It Takes Paul's Village ❤️
Donation protected
Dear friends and family and people who seem like both…
I’ve tried to write this story of What Happened and What We Need several times, but it’s the hardest thing I’ve ever tried to say. Have decided to just scrap all previous attempts and spell out the truth of what this crisis has meant to Paul and to me, and to our lives. It’s 4:30 AM, Paul is asleep in the next room, and my head is semi-clear...
The background:
On Feb15th, my sweet, funny, brilliant husband Paul Jacobs, my partner in life and in songwriting (Sesame Street, Between the Lions, children's musicals, rock) for over 40 years, had a very serious heart attack. Heroic people performed CPR, he was treated by EMTs at the scene, then rushed to NY Presbyterian Hospital, one of the best cardiac units in the world. Surgery to repair his arteries and put in stents was 100% successful. His time in the ICU was incredibly harrowing. Everyone who has ever endured seeing what people go through in ICUs can relate to how that phase felt. There are agonizing questions about consciousness, basic functioning… the bleak, middle-of-the-night question that hovered over all the rest for me in that first week was: “Will he recover enough to be glad he survived?”
Fast forward… as the weeks passed in the hospital, his progress seemed miraculous! The updates I was posting on Facebook started brimming with positive stuff. He can talk! He can swallow applesauce! He remembered our names! He can walk! The outpouring of concern, then the cheering and love and support of all our friends and family, has been so overwhelmingly beautiful. It has held me up every day. It still does. And anything seemed possible.
Another fast forward… he moved on to acute rehab at Mt. Sinai. He had daily physical therapy, occupational therapy, speech therapy. It is an amazing place, he was so lucky to get that quality of care. But these were the weeks when the severity of his cognitive and memory deficits became much clearer.
There are many kinds of traumatic brain injury. Paul’s is defined as “Anoxic Brain Injury”, meaning, the damage his brain suffered from prolonged oxygen deprivation during his cardiac arrest. He also suffered a stroke, and the additional impacts from that have only recently started being clarified for me.
Here’s where there’s no easy way to describe the effect this has all had on his functioning. It’s so complex. There’s SO MUCH TO CELEBRATE about his current status, the incredible progress he’s made in two short months. I’ll just list the happy miracles first, because finding joy is kinda how we roll in our family:
First, his personality is completely intact. The smart, funny Paul Jacobs we know and love is still that same guy. He can talk, expressively. He can read, write, engage with people. He is also so deeply grateful for his life and the people he loves, so easily moved to tears by it all, just… awash in feelings.
Yes, he does seem deeply happy to be alive.
And the most joyous, astounding fact of all: he didn’t lose his musical ability. The moment he finally sat at a piano at the Actors Fund Home and music started pouring out of him was just sheer, blubbering joy. Miraculous. Music is in his core self, and it never left his brain or his hands. Guitar, too. He isn’t back to the same level, but if he wants to be, I have total confidence he could get there. I can imagine him being able to get back to some teaching, and in my dreams, we'll someday even be able to write songs together again.
Now for the things that are hard to say, and hard to see.
There’s no way to overstate the devastating impact of memory loss. For Paul, the thing that took the biggest hit is his short term memory. It is virtually nonexistent, which makes daily tasks a challenge and independent living impossible for him. The basic facts of where he is, who people are, what he needs to do to be safe, all need to be repeated many times a day. His ability to learn, basically, has been severely compromised.
There is an alarm on our door. There’s a whiteboard reminding him what day it is, the simple plans and activities to expect. Those of you who care for family members with dementia understand very well what our life is like these days.
There’s mental confusion, some obsessive thinking, and a blurred line between fact and fantasy. I’m awake this morning because he suddenly shared his concern that “the tracks aren’t finalized yet”. What tracks, I asked? The Abbey Road tracks, he said. He continued with talk that made me realize he currently believes he wrote things for the Beatles. Further, that he and I were AT the Abbey Road studios at that moment, despite the evidence that we were in our bed in our NYC apartment. He can be made to accept correction, but it’s not easy.
At other moments, he’s completely lucid. Some phonecalls with friends and family have made them weep with delight that he’s totally himself. Five minutes later, he has forgotten the call.
It’s really important to remember that unlike Alzheimers and other kinds of dementia, traumatic brain injuries GET BETTER. The brain is a fascinating, incredibly agile and creative organ. And he’s a musician :)! There are neural pathways in there that are already dazzling. He’ll be using them to heal, to re-route and retain information in other areas. His speech therapists agree, enthusiastically, that this will be a big factor in his recovery.
