Help Keep My Father Alive and Safe
Donation protected
On the evening of Friday, June 26, my sixty-six-year-old father showed up in front of my mother’s house in California’s Bay Area, 850 miles from his home in rural Washington, looking for me. At 6’2”, he weighed only 130 pounds, his clothes billowing around him like tents. The ubiquitous blue surgical mask he wore kept slipping down his gaunt cheeks, giving glimpses of a mouth missing numerous teeth. What few belongings he’d brought with him were carried in plastic shopping bags. My mother had come outside because she’d mistaken him for a homeless man and was concerned. It took a few moments of him talking for her to recognize her ex-husband.
My dad, Charles—or “Chuck,” as he prefers—suffers from Huntington’s Disease, a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. As the disease advances, it causes an unsteady gait and involuntary movements, slurred speech, difficulty in swallowing, significant weight loss, forgetfulness, impaired judgement, personality changes, mood swings, and depression. Weakened by all these symptoms, an individual with HD ultimately succumbs to pneumonia, heart failure, or other complications. There is no treatment, and there is no cure. It is described by the Huntington’s Disease Society of America as being like “having ALS, Parkinson’s, and Alzheimer’s—simultaneously.”
There is never a good time for a situation like this, but thanks to the current pandemic, I don’t know that there’s ever been a worse one. Right now, my father is dangerously underweight, having lost 90 pounds in less than a year. He spent that time living in a car, the small house he’d been occupying made uninhabitable by his own physical deterioration and his preexisting propensity for hoarding. He lost his ability to drive; to change his clothes unassisted; to clip his nails or trim his beard or bathe; to eat much of anything beyond yogurt, which he kept unrefrigerated in his vehicle. He managed to take some steps forward during this time, getting in touch with specialists at the University of Washington and starting the process of applying for public assistance. When he had his disability assessment, he said he hadn’t eaten for three weeks. He ended up in the hospital with severe kidney stones, and then again soon after that with an impacted bowel. He grew increasingly stubborn and suspicious, slowly rejecting his social workers, his doctors, his friends. He hit bureaucratic and personal roadblocks in his pursuit of care that stymied and frustrated him, feelings exacerbated by the increased irritability Huntington’s can bring. And then COVID-19 exploded, collapsing his meagre infrastructure and sending him into a spiral of desperation that would eventually land him on a bus to California.
Dad’s story is complicated; our relationship even more so. But what matters right now is that he is in crisis, he is someone I love, and he needs help.
WHERE IS CHUCK NOW?
Dad is currently in a motel not too far from where I live, and he’s there until Tuesday, July 7. Once check-out time hits that morning, he’s effectively homeless, which at this point—considering his vulnerability, his health, and the ongoing pandemic—is tantamount to a death sentence.
WHY DO YOU NEED MONEY?
Because I need time, and that time costs more than I am able to afford on my own. I need time to help Dad get authorized copies of some legal documents (his birth certificate being chief among them) so he can activate his Social Security and Medicare. I need time to reach out to the group homes in Washington to which his disability social worker had presented him as a candidate. I need time to build up his strength and spirit until he can be placed with people who are able to give him the care and supervision he requires. This is a process that could likely take months, and without the funds to pay for his room and board, he’ll be out on the street in a matter of days. I work at a non-profit theatre (where the specter of furlough looms closer every day thanks to COVID-19) and don't make much, and I also live in the most expensive region in the country. I am, to be frank, at the end of my financial rope.
HOW WILL THE MONEY BE USED?
First and foremost, NO cash will be given directly to my father. He is not in any shape to be managing his finances right now. The money will go to keeping him fed (at his stage of Huntington’s, and his low weight, he should be eating at least 4500 to 6000 calories a day) and in a motel until I can find safer, more appropriate housing for him. If that housing is in Washington or somewhere else outside the Bay Area, the money will help pay for gas and lodging on the trek there. If he needs to go to a hospital due to his condition worsening, the money will help with that. Most importantly (and most expensively), the money will then go towards paying for his room, board, and care at a skilled facility until I can get a more permanent financial situation set up for him through Social Security, Medicare, Medicaid, and whatever other public programs I can find. The good news is, some fantastic advocates had already gotten the ball rolling in that regard up where he was living, so we won’t be starting from nothing from a bureaucratic standpoint; it's just going to take time.
In the event of his death, the money will go towards final expenses. Any remaining funds will be donated in his memory to the Huntington’s Disease Society of America.
