way of saying it.
I've found it hard to believe that they (society, the government, health professions, etc) let my mom and people like her out in the community when they aren't able to make decisions for themselves. It is obvious we aren't doing enough. America seems built on the concept that everyone should "pull themselves up by their bootstraps," but the most vulnerable members of our community get left behind that way. My mom's case manager told me that she sees so many heartbreaking cases. There are many patients she sees who are homeless and she can do nothing about it, because it is their right to be homeless.
Rights are incredibly important, don't get me wrong. But at some point when a person is too mentally gone to make important decisions about medical care and living conditions don't we have the responsibility to help them, even if they don't believe they need our help?
Hopefully soon we will be able to start the guardianship process. I admit I am too chicken to start it on my own. I'm looking into organizations who will walk me through the process. It's either that or work at McDonald's or strip to come up with the cash for a lawyer. Of course after two kids and too many cheeseburgers I doubt I'd make a dime stripping.
I started calling my legislators. My delegate Bob Tata has been the most helpful. His assistant Vicki has run into the same road blocks I have, but is looking into all the legal options we have as for as guardianship or POA. She even suggested that maybe Del Tata can look into writing a bill to change the laws if they need to be changed. I won't hold my breath, but at least it seems like someone in power cares a little. Meanwhile I'm looking for help to walk me through the process. I need to get started. Every day that passes is one more day I can't help mom.
Thursday, September 23, 2010
Friday, September 17, 2010
episode 3
Well, we made it through another week. I have to say that taking care of my mom has been very trying on me. Part of it is making decisions on what to do next and part is dealing with my mother's illness. I spend a lot of time thinking about if I'm doing the right thing by suing for guardianship. There really isn't another option, but I really hate to do this to her. Children should never have to do this for their parents. My mom is fairly young and I would really love for her to have another 10 years or more where she can function and have a happy life. Now her doctor is pushing for her to be moved to an assisted living facility and she isn't even old enough to qualify for Medicare.
Yesterday was an especially trying day. I picked up my mother to take her to lunch before her appointment with her psychiatrist. Since she can't bathe herself we ate quickly and I got her in the shower. She wasn't willing to go at first, but I insisted. I had wanted to wait till after the appointment so her doctor could see her normal state (well we showered her a few times recently, so not as bad as her usual normal state), but Christina insisted I shower her before. When we got to the appointment her doctor mentioned she didn't look too bad considering she wasn't bathing. I flashed Christina an "I told you so" look before telling the doctor I had just bathed her before coming in.
The doctor reiterated he thought she should move into an assisted living. But, she refuses to go and I can't force her till we finish the guardianship process (I have been so unsure of where to start I haven't even been able to get going on that yet). The other problem is who will pay for it? We are looking into options she can afford, but until I can get control of her money we are out of luck on that was well.
I asked the doctor a question that has been weighing on me. She has been on her medications for three months and, while we see improvement, she is still delusional, paranoid and confused. I was really thinking that all she needed was the right medications and she would be able to function again like a normal person, but the doctor said that wasn't the case. The medication could only control one part of her disease. The rest was untreatable. I felt like the wind was knocked out of me. This means her state is permanent. Somehow the situation was easier to deal with when I thought there could be an end to the ordeal. Is there strength in me to do this for the next decade?
I have been able to handle most of the criticism my mom dishes out these days because I know she's not thinking clearly. She lives in her own reality. We can't visit that reality and certainly can't understand it. She often says, and mentioned it yesterday, that she hasn't seen any of her kids in 10 years so why are we around now? That is of course not true. She stayed in my home for a few days right before he last hospitalization in August 2010. I don't think there has been a month where I haven't seen her at least once in the past decade. So I ignore those things because I know they aren't true and the medical providers know we wouldn't be there if we didn't care. But yesterday I was so hurt by her criticism. She complained about the cleanliness of my house and how my front flower beds were overgrown. Now I know both of these things are a mess, but I have been focusing all my attention and time on her the past 3 months. I figured she was more important than dusting. It was all I could do not to burst into tears right there.
