Thursday, May 29, 2014


The grouchy face of an overworked, overtired caregiver
Paul and I at the beautiful San Elijo Lagoon 2007 (photo by 5 year old Alexander)

The following is another piece from my talk at the California Brain Injury Assoc. conference

From Spouse to Saint=No Fun Zone:
The rest of this story is about me landing on the ground....taking things one day at a time, becoming a responsible adult that could work and make a living, take care of Paul and our young son and find some time for myself. It's was a daunting enterprise.

I found friends to be extremely helpful. As things with Paul worsened some friends went away and some came closer. In retrospect I wish I'd gotten myself into some kind of therapy or self help group earlier. Eventually I went back to a 12 Step Program I'd been in years before, Alanon, which became very helpful. I needed a place to put my anger and sadness. I felt like I had to 'buck up' suck it up, and take it all on, and be a warrior for my family.

Eventually I found a few helpful resources. One was the Southern Caregiver's Resource Center in San Diego. I arranged a meeting and told the social worker my story. We talked about what she called Caregiver's Burnout. She made me feel okay about what all I'd done so far by saying "Some caregiver's in your position would have given up a while ago, and some could go longer. It all depends on what you can handle and only you will know your limits". She helped me get onto a temporary program called Caregiver's Respite Time and the State of California paid for Paul to go into a very nice and nearby Alzheimer's care facility for 12 days. It was a lovely place, they sewed his name into every shirt and pair of trousers he came in with. And it was heaven for me, and Alexander to be free to drive out of town, or just hang out somewhere besides home for hours at a time.

Avoiding Caregivers Burnout:
1. Make time for yourself (steal it wherever, whenever you can)
2. Honor your feelings and make time for them
3. Know when you are reaching your caregiving limits
4. HALT: don't let yourself get too- hungry, angry, lonely, tired
When It's Time To Ask For Help

By 2009 I could no longer take care of Paul. Our son Alexander and I could rarely get away and Paul was not easy to take out of the home. It was dangerous leaving him alone, for fear he might start a fire.

He did indeed start an oven fire when we were away for a day even with our neighbor looking in on him every hour, Paul put a pan in the oven with oil in it, the apartment alarms went off and when we got home our neighbor was spooning oil out of the bottom of the oven.

I rallied a little money from Paul's family and used some savings and hired a full time "baby" sitter to stay with Paul while I was at work. It was expensive. I didn't have enough, nor make enough money to keep this up and I couldn't handle this for long...

San Elijo Lagoon w Paul and Alexander 2007

*      *      *

And a memorial thank you to this kind hearted friend from our church who watched Paul and Alexander on numerous occasions, just to give me a little sanity break. Bless you dear friend, Heidi Salomone.

Monday, May 26, 2014


The following is a selection from the talk I gave at the conference for the Calif. Brain Injury Association May 15th

Paul receiving physical therapy 2 months after his brain injury

We had a baby in 2001, Paul turned in his latest book on the work of Bob Dylan and began writing on a new book ... Around this time he began to have anxiety attacks and sometimes he felt the room spinning in a vertigo kind of way. He began to walk slower and sometimes he would talk a little bit slower. It was not very noticeable at first. I thought, it could be he feels like me, I'm tired all the time from taking care of our new baby.

Some folks that acquire a brain injury or multiple concussions can later begin to show signs of a new problem. For Paul, just as he was improving on all fronts he began to have severe anxiety attacks and off days. Sometimes he would say to me "my brain feels really fuzzy today" or "I'll drink coffee to get out of this fuzzy-brain feeling". In retrospect, I believe, it was the beginning of early onset of dementia due to his traumatic brain injury.

Things have changed much now that multiple football players have donated their injured brains to science and there has been a paradigm shift in understanding, it's common knowledge now, that tbi can sometimes lead to dementia or Parkinson's. Just last year, 2013, while at a talk by a scientist, Yimin Zou, on brain and spinal cord research I got my answer as to what happened to Paul’s brain: The initial break in the neurotransmitter highways is called a traumatic brain injury, but the subsequent retraction of the microfibers called Axons, worsens the ability of electrical impulses to get around the brain.

But in 2004, we, the doctors and I, didn't know what was going on with Paul.