And now for his physical status…
He can walk, but his brain injury affected his gait in ways that put him at great risk of falling. His knees can suddenly just buckle with no warning and he goes down. It doesn’t happen often, but often enough so that it's a constant worry and he’s only allowed to go out if he's in a transport chair (meaning, pushed by me) for his own safety. We have lots of followup appointments coming up, and will maybe get some answers about why this leg-weakness happens. It may be neurological. Otherwise, he can walk when he’s in our apartment, and he’s doing well in physical therapy!
Which brings me to the point of this overlong, beseeching GoFundMe.
We have insurance coverage for ongoing physical, occupational and speech therapies, first at home, then as an outpatient. They’ll help him a lot, a few hours a week. But...
The care that is NOT covered by our insurance will be wildly important for us and wildly expensive, and truth be told, I am panicking.
He needs 24 hrs a day of supervision.
I'm his primary caregiver. I feel really lucky to have the time and energy to fill that role for him, but it would be insane for me to think I won’t need a whole lot of help.
I've decided 25 hours a week of paid home care for Paul will give him what he needs and the respite care that I'll need. Not just for me to be able to do the daily things that need doing, but also to simply breathe, keep it together.
100 hours a month of home care help at $20/hr is a sudden new expense of $2000/month that we just don’t have.
I'm told it will take about a year for Paul's healing to progress to whatever his new normal will be. Knowing him, his recovery might be spectacular! But I've also been told to prepare for the possibility that it might be pretty minimal. Which I can barely bring myself to even consider. But I’m a realist. A realistic Pollyanna. A Reallyanna. You get it.
If you can help us, we urgently need it. Most people who are seeing this have already helped us beyond words by simply being there for us, full of such kindness, such wise advice… asking for more than that feels greedy. But oh man, oh BOY will we need all the financial help we can get in this coming year.
Thank you so much for reading all this, for being the “wings beneath my wind”, as I’ve been known to say about my tendency to say too much and too often :). Just thank you. I can’t wait to be able to give you updates about Paul’s continuing adventures in recovery. I promise there’ll be many more things to celebrate! He is already a hero.
With so much love, endless gratitude,
Sarah, Paul, Ruby and Julia ❤️
I’ve tried to write this story of What Happened and What We Need several times, but it’s the hardest thing I’ve ever tried to say. Have decided to just scrap all previous attempts and spell out the truth of what this crisis has meant to Paul and to me, and to our lives. It’s 4:30 AM, Paul is asleep in the next room, and my head is semi-clear...
The background:
On Feb15th, my sweet, funny, brilliant husband Paul Jacobs, my partner in life and in songwriting (Sesame Street, Between the Lions, children's musicals, rock) for over 40 years, had a very serious heart attack. Heroic people performed CPR, he was treated by EMTs at the scene, then rushed to NY Presbyterian Hospital, one of the best cardiac units in the world. Surgery to repair his arteries and put in stents was 100% successful. His time in the ICU was incredibly harrowing. Everyone who has ever endured seeing what people go through in ICUs can relate to how that phase felt. There are agonizing questions about consciousness, basic functioning… the bleak, middle-of-the-night question that hovered over all the rest for me in that first week was: “Will he recover enough to be glad he survived?”
Fast forward… as the weeks passed in the hospital, his progress seemed miraculous! The updates I was posting on Facebook started brimming with positive stuff. He can talk! He can swallow applesauce! He remembered our names! He can walk! The outpouring of concern, then the cheering and love and support of all our friends and family, has been so overwhelmingly beautiful. It has held me up every day. It still does. And anything seemed possible.
Another fast forward… he moved on to acute rehab at Mt. Sinai. He had daily physical therapy, occupational therapy, speech therapy. It is an amazing place, he was so lucky to get that quality of care. But these were the weeks when the severity of his cognitive and memory deficits became much clearer.
There are many kinds of traumatic brain injury. Paul’s is defined as “Anoxic Brain Injury”, meaning, the damage his brain suffered from prolonged oxygen deprivation during his cardiac arrest. He also suffered a stroke, and the additional impacts from that have only recently started being clarified for me.
Here’s where there’s no easy way to describe the effect this has all had on his functioning. It’s so complex. There’s SO MUCH TO CELEBRATE about his current status, the incredible progress he’s made in two short months. I’ll just list the happy miracles first, because finding joy is kinda how we roll in our family:
First, his personality is completely intact. The smart, funny Paul Jacobs we know and love is still that same guy. He can talk, expressively. He can read, write, engage with people. He is also so deeply grateful for his life and the people he loves, so easily moved to tears by it all, just… awash in feelings.
