Chapter 1 Seeing the White Rabbit

It began about 13 years ago, in 2001.  Something felt different.  My husband didn't see it coming, but I did.  In 2002, at the age of 51, he was given the option to resign or be fired from a position he held for eighteen years as a case worker.  He was blindsided.  But he quickly found another job in the social services field, only to be let go three months later.  He couldn't find a job after that - how do you put that on a resume?  He worked a seasonal job at Target as a cashier - that seemed to be all he could get.  Then came the car accident in February 2003 - he was T-boned after skidding on ice - the "jaws of life" were used to cut him from the car.  He spent eleven days in the hospital - broken ribs, bruised spleen, punctured lung, nerve damage in his left arm.  After being unable to work for two months, Target wasn't interested in hiring him back - he'd been "too slow".  He found a job at a group home, working during the day with the mentally disabled, and quit that after three months, finding a much better job doing casework again, only to be referred to Voc Rehab after two or three months - a kind of "save your job" evaluation of his hearing - turned out he did need hearing aids, and went back to work, only to be let go four months later.  After that, he had a series of jobs at nursing homes- he'd make a poor judgment call and be let go after a few months, time and time again.  He did home health aide work - with three or four different companies - but many clients didn't want him back after he'd worked with them a few times.  And so it continued for the next few years.   For the last several years, he's worked a couple of hours a week with one client who really likes him. 

I blamed the car accident.  I was certain there must have been trauma to the brain even though there was no obvious head injury.  In 2006, I had him contact Voc Rehab to see if they could help him - get some testing done - there had to be a reason that things were just going so badly.  He was a college graduate!  He'd run a day treatment program years ago in another state when we were first married!  He'd supervised nurses and licensed social workers!  He met with neighbors concerned about the location of the program in a residential setting!  It had to be the car accident.  The changes I saw - the withdrawal from family - the lack of interest in what was going on in his kids' lives - the lack of interest in what I was feeling about all this - the stress - he didn't get it - and it seemed he just didn't care.  In the mean time, his hearing declined.  And he didn't seem to be able to do things he used to be able to do.  The neuro psych testing showed some deficit areas, but nothing conclusive - he should be able to find a job.  THEY JUST DIDN'T GET IT!  Something was wrong! 


Our family life was very different - my children were 15, 18, and 20 when my husband lost his job.  He was very lost after losing the second job, and they couldn't figure out what was going on either.  He was a wonderful, gentle man, kind and loving and lots of fun.  When they were young, he would sing them barbershop songs every night when they went to bed, he took them to the pool all the time in the summer - we'd go camping, take road trips out west,
stopping at the Corn Palace in Mitchell, South Dakota, and at Wall Drug, and Rapid City - he was always there for them - at every school meeting and event - at every show they were in - helped coach their soccer and roller hockey teams - he didn't miss anything!  He played Santa Claus at so many department stores and malls over the years!  He could speak Spanish and knew sign language, and loved when he got to use that as Santa Claus.  Their hero was losing his powers.  I rushed to figure out how we could manage financially - worked more hours - used our equity line of credit to get us through - sure that something would work out - it did for a few months, and then we'd start all over again.  He started seeming a little eccentric - being very loud in public places - talking in Spanish to most people he met - seemed unsure of how to even look for a job - would walk the dog every night, despite the cold, the rain, the heat - even after the dog started having trouble walking - he didn't want to go anywhere unless we were back in time for him to walk the dog - eventually he was dragging the dog behind him - one day he came home with out the dog on the end of the leash!  He didn't even realize it til he was back in the driveway!  He used to be the life of the family gatherings - now after getting in the door, saying hello to everyone in Spanish, he would keep to himself and not engage in conversation.  I assumed that was because of his hearing problems, and I'm sure it did have a lot to do with that.  He had cues when entering a home - knew people were saying 'hey, how are you' - but he couldn't carryon much conversation after that - and couldn't join one because he wasn't sure of the subject matter.  Hearing loss can be so isolating all on its own, and lends itself to cognitive difficulty, as so much brain power is spent decoding what is said that comprehension loses out.  He began only watching game shows - no story line to follow - just lights and sounds and people either winning or losing and audiences clapping.  He was rude to people - not in a terrible awful way, but seemed to have no filter - would speak loudly in the movie theater, telling me to shut up when I tried to let him know he was being really loud.  He would refuse to get in a picture at a
wedding, or snap at me in front of anyone if I asked him to lower his voice, or nudged him to wake him up in church.  This was not the man I married.  This was not the wonderful man my children loved as their father.  My youngest son, at the age of 22 home from college, said it was like a man living in our house - someone who wasn't part of the family - he didn't seem to care what was up - how anyone felt - that we were even around.  I arranged neuropsych testing again in 2013 - sure enough, cognitive abilities had significantly decreased since 2006.  Now I had it on record. 