Paul tried numerous anti-depressants, some drug for Parkinson's, some other drugs like Neuronton that are supposed to stimulate the brain. Nothing helped. As time went by, over a period of about 2 years, he became less steady on his feet, talked much less, couldn't remember where we had stopped reading in the book we were reading aloud together. But the biggest difference in him was he began to write less and his office became strewn with papers and unfinished bits of things and with many unopened letters and unpaid bills....


I am grateful that a friend had told me years earlier that if I was going to get Paul on social security disability that I would need an attorney. He was right, even the attorney's request was turned down by social security the first time through. The next time he was accepted.

Another good thing that worked in our favor was we’d filed for bankruptcy before Paul’s dementia set in. I’m relatively certain now that Paul knew something was not right with him back in 2002 and he pushed me on the idea of us going into bankruptcy. He had a huge debt, nearly $50,000. I had been unaware of. As it turned out, many of the years after the brain injury he had not been making as much money as he had before, and so began using the credit card for basic living expenses. I'm thankful this problem came to light while he could still fill out forms and make decisions. It was, I believe now, a gift from Paul while he still thinking clearly.

I was not one of those women that naturally takes ahold of the family budget and financial responsibilities, I'm a musician after all, so when it became clear that Paul was not capable of paying and keeping track of our bills, I lurched out of denial kicking and screaming. Fortunately Paul had been an extremely organized record keeper up until the point where he no longer could. Now most our bills and his writings and mail were scattered on the office floor.
I wish I had seen the dementia coming so I could have cut off the credit cards earlier, the PayPal accounts, limited his time on the internet, because he was signing up for things on line that cost thousands of dollars or getting scammed in all numbers of ways. Including by telephone. I had to undo a number of these and it wasn’t easy.

Coming out of denial, that something was going wrong with Paul's brain, was hard for me. But bigger problems started to arise. He had a car accident with our 2 year old on board, rear ending another vehicle that was stopped at a red light, Paul’s fault. And then a month later he bit our 2 year olds arm trying to get the boy to stop interrupting him while working on the taxes.

I hadn't been prepared for this, no one told me that things could go the other way, that things could get worse, the rehab, the doctors, the nurses had said things would just keep improving...

Friday, May 16, 2014

Speaking at the California Endowment Center in LA for the Calif Brain Injury Assoc.

When I arrived in downtown LA yesterday it was 106 degrees. Paula came in an hour later around 2pm and her car told her 110. It was crazy hot. Meanwhile, I wasn't sure what traffic would be like heading out of San Diego; the day before part of Fwy 5 had been closed because of the Tomahawk Fire at Camp Pendelton. So I left a lot of time for possible fire mishaps. 

It was weird coming in from San Diego, where we've been living the apocalypse, checking Twitter compulsively for fire updates, and just a little bit north, aside from hot weather, every thing was la-dee-dah, normal. 

We played some songs

I told my story

And my longtime pal Dr Paula Luber gave a medical perspective and some tips for being proactive with brain injury health care. 

During the final Q+A an audience member asked if Pauls family had a DNA propensity for dementia and if that was why after initially recovering from the brain injury, rather miraculously, he fell into dementia.

The truth is that Paul, like many football players that have donated their brains to science, acquired his dementia in his mid 50s because of the TBI. Just as those football players that had multiple concussions had. Paul's mother lived well into her 80s and only started to show dementia in her last year. Paul's father began to show Alzheimers in his mid 80s, which is relatively normal. Paul was 54 when it became obvious something was very wrong and eventually he was medically deemed: Early Onset of Demetia Due to A Brain Injury. 

It's very cathartic being able to share my story. While reading it through yesterday, I thought; how the hell did I live through this? Many of the folks in the audience were caregivers and I could pretty much guess what they're going through. One woman said to me "Friends tell you, 'you take care of yourself', and they wag that finger. Well how am I supposed to do that when my husband needs full time care?" 