For those of you who don't know my mother I'll enlighten you. Her yard is like a forest. She considers it a national park. She has dead trees, upon dead trees, upon sickly trees. She randomly plants bushes and flowers all over her yard. She won't let us prune anything for fear we will kill the plant. I assure you that would be an improvement. For her to criticize my flower bed was like a 500 pound man telling a 200 pound man he needed to lose weight. And her house is fairly well picked up, but there are spider webs everywhere. When I try to knock them down or wipe a countertop she gets very aggitated. The lights are very dim and at night they cast an erie glow on big spider webs coming from the ceilings. I am temped to market it as a haunted house this Halloween and sell tickets to pay for her care. I don't think I would have to do a thing. It's pretty scary in itself. "Open the broom closet, if you dare. Bawhaahaahaahaahaaw!"
I did get a bit of really great news yesterday. I had helped my mom file for charity care with Chesapeake General Hospital after her hospitalization in June. She was recently hospitalized again at their facility. After stating my case and supplying the necessary forms the hospital agreed to write off her medical bills. I was so happy I could scream. I'm hoping the victory will hold me through the next phase.
As for guardianship, I'm planning on going it alone. We hired a lawyer back in June. After 2 months he had done nothing so we fired him. It was a waste of a $2600 and a lot of time. Mom's case manager at the CSB gave me the names of a few good lawyers and suggested I pay to have all my questions answered and start the filing process myself. We still have to pay for the Guardian ad Litem and court costs, but those are expected to run around $2K. With a lawyer it would probably be around $7K. I wish there was some way this could be easier. I need something easy these days.
Wish me luck.
Yesterday was an especially trying day. I picked up my mother to take her to lunch before her appointment with her psychiatrist. Since she can't bathe herself we ate quickly and I got her in the shower. She wasn't willing to go at first, but I insisted. I had wanted to wait till after the appointment so her doctor could see her normal state (well we showered her a few times recently, so not as bad as her usual normal state), but Christina insisted I shower her before. When we got to the appointment her doctor mentioned she didn't look too bad considering she wasn't bathing. I flashed Christina an "I told you so" look before telling the doctor I had just bathed her before coming in.
The doctor reiterated he thought she should move into an assisted living. But, she refuses to go and I can't force her till we finish the guardianship process (I have been so unsure of where to start I haven't even been able to get going on that yet). The other problem is who will pay for it? We are looking into options she can afford, but until I can get control of her money we are out of luck on that was well.
I asked the doctor a question that has been weighing on me. She has been on her medications for three months and, while we see improvement, she is still delusional, paranoid and confused. I was really thinking that all she needed was the right medications and she would be able to function again like a normal person, but the doctor said that wasn't the case. The medication could only control one part of her disease. The rest was untreatable. I felt like the wind was knocked out of me. This means her state is permanent. Somehow the situation was easier to deal with when I thought there could be an end to the ordeal. Is there strength in me to do this for the next decade?
I have been able to handle most of the criticism my mom dishes out these days because I know she's not thinking clearly. She lives in her own reality. We can't visit that reality and certainly can't understand it. She often says, and mentioned it yesterday, that she hasn't seen any of her kids in 10 years so why are we around now? That is of course not true. She stayed in my home for a few days right before he last hospitalization in August 2010. I don't think there has been a month where I haven't seen her at least once in the past decade. So I ignore those things because I know they aren't true and the medical providers know we wouldn't be there if we didn't care. But yesterday I was so hurt by her criticism. She complained about the cleanliness of my house and how my front flower beds were overgrown. Now I know both of these things are a mess, but I have been focusing all my attention and time on her the past 3 months. I figured she was more important than dusting. It was all I could do not to burst into tears right there.
