Find a Need, Fill a Need: Caregiver Support
Donación protegida
Explain what happened: yet another diagnosis, yet another treatment plan, yet another year of Acute Depression
Describe the recommended treatment: (already begun) 8 week course of accelerated treatment - NeuroField, Neurofeedback and Biofeedback at the Drake Institute of Behavioral Medicine - to correct stress hormones and adjust brain chemistry; next course of care is to fund the appropriate type of cognitive therapy specific to her condition, provided by the right mental health professionals as is there is "no cure" or "no pill." Her medical insurance provider (Kaiser) handed her tri-fold brochures for group therapy she could attend weekly. To truly heal, she needs daily cognitive care.
Explain how soon you need the funds: She requires ongoing therapeutic support for the remainder of her life. She is on a permanent leave of absence from work while she rests and heals from the most recent episode (the third one in 9 months). For now, I have a dependent adult in my home for whom I am physically, emotionally and financially responsible; without these therapies would either need residential treatment and a group home or to become a permanent dependent. I have contacted every disability lawyer I could find online and requested their "free consultation" to pursue SSI and/or SSDI for her.
Tell how these funds will help you or your loved one: She's conquered the disabling effects of Asperger's Syndrome; she has coped with her Cyclothymia using the previous 15 years of Cognitive Behavioral Therapy and ABA/Social Skills training; she has weaned off her medications - and all of the negative side effects of risperidone, trazodone, lexapro, prozac, ativan - and embraces her diagnosis, has never refused to participate in her treatments or therapies, and is committed to the care she knows she will require to cope with her adult life; her greatest concern is the day I die and leave her as her primary support "safe" person. This new course of treatment will heal the parts of her physiology that are broken and the therapeutic interventions will support her in establishing new safe people, to give her the hope to go on another day, develop a plan for future hopes, dreams and goals. While other young adults are entering their second and third years of college, my daughter is barely able to decide if she wants to wake up to see another day.
Explain if there are other ways you need help: When a child is diagnosed with Leukemia, Cancer, or a brain tumor and a GoFundMe is created, I have witnessed (and participated in) the offers of respite and relief, home-cooked meals, empathetic support, babysitting, outings, breaks and flowers are (appropriately) part of that support. When your loved one has the disease of Mental Illness it's not something most understand even what to say or that their caregiver would appreciate the same depth of sympathy and support. A break: come sit with her, take her to the movies, to a meal, offer a ride, just listen to her without judgment or trying to fix her.
Tell potential donors how urgent your situation is:
As I paid for the first round of care, I reminded myself that I could have paid for funeral costs; but by the Grace of God I, instead, am paying for her psychiatric and psychological care, at great financial stress to our home (and her minor-aged brother); I also had to take a leave of absence from work in order to accommodate her care, daily doctor's appointments, therapy visits and to supervise her healing, while protecting her from herself.
It is humbling to share. It is difficult to ask. I have secured funds for her after my death, as well as a safe person to manage those funds. What I have is a daughter who is high functioning enough but far too young to die.
UPDATE February 2019: After a 5-day 72 hour hold (I know, I know it doesn't make sense... really, it happened), and multiple leave of absences from my own work, 4-6 months to wait for denial and rejection letters, red tape and emergency room visits while filing for appeals. The life of a caregiver for any condition is grueling and there are many days that I face the unknown while broke. Through my most recent experiences, I've come to learn there are hardly services for those suffering from disabilities or mental health issues, much less support for those of us care-taking them. Yet I also realized through the inspiration of a few, kind friends and family members, that where there is a need, it can be fulfilled - if you humble yourself and ask.
Since my ability to work has been spotty = at best - and we're living on borrowed time, with too many hours on 24/7 supervision and idle time on my hands, I have formulated a new nonprofit idea: to take care of the caregivers. I am currently fundraising for our future so my daughter and I can work hand-in-hand, side-by-side together for the remainder of our lives and to provide the excess to others in need.
I have a big dream, end game idea, but I'm saving that for my IRS 501(c)(3) filing...and it's all for the love of my daughter.