One of the stories I told was how I let myself get so beat down by the caregiving and the worry and that at it's most climactic, when I decided it was time to find a nursing home for Paul, I would cry myself to sleep. I'd think, it's 10pm now, I have to get my son up for school at 7am. I have about 45 minutes to cry right now. Then I'd shut it off and make myself go to sleep. After a week of that it backfired. I was awoken at 4am by my heart, which was beating over 200 beats per minute. I was having an SVT: Supraventricular Tachiacardia. I called 911 and had to go to the hospital. I thought I was gonna die. Turned out SVT's are relatively benign, there were things I could do to bring my heart rate down (like plunge my face in a bowl of water and ice, shocking the heart back into a normal rate). I could live with this.

The point is, I'd reached my nadir, the lowest point on my caregiving trajectory and it was time to turn over the reins to caregiving professionals and find away back into self care; like exercise, time alone, creativity, 
fun stuff...

It was a real honor being able to talk to the California Brain Injury Assoc. conference,  to a group of men and women that have been down some similar paths to my own story. Though mine is a cautionary tale, I hope in some small way I was of help to those still living with their own beloved stranger.

Monday, May 12, 2014

Love, Brain Injury & Early-Onset Dementia: A Caregivers Tale

This Thursday I will be giving a talk, in Los Angeles, on my experience with a brain injured spouse and all things related, plus a little music. I'm excited and a little nervous. Fortunately my good friend Paula will accompany me with some glockenspiel and some words on brain injury from a medical perspective

4th Annual Statewide Conference
Acquired Traumtic Brain Injury
Resources and Pathway To Brain Injury Recovery
Thursday May 15th 2014

The California Endowment Center
1000 N. Alameda St.
Los Angeles, CA 90012

Love, Brain Injury & Early-Onset Dementia: A Caregivers Tale
Cindy Lee Berryhill, Caregiver, Singer-Songwriter/Performer & Paula Luber, M.D. 

On behalf of the Brain Injury Association of California (BIACAL), you are invited to attend the 4th Annual Statewide Conference on ATBI: Resources & Pathways to Brain Injury Recovery, Thursday, May 15th at the California Endowment Center in Los Angeles. 

This conference is designed for persons with brain injury, caregivers, family members, educators and medical professionals.  

Thursday, May 1, 2014

Mother Marilyn

We were lying there on a futon bed, with a red blanket, when I asked her, "What do you do if there is a man in your life that has you on a pedestal or anyways, they don't see who you really are?" She moved her pale naked body into a new position, a position to talk from. "Well, you just ignore that, and you go on."

Ignore it? I thought about that. But, I argued with myself, the guy thinks I'm so much more than I really am.  She of all people should understand this. Maybe no woman was idolized as much as she, since the 1950s forward. And the truth is we, she and I, didn't really have much in common, our blond hair, and something else...

"So, you're saying, ignore it, ...even while he is going overboard with being of service. I mean, this guy, by the way he looks like John Watson on the show Sherlock...come to think of it he acts like that too. You know the way John is pretty much in love with Sherlock and will do any and every thing for him?"

"Some men operate that way" she said cooly. "Come here put your head on my chest" We were under the red softness of blanket together now, bodies touching, I laid my head down on her bare breast.

"Its nice, like pillows" I said, still considering the first half of the dream with the Watson-like fellow. "There, there" she said and patted my head. She was so wonderfully motherly. Like the mother I'd lost so long ago. The blond hair, the softness, the gentle way of speaking. But Marilyn Monroe had had her loss of a mother as well. That was the only real thing we had in common, but it was everything. We that lost a parent as a child limp through life with an invisible crutch, a crutch called 'show-biz'. It' all about the presentation. Appearing okay.

Being held by her, with such gentleness, I allowed myself to be a child again and to be nourished by loving touch.  We had both had terrible loses in our youth. Some kids do, some don't. I met a man a week ago, he came up to me after a show and said "you know I lost my father when I was 15, I just....It was so ..." he couldn't finish the sentence, his breath smelled of many beers. "I understand, it's the loss that never goes away". "That's it" he said and wiped an eye.

We all have losses eventually, we kids just got there early. I have a song that goes:
One thing I figured out a long time ago, when the hurtin' starts young it looks like everyone you'll know. 

I awoke from the dream feeling comforted. I think it's our job in life, to comfort our 8 year old that's still afraid of the big people world, the child inside of us. And it's also our place to nurture our own adult cindy lee, so we can be compassionate and open and empathetic to our little cindy lee, and of course, to her friends.

Happy May Day to you my friends...