For those of you who don't know my mother I'll enlighten you. Her yard is like a forest. She considers it a national park. She has dead trees, upon dead trees, upon sickly trees. She randomly plants bushes and flowers all over her yard. She won't let us prune anything for fear we will kill the plant. I assure you that would be an improvement. For her to criticize my flower bed was like a 500 pound man telling a 200 pound man he needed to lose weight. And her house is fairly well picked up, but there are spider webs everywhere. When I try to knock them down or wipe a countertop she gets very aggitated. The lights are very dim and at night they cast an erie glow on big spider webs coming from the ceilings. I am temped to market it as a haunted house this Halloween and sell tickets to pay for her care. I don't think I would have to do a thing. It's pretty scary in itself. "Open the broom closet, if you dare. Bawhaahaahaahaahaaw!"
I did get a bit of really great news yesterday. I had helped my mom file for charity care with Chesapeake General Hospital after her hospitalization in June. She was recently hospitalized again at their facility. After stating my case and supplying the necessary forms the hospital agreed to write off her medical bills. I was so happy I could scream. I'm hoping the victory will hold me through the next phase.
As for guardianship, I'm planning on going it alone. We hired a lawyer back in June. After 2 months he had done nothing so we fired him. It was a waste of a $2600 and a lot of time. Mom's case manager at the CSB gave me the names of a few good lawyers and suggested I pay to have all my questions answered and start the filing process myself. We still have to pay for the Guardian ad Litem and court costs, but those are expected to run around $2K. With a lawyer it would probably be around $7K. I wish there was some way this could be easier. I need something easy these days.
Wish me luck.
Tuesday, September 14, 2010
episode 2
My mom has always been out there. Anyone who has known me for a long time knows that she isn't quite like everyone else. I knew she had mental illness from a young age, but she had always been able to function and didn't seem a danger to anyone. Sure, she was combative and always found something to be angry or worried about, but dangerous? Never!
But last June that changed. I'll back up a bit so you understand what I mean.
Years ago when the story of Andrea Yates came out I started to see my mom differently. If you don't remember Andrea Yates was diagnosed with schizophrenia. She had 5 kids and was homeschooling them despite the fact she had been hospitalized and had recently started medication that would hopefully control her condition. One day she drowned her five kids in the bathtub so she could "save them." After hearing this I started to worry. Like her my mom had five kids and at one point three of us were homeschooled. I started to wonder how we got out of childhood alive. So I decided my children were never going to be left alone in a room with her. Not that she had ever done anything to make me worry, but her disease could not be easily predicted. I encouraged my siblings to have the same policy.
August of 2009 she got into a fight with my younger sister, Christina, and ended up calling the police. Not because anything had really happened. Only because Christina disagreed with her. Christina had been bringing her twin girls over to see her fairly often and leaving them in the house with our mother while she did yard work. But that day our mother got upset about the yard and they argued. While my sister was getting her girls ready to leave the police showed up. They quickly realized there was no real reason they were called, but then my sister begged them to have her hospitalized because of her recent erratic behavior. They referred her to Senior Services, but since Christina had already been trying and failing to get them to help they took her in to be evaluated. My neices witness their grandmother being held down and cuffed so they could place her in the police car. They continued to have nightmares for months after.
My mother began to ask the doctors to kill her and put her out of her misery, so an iffy case for hospitalization became a definite case. She was held TDO for a few days, then involuntary for a few more days. She was released with medication she never took and appointments with the Community Service Board she never kept. I recently found paperwork that said her release was conditional that her family would check on her, but she refused to let us around her. She spoke with us very rarely. Because of state laws we could do nothing to force her into treatment. We talked about guardianship, but worried we wouldn't have a strong case to file and would just make her trust us less and make our job more difficult. I left my phone number with her neighbors in case something happened and did my best to see her when she allowed.