Yes, he does seem deeply happy to be alive.
And the most joyous, astounding fact of all: he didn’t lose his musical ability. The moment he finally sat at a piano at the Actors Fund Home and music started pouring out of him was just sheer, blubbering joy. Miraculous. Music is in his core self, and it never left his brain or his hands. Guitar, too. He isn’t back to the same level, but if he wants to be, I have total confidence he could get there. I can imagine him being able to get back to some teaching, and in my dreams, we'll someday even be able to write songs together again.
Now for the things that are hard to say, and hard to see.
There’s no way to overstate the devastating impact of memory loss. For Paul, the thing that took the biggest hit is his short term memory. It is virtually nonexistent, which makes daily tasks a challenge and independent living impossible for him. The basic facts of where he is, who people are, what he needs to do to be safe, all need to be repeated many times a day. His ability to learn, basically, has been severely compromised.
There is an alarm on our door. There’s a whiteboard reminding him what day it is, the simple plans and activities to expect. Those of you who care for family members with dementia understand very well what our life is like these days.
There’s mental confusion, some obsessive thinking, and a blurred line between fact and fantasy. I’m awake this morning because he suddenly shared his concern that “the tracks aren’t finalized yet”. What tracks, I asked? The Abbey Road tracks, he said. He continued with talk that made me realize he currently believes he wrote things for the Beatles. Further, that he and I were AT the Abbey Road studios at that moment, despite the evidence that we were in our bed in our NYC apartment. He can be made to accept correction, but it’s not easy.
At other moments, he’s completely lucid. Some phonecalls with friends and family have made them weep with delight that he’s totally himself. Five minutes later, he has forgotten the call.
It’s really important to remember that unlike Alzheimers and other kinds of dementia, traumatic brain injuries GET BETTER. The brain is a fascinating, incredibly agile and creative organ. And he’s a musician :)! There are neural pathways in there that are already dazzling. He’ll be using them to heal, to re-route and retain information in other areas. His speech therapists agree, enthusiastically, that this will be a big factor in his recovery.
And now for his physical status…
He can walk, but his brain injury affected his gait in ways that put him at great risk of falling. His knees can suddenly just buckle with no warning and he goes down. It doesn’t happen often, but often enough so that it's a constant worry and he’s only allowed to go out if he's in a transport chair (meaning, pushed by me) for his own safety. We have lots of followup appointments coming up, and will maybe get some answers about why this leg-weakness happens. It may be neurological. Otherwise, he can walk when he’s in our apartment, and he’s doing well in physical therapy!
Which brings me to the point of this overlong, beseeching GoFundMe.
We have insurance coverage for ongoing physical, occupational and speech therapies, first at home, then as an outpatient. They’ll help him a lot, a few hours a week. But...
The care that is NOT covered by our insurance will be wildly important for us and wildly expensive, and truth be told, I am panicking.
He needs 24 hrs a day of supervision.
I'm his primary caregiver. I feel really lucky to have the time and energy to fill that role for him, but it would be insane for me to think I won’t need a whole lot of help.
I've decided 25 hours a week of paid home care for Paul will give him what he needs and the respite care that I'll need. Not just for me to be able to do the daily things that need doing, but also to simply breathe, keep it together.
100 hours a month of home care help at $20/hr is a sudden new expense of $2000/month that we just don’t have.
I'm told it will take about a year for Paul's healing to progress to whatever his new normal will be. Knowing him, his recovery might be spectacular! But I've also been told to prepare for the possibility that it might be pretty minimal. Which I can barely bring myself to even consider. But I’m a realist. A realistic Pollyanna. A Reallyanna. You get it.
If you can help us, we urgently need it. Most people who are seeing this have already helped us beyond words by simply being there for us, full of such kindness, such wise advice… asking for more than that feels greedy. But oh man, oh BOY will we need all the financial help we can get in this coming year.
Thank you so much for reading all this, for being the “wings beneath my wind”, as I’ve been known to say about my tendency to say too much and too often :). Just thank you. I can’t wait to be able to give you updates about Paul’s continuing adventures in recovery. I promise there’ll be many more things to celebrate! He is already a hero.
With so much love, endless gratitude,
Sarah, Paul, Ruby and Julia ❤️
Organizer
Sarah Durkee
Organizer
New York, NY