Describe the recommended treatment: (already begun) 8 week course of accelerated treatment - NeuroField, Neurofeedback and Biofeedback at the Drake Institute of Behavioral Medicine - to correct stress hormones and adjust brain chemistry; next course of care is to fund the appropriate type of cognitive therapy specific to her condition, provided by the right mental health professionals as is there is "no cure" or "no pill." Her medical insurance provider (Kaiser) handed her tri-fold brochures for group therapy she could attend weekly. To truly heal, she needs daily cognitive care.
Explain how soon you need the funds: She requires ongoing therapeutic support for the remainder of her life. She is on a permanent leave of absence from work while she rests and heals from the most recent episode (the third one in 9 months). For now, I have a dependent adult in my home for whom I am physically, emotionally and financially responsible; without these therapies would either need residential treatment and a group home or to become a permanent dependent. I have contacted every disability lawyer I could find online and requested their "free consultation" to pursue SSI and/or SSDI for her.
Tell how these funds will help you or your loved one: She's conquered the disabling effects of Asperger's Syndrome; she has coped with her Cyclothymia using the previous 15 years of Cognitive Behavioral Therapy and ABA/Social Skills training; she has weaned off her medications - and all of the negative side effects of risperidone, trazodone, lexapro, prozac, ativan - and embraces her diagnosis, has never refused to participate in her treatments or therapies, and is committed to the care she knows she will require to cope with her adult life; her greatest concern is the day I die and leave her as her primary support "safe" person. This new course of treatment will heal the parts of her physiology that are broken and the therapeutic interventions will support her in establishing new safe people, to give her the hope to go on another day, develop a plan for future hopes, dreams and goals. While other young adults are entering their second and third years of college, my daughter is barely able to decide if she wants to wake up to see another day.
Explain if there are other ways you need help: When a child is diagnosed with Leukemia, Cancer, or a brain tumor and a GoFundMe is created, I have witnessed (and participated in) the offers of respite and relief, home-cooked meals, empathetic support, babysitting, outings, breaks and flowers are (appropriately) part of that support. When your loved one has the disease of Mental Illness it's not something most understand even what to say or that their caregiver would appreciate the same depth of sympathy and support. A break: come sit with her, take her to the movies, to a meal, offer a ride, just listen to her without judgment or trying to fix her.
Tell potential donors how urgent your situation is:
As I paid for the first round of care, I reminded myself that I could have paid for funeral costs; but by the Grace of God I, instead, am paying for her psychiatric and psychological care, at great financial stress to our home (and her minor-aged brother); I also had to take a leave of absence from work in order to accommodate her care, daily doctor's appointments, therapy visits and to supervise her healing, while protecting her from herself.
It is humbling to share. It is difficult to ask. I have secured funds for her after my death, as well as a safe person to manage those funds. What I have is a daughter who is high functioning enough but far too young to die.
UPDATE February 2019: After a 5-day 72 hour hold (I know, I know it doesn't make sense... really, it happened), and multiple leave of absences from my own work, 4-6 months to wait for denial and rejection letters, red tape and emergency room visits while filing for appeals. The life of a caregiver for any condition is grueling and there are many days that I face the unknown while broke. Through my most recent experiences, I've come to learn there are hardly services for those suffering from disabilities or mental health issues, much less support for those of us care-taking them. Yet I also realized through the inspiration of a few, kind friends and family members, that where there is a need, it can be fulfilled - if you humble yourself and ask.
Since my ability to work has been spotty = at best - and we're living on borrowed time, with too many hours on 24/7 supervision and idle time on my hands, I have formulated a new nonprofit idea: to take care of the caregivers. I am currently fundraising for our future so my daughter and I can work hand-in-hand, side-by-side together for the remainder of our lives and to provide the excess to others in need.
I have a big dream, end game idea, but I'm saving that for my IRS 501(c)(3) filing...and it's all for the love of my daughter.
Organizador
Julie Marie Miller
Organizador
Fallbrook, CA