June 2010 I was thinking I had never heard from the neighbors. I figured she might be better, but made a mental note to stop by on my next visit to my mom's house. Then, while waiting in Sam's Club to checkout I got a phone call. I let it go to voicemail since I didn't want to be rude to the cashier. I got an urgent text to call the number back immediately. On my way out of the store I called what turned out to be another one of my mom's neighbors. He had been trying to reach me for a week, but had written my number down wrong and had finally gotten the right number from a neighbor. He informed me that my mother had just tried to kidnap two of his children from his front yard, while saying she was trying to "save them." My heart stopped. He gave me all the horrible details of how she came into the yard and grabbed a two year old. The neighbor's teenage son got her to let go of the little boy and ran with him to the house. As he did that my mother grabbed a six year old and tried to leave with her. The teenager there were able to get the kids free fairly easily and my mother returned to her house.
And this wasn't the first time. She grabbed two kids from the bus stop in front of their house a week prior, but let go of them as soon as the dad asked her what she was doing. I told him to call the police and I was on my way. When Christina and I got there my mother said she was trying to save them because they were being euthanized. She believed there wasn't enough food in the community to feed everyone and an old missionary friend of hers was in charge of a government program to euthanize kids and those who didn't process their food properly (she explained she was required to run her food through a food processor prior to eating). We had her taken by police car to Chesapeake General. No handcuffs this time, thankfully.
There we sat for 13 hours waiting for evaluations, medical screenings, CSB emergency evaluators. My mom seemed okay, but when she dozed off for a few hours she woke up disoriented and couldn't remember why she was there. She started telling me the doctors in the hall were her boyfriend Javan Parsons who is also known as Jon Benet (she says Halle Berry's ex, but that is Eric Benet), also known as Warren Beatty and the famous plastic surgeon Dr Rothchild (nope, don't know who he is either). Dr Rothchild apparently stitches fat women up to make them appear skinny and has sex with them so all their stitches pop out and they are fat again.
Since these men are all of different races I asked her how he could be all those people. She replied that he uses skin bleach and dye to change races in an instant. She tried to escape a few times and lack of sleep and food was wearing on me. Finally about noon (got the call around 8pm) two sheriff's deputy's showed up and created an image in my head that I wish I could scrape out. That was of my mother being patted down and her ankles and wrists shackled to a chain that reached around her waist. She was wearing six-inch high wedge sandals and the female deputy told her to be careful not to fall and to shuffle her feet on the way out. My mom giggled and did a 1990's walking dance to her own tune out of the building.
So this is the worst of it. I could fill up books I'm sure with all the stange things she has done. I have considered going on a comedy tour, but somehow that just makes it sadder. What I hate the most is that the neighbors were so traumatized by her behavior. But if it weren't for that we could never help her.
But last June that changed. I'll back up a bit so you understand what I mean.
Years ago when the story of Andrea Yates came out I started to see my mom differently. If you don't remember Andrea Yates was diagnosed with schizophrenia. She had 5 kids and was homeschooling them despite the fact she had been hospitalized and had recently started medication that would hopefully control her condition. One day she drowned her five kids in the bathtub so she could "save them." After hearing this I started to worry. Like her my mom had five kids and at one point three of us were homeschooled. I started to wonder how we got out of childhood alive. So I decided my children were never going to be left alone in a room with her. Not that she had ever done anything to make me worry, but her disease could not be easily predicted. I encouraged my siblings to have the same policy.
August of 2009 she got into a fight with my younger sister, Christina, and ended up calling the police. Not because anything had really happened. Only because Christina disagreed with her. Christina had been bringing her twin girls over to see her fairly often and leaving them in the house with our mother while she did yard work. But that day our mother got upset about the yard and they argued. While my sister was getting her girls ready to leave the police showed up. They quickly realized there was no real reason they were called, but then my sister begged them to have her hospitalized because of her recent erratic behavior. They referred her to Senior Services, but since Christina had already been trying and failing to get them to help they took her in to be evaluated. My neices witness their grandmother being held down and cuffed so they could place her in the police car. They continued to have nightmares for months after.
