Saturday, August 3, 2013

Caregiving Lecture Notes Part 1

I have a talk to give to the San Diego Brain Injury Foundation Saturday August 10th (10am) @ Scripps I'm going back and looking over my mental notes on caregiving and my experience with my husbands brain injury and later dementia. So here we go back in time:

Paul Williams Accident and brain injuryTime line:
1. Paul Williams falls off bicycle going down a hill in Encinitas April 15, 1995
2. Paramedics ask him questions and all he can say is "Paul"
3. He is taken to trauma center at Scripps Hospital and is taken into surgery within the hour
4. Both temporal lobes, on either side of his head are opened allowing the brain to swell. One side needs additional surgery with 5 centimeters of damaged brain being removed
5. This was the weekend of the Oklahoma City bombing and Christopher Reeve's spine injury. I sat in the waiting room for hours, awaiting word on Paul while images of these news stories played over and over on the hospital tv
6. I wasn't married to Paul at the time and the doctor had to make special accommodations so I could be with Paul in the ICU
7. He improved every day. At the end of the first week his brain surgeon said to me: "He could end up like Ronald Reagan" I wasn't sure if that meant: Republican, President or dementia
8. He was sent to Kaiser Hospital after 2 weeks in trauma ward at Scripps. This meant he was improving and now downgraded to "stable condition"
9. After two weeks of Kaiser he was sent to Sharp's Rehab Hospital for Spine and Brain Injury and lived there for a month
10. Paul was then sent home with me and received several months of outpatient rehab from Sharps.

Once Paul was considered by his doctors beyond the point of needing further rehabilitation from the hospital and then the rehab hospital, and then the outpatient rehab,  he was then released to me, and himself and was deemed 'Okay' to be on his own and back in society.

The problem with this was he wasn't quite okay:
1. his emotions were all over the map
2. he was a terrible driver with a large swath of blind spot
3. he was unpredictable

Pick your battles, know what you can live with and what are the deal breakers:

In regards to the bad driving I tried to get his doctor to tell the DMV that he needed to be tested before he could drive again. He didn't agree. I couldn't believe it, I was on my own with my concerns. So,  I went to see a therapist from our health care provider who said to me:
" Well, look at it like this. There are a lot of old folks out there that shouldn't be driving either,
make peace with it, there's nothing you can do about it." Her suggestion was I should suck it up and take it, and I suppose, be willing to get into an accident." I decided to tell Paul I was not comfortable with his "blind spot" while driving and said I needed to drive for "my own comfort" and that " it was my own issue".  He accepted this as my problem, though on occasion he would bring it up again as a problem that "we" had.

The good news was Paul was able to get right back into writing books and doing lecture tours and editing other writers for his subscription rock newsletter Crawdaddy. He also started a new and good paying job, editing the pop music section for a hifi afficionados magazine. He was offered the job within days of getting from from the hospital. He also bought a brand new computer and got to work on transferring files.

It was a miraculous recovery. Within 3 months of the injury he was at a book sellers convention, as he did each year, meeting with agents and talking about his books. Five months after the injury he went on a lecture tour in Europe, talking very educatedly and with enthusiasm about the work of Bob Dylan. I couldn't have stopped him from doing these things if I'd wanted to, and his doctors and nurses did try to stop him from traveling. That wasn't going to happen. So I went along as 'handler'.

Years went by, 8 years, with more books written by Paul. He was still very good at multi-tasking and had 3 or 4 projects going on simultaneously. Writing articles, editing the complete works of Theodore Sturgeon, fielding questions and doing interviews about his late great famous friend and writer Philip K Dick and on and on....He was doing very well, (even with the bad driving).

Paul went back to writing books and articles and multi-tasking and doing lectures, there is a chance your loved one could change yet again.


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 in the series... 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 just 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 a little baby.

I don't want to be a prophet of doom here, not everyone with a brain injury goes down the path that my husband did, (Paul had a very very serious brain injury that required the removal of 5 centimeters of grey matter), and my hopes and prayers are that yours do not. But 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 that made him feel extremely disoriented. Many days 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 that it's common knowledge that tbi can sometimes lead to dementia or Parkinson's but from 2004-20010 that wan't the case and we, including the doctors 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 we met with an official, they saw Paul and he was accepted.

Another good thing that worked in our favor was bankruptcy. Im relatively certain now that Paul knew something was not right with him back in 2002 and he pushed on the idea of us going into bankruptcy. He had a huge debt, nearly $50,000. that I was unaware of. As it turned out many of the years after the brain injury he had not being 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.

I wish that I'd known ahead of time, I think I would have been more proactive about laying the ground work for being a single-mom and getting ahold of our finances before things spun out of control.

I was not one of those women that naturally takes ahold of the family budget and 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 letters to him were scattered on the office floor.

Internet, phone use and credit cards ( elder abuse issue) Wish I had seen this coming so I could have cut off the credit cards earlier, or PayPal accounts etc. Start separating or taking control over family finances.

Coming out of denial that something was going the wrong direction with Paul's brain was hard for me, but it all came down in 2004. He had a car accident with our 2 year old on board, rear ending another vehicle that was stopped at a red light. And then a month later he bit that 2 year olds arm trying to get the boy to stop interrupting his work on the taxes.