WHO ARE YOU IN CONTACT WITH IN WASHINGTON?
Over the last few days, I’ve spoken with Dad’s Huntington’s social worker from the University of Washington, one of the nurses who’s been working on his case, and his social worker from Washington’s Home and Community Services Division, all of whom have been so incredibly warm, supportive, and helpful. We all have the same end-goal for Dad, which is safety and care as this disease ramps up and ultimately takes him to the end of his life. Additionally, I’m in contact with a social worker based out of UCSF, who dove right in and walked me in detail through every possible scenario for immediate shelter for Dad while we try to figure things out (it was so heartening to hear confirmation that putting him in a motel was actually the very best thing to do, and that I should aim to keep him there for as long as I’m able). I’m also in contact with my family from Dad’s side of the tree, and I’ve been floored by their kindness and communicativeness considering I haven’t reached out to any of them with so much as a “hello” in decades. I share a lot of traits with my dad, including the stubborn devotion to some twisted concept of self-sufficiency, so asking for real help is very difficult for me; I always suspect that no one will care enough, or that I’m not a good enough or well-liked enough person to merit it. The last few days have brought me to tears regularly with how charitable virtual strangers have been on a number of levels.
WHY ARE YOU HELPING HIM?
I will not pretend my father is an easy man, or that our relationship has been a particularly healthy one. Intellectually brilliant, he’s been plagued by his own obstinacy and recalcitrance his whole life, born of mistrust of the world around him. He grew up in a deeply abusive household, believing he was neither loved nor wanted, and I know that that pain has rippled through every decision he’s ever made, though it doesn’t absolve him of the hurt he’s caused in turn. He’s pushed away crucial help in his belief that he knows best, left financial craters big and small in the lives of those close to him via business plans that work flawlessly on paper but not so much in the real world, and burned countless bridges due to his difficulty both in understanding other humans and making himself understood. As an adult, I’m now able to recognize the billboard-sized signs of undiagnosed mental conditions, outside of his Huntington’s, which likely contributed to his struggles (after speaking with one of his social workers, I am relieved to know I’m not the first to suspect some level of Aspergers/autism); but he wasn’t born into a generation where those things were widely tested for, much less understood.
He’s told me before that because of the way his parents treated him, he’d always vowed that when he had a child, he’d be the exact opposite. He was going to give that child all the love he had; they’d always know how special they were to him, how amazing, how important. And he did. I never questioned my dad’s love for me growing up, and I loved him just as fiercely; but his love became oppressive, especially after my mother divorced him when I was four. Though it wasn’t his intention, I was made to feel like I was all he had—the only star in his universe—and that’s a lot of pressure for a child, especially when the adult in the situation is modeling many dysfunctional behaviors in the other areas of their life. To him, everyone let him down eventually, nobody seemed to understand him, the whole world appeared bent on his unhappiness…with the unspoken, implied end of these conclusions being “except you, Heather.” I felt like I was supposed to save him. As time went on, I began to buckle under the weight of that responsibility, and sometime in my late teens I decided ignoring him was my best survival tactic, though it broke my heart. We spent the better part of the last twenty years estranged, which was my choice, not his. He continued to reach out long after I’d closed the lines of communication; sometimes angry, sometimes anguished, sometimes penitent, sometimes with lucid understanding, but always adamant in his love for me. He never missed a birthday or a Christmas. When the pleas for help started coming toward the end of last year, I ignored them too, out of fear of feeling crushed under that weight again. And I won’t lie, the past few days have been tough, to say the least.
Yet I also feel a great amount of relief. Though this is an agonizing situation, finally facing the fear I had of letting my father back into my life has opened a door in my brain that it was getting harder and harder to try and keep locked. There's a lot of pain there, but there's also such good. I can trace my sense of humor back to him, and my wit, and my intellectual curiosity, and my eloquence (and its evil twin, rambling verboseness); he is the source of some of my favorite parts of myself. As I took him grocery shopping this past evening, I found myself full of gratitude for this chance to let him know that I still loved him; to make dumb jokes with him again; to help him find the items he needed; to be able to gently assert boundaries in a way I couldn't before; to let him buy me yogurt I don't need because I know feeding me is one of the ways he expresses his affection; to share with him the ways he hurt me and to see him actually begin to understand; to hug him when we said goodbye. If he had died before now, I would have had to live with such a massive amount of regret. I know now that it is not my job to save him—in the end, he's going to have to save himself through the choices he makes in the coming days and weeks—but I do want to help him as best I can. And whatever the outcome, I'll at least have the peace of knowing that I met him with love; because everyone deserves to go into the end of their life girded by love.