My mother began to ask the doctors to kill her and put her out of her misery, so an iffy case for hospitalization became a definite case. She was held TDO for a few days, then involuntary for a few more days. She was released with medication she never took and appointments with the Community Service Board she never kept. I recently found paperwork that said her release was conditional that her family would check on her, but she refused to let us around her. She spoke with us very rarely. Because of state laws we could do nothing to force her into treatment. We talked about guardianship, but worried we wouldn't have a strong case to file and would just make her trust us less and make our job more difficult. I left my phone number with her neighbors in case something happened and did my best to see her when she allowed.
June 2010 I was thinking I had never heard from the neighbors. I figured she might be better, but made a mental note to stop by on my next visit to my mom's house. Then, while waiting in Sam's Club to checkout I got a phone call. I let it go to voicemail since I didn't want to be rude to the cashier. I got an urgent text to call the number back immediately. On my way out of the store I called what turned out to be another one of my mom's neighbors. He had been trying to reach me for a week, but had written my number down wrong and had finally gotten the right number from a neighbor. He informed me that my mother had just tried to kidnap two of his children from his front yard, while saying she was trying to "save them." My heart stopped. He gave me all the horrible details of how she came into the yard and grabbed a two year old. The neighbor's teenage son got her to let go of the little boy and ran with him to the house. As he did that my mother grabbed a six year old and tried to leave with her. The teenager there were able to get the kids free fairly easily and my mother returned to her house.
And this wasn't the first time. She grabbed two kids from the bus stop in front of their house a week prior, but let go of them as soon as the dad asked her what she was doing. I told him to call the police and I was on my way. When Christina and I got there my mother said she was trying to save them because they were being euthanized. She believed there wasn't enough food in the community to feed everyone and an old missionary friend of hers was in charge of a government program to euthanize kids and those who didn't process their food properly (she explained she was required to run her food through a food processor prior to eating). We had her taken by police car to Chesapeake General. No handcuffs this time, thankfully.
There we sat for 13 hours waiting for evaluations, medical screenings, CSB emergency evaluators. My mom seemed okay, but when she dozed off for a few hours she woke up disoriented and couldn't remember why she was there. She started telling me the doctors in the hall were her boyfriend Javan Parsons who is also known as Jon Benet (she says Halle Berry's ex, but that is Eric Benet), also known as Warren Beatty and the famous plastic surgeon Dr Rothchild (nope, don't know who he is either). Dr Rothchild apparently stitches fat women up to make them appear skinny and has sex with them so all their stitches pop out and they are fat again.
Since these men are all of different races I asked her how he could be all those people. She replied that he uses skin bleach and dye to change races in an instant. She tried to escape a few times and lack of sleep and food was wearing on me. Finally about noon (got the call around 8pm) two sheriff's deputy's showed up and created an image in my head that I wish I could scrape out. That was of my mother being patted down and her ankles and wrists shackled to a chain that reached around her waist. She was wearing six-inch high wedge sandals and the female deputy told her to be careful not to fall and to shuffle her feet on the way out. My mom giggled and did a 1990's walking dance to her own tune out of the building.
So this is the worst of it. I could fill up books I'm sure with all the stange things she has done. I have considered going on a comedy tour, but somehow that just makes it sadder. What I hate the most is that the neighbors were so traumatized by her behavior. But if it weren't for that we could never help her.
Friday, September 10, 2010
Introduction, of sorts
Well since I'm new to this I should probably introduce myself. I am 35 year old mother of two, married and am currently working towards becoming a lactation consultant. I spend more time doing volunteer jobs than anyone really should. I think it probably comes from an insecurity that makes me want to prove my worth to the world at large. It's crazy since no matter how much you do it is never enough for everyone. My volunteer commitments now are PTA, soccer coach for my daughter's team, DAR, CAR and helping moms breastfeed their babies in the way they wish to do so. Striking a balance between family commitments and volunteer duties has been difficult, but I don't think I would have it any other way. Well, I would change some things.