I was not always very nice over the last ten years - I would yell, cajole, threaten divorce, try anything to "snap" him out of it - try to get him to see that we needed him to be financially contributing - things were tight - he needed to find SOMETHING to do to help bring in some money.  We needed him to be a part of our family - a husband and a father.  He did try - and I could tell his skills were becoming very limited, and his hearing was worse, but I kept thinking maybe he was just in a funk - that I could get him back on track.  Maybe he was just depressed.  I wracked my brain - still thinking that the car accident and the hearing loss had to be the crux of the problem - some sort of brain injury.  He had over the last year established such an unbreakable routine - up at 6 am, certain days he would have cereal, the other days hard boiled eggs.  Checking for the paper; taking his vitamin and medication for high blood pressure; drinking four bottles of water each morning; playing spider solitaire on the computer until he won - sometimes it took hours - playing another card game on a little handheld game - until he won - sometimes it took all day - lunch at 11, come hell or high water.  Upstairs by 7 to take his hearing aid out and put his slippers on, watch Jeopardy and Wheel of Fortune, in bed at 9 - turns out the light at 10:15.  No spontaneity.  He doesn't like missing his shows.  He began what's called pursed breathing - most of the time, he puffs his cheeks out and puffs the air out through his mouth - so if you're sitting in front of him in church, you feel a wind on your neck - if you are speaking to him, you feel like he's blowing in your face.  I thought it might be a side effect of a medication or something when it started, but - no - and breathing tests didn't indicate any problem - just some kind of tic he'd started.  About a year ago, I suggested he join the senior center to get some exercise - asked him to go at 5, when I got home from work, so that I had an hour to myself that I could count on most days.  It was so frustrating to come home at lunch and after work and find him just sitting watching television - and he was perfectly fine with it - didn't understand why it bugged me so much.  This WAS NOT NORMAL!  I decided to see about applying for disability - he began completing all the paperwork with my help - and I realized he didn't remember he'd been fired from so many jobs - didn't remember places he'd worked - during a rare random conversation, I discovered he didn't remember the only trip we'd ever taken together - it was for our 25th anniversary - we'd flown to Florida, rented a little convertible, stayed in a nice place on the beach - this was one year after the accident - just before he got fired from another job - he didn't remember the dinner cruise - the Jimmy Buffet music - the dolphins following the boat - it stunned me - and made me so sad.

I made an appointment with his doctor and went in with him - wanted to discuss some of these issues and ask about a referral to a neurologist.  I was determined to find out what was wrong - what if it was something that could be halted or fixed?  What if it was a brain tumor or something that could be treated?  What if we could have that man back that we knew and loved, and that we knew loved us?  My husband didn't participate in the discussion at all.  He twice asked about getting a vaccination for shingles because he'd had shingles the year before, and didn't want to get it again.  The doctor explained he had to wait seven years before he could get the vaccination and would steer the conversation back to the problems with memory, etc.   My husband did not offer anything to the conversation - I think he didn't get what we were talking about - he didn't see that anything was wrong.  We left with our referral in hand - had an appointment about three months out - everything takes so long to get in nowadays - the day approached - a week before, we got a call and our appointment was moved three months out to July of this year!  AAAARRGH!  We waited it out, and finally met with her - she spent two hours with us - asked my husband some questions - did some small tests in her office - reviewed all the paperwork and questionnaires we'd completed - believed me that there were some cognitive problems, and she felt there were also signs of dementia - she wanted him to get an MRI, and a driving assessment.  FINALLY!  So we scheduled the MRI, and waited to hear back from the neurologist's office to get her report.

This past Monday we met with her.  That's when we got the diagnosis - FTD, or frontal temporal dementia.   A degenerative brain disease.....that would progressively get worse.......What?  Not the car accident?  There's more to come?

That's when I tumbled down the rabbit hole.