If you made it this far, thank you, from the bottom of my heart. Whether you're able to give or not, I appreciate you just for being here with me. ❤️
My dad, Charles—or “Chuck,” as he prefers—suffers from Huntington’s Disease, a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. As the disease advances, it causes an unsteady gait and involuntary movements, slurred speech, difficulty in swallowing, significant weight loss, forgetfulness, impaired judgement, personality changes, mood swings, and depression. Weakened by all these symptoms, an individual with HD ultimately succumbs to pneumonia, heart failure, or other complications. There is no treatment, and there is no cure. It is described by the Huntington’s Disease Society of America as being like “having ALS, Parkinson’s, and Alzheimer’s—simultaneously.”
There is never a good time for a situation like this, but thanks to the current pandemic, I don’t know that there’s ever been a worse one. Right now, my father is dangerously underweight, having lost 90 pounds in less than a year. He spent that time living in a car, the small house he’d been occupying made uninhabitable by his own physical deterioration and his preexisting propensity for hoarding. He lost his ability to drive; to change his clothes unassisted; to clip his nails or trim his beard or bathe; to eat much of anything beyond yogurt, which he kept unrefrigerated in his vehicle. He managed to take some steps forward during this time, getting in touch with specialists at the University of Washington and starting the process of applying for public assistance. When he had his disability assessment, he said he hadn’t eaten for three weeks. He ended up in the hospital with severe kidney stones, and then again soon after that with an impacted bowel. He grew increasingly stubborn and suspicious, slowly rejecting his social workers, his doctors, his friends. He hit bureaucratic and personal roadblocks in his pursuit of care that stymied and frustrated him, feelings exacerbated by the increased irritability Huntington’s can bring. And then COVID-19 exploded, collapsing his meagre infrastructure and sending him into a spiral of desperation that would eventually land him on a bus to California.
Dad’s story is complicated; our relationship even more so. But what matters right now is that he is in crisis, he is someone I love, and he needs help.
WHERE IS CHUCK NOW?
Dad is currently in a motel not too far from where I live, and he’s there until Tuesday, July 7. Once check-out time hits that morning, he’s effectively homeless, which at this point—considering his vulnerability, his health, and the ongoing pandemic—is tantamount to a death sentence.
WHY DO YOU NEED MONEY?
Because I need time, and that time costs more than I am able to afford on my own. I need time to help Dad get authorized copies of some legal documents (his birth certificate being chief among them) so he can activate his Social Security and Medicare. I need time to reach out to the group homes in Washington to which his disability social worker had presented him as a candidate. I need time to build up his strength and spirit until he can be placed with people who are able to give him the care and supervision he requires. This is a process that could likely take months, and without the funds to pay for his room and board, he’ll be out on the street in a matter of days. I work at a non-profit theatre (where the specter of furlough looms closer every day thanks to COVID-19) and don't make much, and I also live in the most expensive region in the country. I am, to be frank, at the end of my financial rope.
HOW WILL THE MONEY BE USED?
First and foremost, NO cash will be given directly to my father. He is not in any shape to be managing his finances right now. The money will go to keeping him fed (at his stage of Huntington’s, and his low weight, he should be eating at least 4500 to 6000 calories a day) and in a motel until I can find safer, more appropriate housing for him. If that housing is in Washington or somewhere else outside the Bay Area, the money will help pay for gas and lodging on the trek there. If he needs to go to a hospital due to his condition worsening, the money will help with that. Most importantly (and most expensively), the money will then go towards paying for his room, board, and care at a skilled facility until I can get a more permanent financial situation set up for him through Social Security, Medicare, Medicaid, and whatever other public programs I can find. The good news is, some fantastic advocates had already gotten the ball rolling in that regard up where he was living, so we won’t be starting from nothing from a bureaucratic standpoint; it's just going to take time.
In the event of his death, the money will go towards final expenses. Any remaining funds will be donated in his memory to the Huntington’s Disease Society of America.
WHO ARE YOU IN CONTACT WITH IN WASHINGTON?