But right now my life is hard. Not that I would ever say it has been easy at any point in my life, but it is especially hard right now. My mother is a paranoid schizophrenic. I knew from a young age she was different than other moms. She would sleep all day. Spend way too much time listening to Pat Robertson and calling the 700 Club for someone to pray for her and often would end up in arguments that would last hours. I always felt bad for the poor person on the other end and guilty for being happy it wasn't me being yelled at. She always thought people were following her and trying to kill my father for insurance money. Whenever she saw a red car she believed it was a particular employee of my father. I always wondered why my father employed her if she spent all her time following us.
But recently she has gotten far worse. She has been involuntarily commited three times in the last 13 months. She has no insurance so we are at the mercy of the Community Service Board and the Police to decide if she needs help. And they are limited by our wonderful state laws that refuse to adequately fund mental health. Even the massacre at Virginia Tech did nothing to open the eyes of our lawmakers. The only difference I saw was that when she was on Temporary Detainment Order before the new laws took effect the hospital was not allowed to acknowledge she had been admitted. Now they are allowed to tell us how she is doing and that she is there until the court hearing is held in 2 days, then we are cut off again. I've also been told that the ability for the CSB to cover a hospital stay longer than 10 days was removed. Thanks Tim Kaine! Hope you don't meet me in a dark alley. Or better yet, hope my mom is roaming your neighborhood.
So I hope you are interested in hearing about my plight over the next few months, years, centuries, while I go through the process of suing for guardianship of my mom and try my best to get her the help she needs despite no help being available.
I'll share with you my biggest fear right now. Every time I hear my phone ring a part of me worries that this time it will be a call that my mom hurt someone. Every time I stop by my mother's house I worry what I will find. I feel like this illness took away my childhood and it is trying it's hardest to take away my adulthood. But the part that bothers me most is that it is trying to take away my kids' childhood. I can't let that happen.
I hope you will cry with me a little bit, but more often you will laugh at the absurdity of it all. Because if you don't laugh schizophrenia wins.
And please forgive my grammar and spelling. It has never been my strong point.
But right now my life is hard. Not that I would ever say it has been easy at any point in my life, but it is especially hard right now. My mother is a paranoid schizophrenic. I knew from a young age she was different than other moms. She would sleep all day. Spend way too much time listening to Pat Robertson and calling the 700 Club for someone to pray for her and often would end up in arguments that would last hours. I always felt bad for the poor person on the other end and guilty for being happy it wasn't me being yelled at. She always thought people were following her and trying to kill my father for insurance money. Whenever she saw a red car she believed it was a particular employee of my father. I always wondered why my father employed her if she spent all her time following us.
But recently she has gotten far worse. She has been involuntarily commited three times in the last 13 months. She has no insurance so we are at the mercy of the Community Service Board and the Police to decide if she needs help. And they are limited by our wonderful state laws that refuse to adequately fund mental health. Even the massacre at Virginia Tech did nothing to open the eyes of our lawmakers. The only difference I saw was that when she was on Temporary Detainment Order before the new laws took effect the hospital was not allowed to acknowledge she had been admitted. Now they are allowed to tell us how she is doing and that she is there until the court hearing is held in 2 days, then we are cut off again. I've also been told that the ability for the CSB to cover a hospital stay longer than 10 days was removed. Thanks Tim Kaine! Hope you don't meet me in a dark alley. Or better yet, hope my mom is roaming your neighborhood.
So I hope you are interested in hearing about my plight over the next few months, years, centuries, while I go through the process of suing for guardianship of my mom and try my best to get her the help she needs despite no help being available.
I'll share with you my biggest fear right now. Every time I hear my phone ring a part of me worries that this time it will be a call that my mom hurt someone. Every time I stop by my mother's house I worry what I will find. I feel like this illness took away my childhood and it is trying it's hardest to take away my adulthood. But the part that bothers me most is that it is trying to take away my kids' childhood. I can't let that happen.
I hope you will cry with me a little bit, but more often you will laugh at the absurdity of it all. Because if you don't laugh schizophrenia wins.
And please forgive my grammar and spelling. It has never been my strong point.
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