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

Segueing From Spouse to Caregiver: 

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 a daunting enterprise but it's possible. Just keep your head and find a support group.

For me, I found friends to be very 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 group earlier. Eventually I went back to a 12 Step Program I'd been in years before. It would have helped if I'd gotten back to it during the 'breaking the denial' time of the mid 2000s. 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 and be a warrior for my family.

I found a few resources useful at this time. One was the Southern Caregiver's Resource Center. 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
2. Honor your feelings and make time for them
3. Know when you are reaching your caregiving limits

When It's Time To ASk For Help

By 2009 I couldn't take care of Paul properly any longer. Alexander and I could rarely get away anymore without being afraid Paul would catch the kitchen on 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 make enough money to keep this up and I couldn't handle this for long...

Nursing Homes: Making the Big Decision, lying, coniving and getting what you need
Now I cried at nights knowing that I had to get Paul into a nursing home. But making the decision was not the toughest part....finding a nursing home that would take a 60 year old man that could still walk was maybe the biggest challenge yet. I hope you don't get to this place with your loved one for many many years.  But if you do, know that others have been there too.

You may have long-term health insurance for your loved one. We didn't, who thinks they need it when they're 30 or 40 or 50.
So I needed to separate my finances from my husbands. I needed to close his credit cards and all but one bank account that could have no more than $2000 a month in it. I decided I needed help so dear friends and fans of Paul's came together and started a donation fund so we could have funds to pay for an attorney to settle Paul's affairs, get an official will made and get Paul on the MediCaid program and get him into a nursing home.

Here are some things I learned about getting into a nursing home:

1. Find a few nursing homes you can "live with"
I needed one that was in our neighborhood in Encinitas and was clean and I
could take my young son to
2. If your loved one is in the hospital it's WAY easier to get them straight into a home and you can avoid most of the problems I encountered. But Paul was physically healthy and that was a problem.
3. The nursing homes will have a lot of reasons why they can't take your loved one:
"too young, everyone here is elderly", " we have very few men", "he walks, so is at risk to leave", "we don't have any beds available and rarely do", "we hardly ever take a new MediCal patient"
Don't accept any of these rejections, keep coming back

This is what I did:
1. I charmed them with articles about Paul, I showed them an article on him in Rolling Stone and a donation check from Yoko Ono for his care
2. I finally figured out you can't tell them you are getting him on MediCaid. They don't want more MediCal/MediCaid patients cuz the nursing home gets paid a lot less for them...
3. I LIED: (my parents taught me not to lie. But sometimes, like this, you need to) I told the nursing home that we changed our mind and were not going for MediCaid, we were gonna be Private Pay and that all the copious donations for Pauls care had made that possible. I really only had enough dough to pay for 3 months of Private Pay at $7000 a month, but they didn't know that. I told them I'd pay for the first 3 months up front. And you know what, within 24 hours a bed in the good side of the nursing home suddenly became available. Paul was in. Within a few weeks my attorney instructed me to tell them Paul was MediCal/Caid pending and not pay them any more money. Done. He was in.
4. They were not happy that I tricked them so they told me he couldn't stay because he could walk and was at risk for leaving, they said he'd already tried to go out the emergency exit. I knew it wasnt true because he was so far in his dementia he thought he was at home all along. I brought in an Ombudsman that helped me stand up to the nursing home and Paul was in for the long haul

Visiting The Nursing Home:
Losing their care...letting go of his care and knowing he's not getting the help he needs....tougher earlier when he needed mental stimulation, puzzles and cards and exercise

....more to come...


  1. Wonderful description and so close to home for myself. My wife has Huntington's Disease (Woody Guthrie died from it) and we are, I'm guessing, half way through the disease. On the one hand I think I know what is coming. But on the other hand I don't know from one day to the next. When I could go to my support group they would say "once you have seen a person with Huntington's ... You've seen one person with Huntington's." Everyone is going through something different or at a different stage. It sounds like this is true with tbi. Best of luck with your talk. I am a recent fan of some of your songs and started following you on Facebook and didn't realize there is this sort of connection. Best. Peter Lehndorff

  2. There is NO SUCH THING AS A "GOOD" NURSING HOME anywhere in the State of California. They are 21st Century "Concentration Camps" that abuse and get away with harming and killing our most vulnerable population! Nursing Home residents are treated no better than Factory Farm Animals. The State Officials that are "in place" to "protect" nursing home residents are paid off by the wealthy investors that own Nursing Homes. It is a corrupt, evil system that ultimately harmed and killed my own Mother. If I knew half then what I know now, I would have put every penny I had on the line, even leave this Country to make sure my Mother never spent one minute in a U.S. Nursing Home. They routinely get away with murder....

  3. Cindy... this heartbreaking story really needs to be shared widely.... I know that there are so many folks that can be helped by your insights and details....

  4. As a 60's member of the Galley Bay commune, I appreciate Paul's contributions (and yours in turn).

  5. Great post! Keep the excellent content about caregiving coming our way!