Over the last few days, I’ve spoken with Dad’s Huntington’s social worker from the University of Washington, one of the nurses who’s been working on his case, and his social worker from Washington’s Home and Community Services Division, all of whom have been so incredibly warm, supportive, and helpful. We all have the same end-goal for Dad, which is safety and care as this disease ramps up and ultimately takes him to the end of his life. Additionally, I’m in contact with a social worker based out of UCSF, who dove right in and walked me in detail through every possible scenario for immediate shelter for Dad while we try to figure things out (it was so heartening to hear confirmation that putting him in a motel was actually the very best thing to do, and that I should aim to keep him there for as long as I’m able). I’m also in contact with my family from Dad’s side of the tree, and I’ve been floored by their kindness and communicativeness considering I haven’t reached out to any of them with so much as a “hello” in decades. I share a lot of traits with my dad, including the stubborn devotion to some twisted concept of self-sufficiency, so asking for real help is very difficult for me; I always suspect that no one will care enough, or that I’m not a good enough or well-liked enough person to merit it. The last few days have brought me to tears regularly with how charitable virtual strangers have been on a number of levels.
WHY ARE YOU HELPING HIM?
I will not pretend my father is an easy man, or that our relationship has been a particularly healthy one. Intellectually brilliant, he’s been plagued by his own obstinacy and recalcitrance his whole life, born of mistrust of the world around him. He grew up in a deeply abusive household, believing he was neither loved nor wanted, and I know that that pain has rippled through every decision he’s ever made, though it doesn’t absolve him of the hurt he’s caused in turn. He’s pushed away crucial help in his belief that he knows best, left financial craters big and small in the lives of those close to him via business plans that work flawlessly on paper but not so much in the real world, and burned countless bridges due to his difficulty both in understanding other humans and making himself understood. As an adult, I’m now able to recognize the billboard-sized signs of undiagnosed mental conditions, outside of his Huntington’s, which likely contributed to his struggles (after speaking with one of his social workers, I am relieved to know I’m not the first to suspect some level of Aspergers/autism); but he wasn’t born into a generation where those things were widely tested for, much less understood.
He’s told me before that because of the way his parents treated him, he’d always vowed that when he had a child, he’d be the exact opposite. He was going to give that child all the love he had; they’d always know how special they were to him, how amazing, how important. And he did. I never questioned my dad’s love for me growing up, and I loved him just as fiercely; but his love became oppressive, especially after my mother divorced him when I was four. Though it wasn’t his intention, I was made to feel like I was all he had—the only star in his universe—and that’s a lot of pressure for a child, especially when the adult in the situation is modeling many dysfunctional behaviors in the other areas of their life. To him, everyone let him down eventually, nobody seemed to understand him, the whole world appeared bent on his unhappiness…with the unspoken, implied end of these conclusions being “except you, Heather.” I felt like I was supposed to save him. As time went on, I began to buckle under the weight of that responsibility, and sometime in my late teens I decided ignoring him was my best survival tactic, though it broke my heart. We spent the better part of the last twenty years estranged, which was my choice, not his. He continued to reach out long after I’d closed the lines of communication; sometimes angry, sometimes anguished, sometimes penitent, sometimes with lucid understanding, but always adamant in his love for me. He never missed a birthday or a Christmas. When the pleas for help started coming toward the end of last year, I ignored them too, out of fear of feeling crushed under that weight again. And I won’t lie, the past few days have been tough, to say the least.
Yet I also feel a great amount of relief. Though this is an agonizing situation, finally facing the fear I had of letting my father back into my life has opened a door in my brain that it was getting harder and harder to try and keep locked. There's a lot of pain there, but there's also such good. I can trace my sense of humor back to him, and my wit, and my intellectual curiosity, and my eloquence (and its evil twin, rambling verboseness); he is the source of some of my favorite parts of myself. As I took him grocery shopping this past evening, I found myself full of gratitude for this chance to let him know that I still loved him; to make dumb jokes with him again; to help him find the items he needed; to be able to gently assert boundaries in a way I couldn't before; to let him buy me yogurt I don't need because I know feeding me is one of the ways he expresses his affection; to share with him the ways he hurt me and to see him actually begin to understand; to hug him when we said goodbye. If he had died before now, I would have had to live with such a massive amount of regret. I know now that it is not my job to save him—in the end, he's going to have to save himself through the choices he makes in the coming days and weeks—but I do want to help him as best I can. And whatever the outcome, I'll at least have the peace of knowing that I met him with love; because everyone deserves to go into the end of their life girded by love.
If you made it this far, thank you, from the bottom of my heart. Whether you're able to give or not, I appreciate you just for being here with me. ❤️
Organizer
Heather Orth
Organizer
San Carlos, CA