It's been years since I have published a post on Josh. He's 35 !!!

 I am still emotionally exhausted from taking care of Josh every day even though I have great help.  It's the perseveration that is exhausting - relentless questions over and over.  It's like Chinese torture - drip, drip, drip, drip until you go crazy !!!   I do love Josh.  He has great spirit and can sometimes be fun.  He is still very difficult to understand because of the severe dysarthria - slurring of the speech and unclear articulation - due to the brain injury.  Here we are at Christmas time last year.  

We are fully vaccinated and have managed to stay healthy.  We are thankful.

Pray for the people of Ukraine !  Support President Biden !  He is doing all he can to support Ukraine while keeping us out of World War III.  

Another holiday has come and gone. Josh is now 30 years old ! Holy smokes...we're all getting old !!

Christmas 2016

Josh's birthday falls on December 26.  Every year since Josh's brain injury, his buddies come over to say hi and socialize.  It's like a big reunion and Josh absolutely loves it.

This year we had a good turn out.  There's Josh in the middle with his arm around Lauryn.  It's always great to see Josh's buddies and to hear what they're doing.  We don't see them that often.  It's kind of them to remember Josh on his birthday.   Josh will wake up the next day and not remember a thing.  He constantly asks me, "How old am I?"  This year marked his 30th birthday...that's a big one.  Now Josh constantly asks several times a day, "Am I 30?"  I say, "Yeah, Josh you're 30!."  

Brain injuries suck !!!! Being a caregiver for a brain-injured loved one is very difficult and emotionally draining !!!

I have not posted on Josh's blog in many months.  Time is a blur when you are a caregiver.  The days all mesh together and it is difficult to think clearly.  It is more difficult to stay upbeat and positive.   It is also very expensive to care for your loved one.  I have literally spent hundreds of thousands of dollars on Josh.  His injury happened in March of 2007...  more than 9 years ago.  Holy smokes !!!

I do not leave Josh alone.  When I go out, I have a caregiver for Josh.  It is a safety issue as Josh has no working memory.  He does not know what he does from moment to moment.  He literally lives in the moment.   His memory of an event probably lasts no more than 10 minutes.   He knows what he is doing when he is doing it, but the event (whatever he is doing -- i.e., playing Xbox, watching a movie, being on the computer, etc.) does not gel in his brain due to his injury.  Josh will watch a Padre game on television or go to a Chargers game and literally have no recollection of seeing the game within 15 minutes of it happening.  It is very strange.  It is all due to the anoxic brain injury.  It is very sad and hard to deal with.  

This morning Josh came to my bedroom at 6 a.m. and in his slurry voice told me he was getting the newspaper.  I heard the front door open.  After several minutes Josh did not return with the paper as usual.  I jumped out of bed and looked for Josh.  There was no sign of him any where.  I shouted his name and heard him from afar.  Josh had opened the gate to our gated community and walked down the street to the kiosks that have free newspapers such as The Rancho Santa News.  This was the first time that Josh had ever left our house and wandered off.  "Oh no!!", I thought....a new challenge.  I told Josh to never leave the gate as he could have easily been locked out and I could have still been sleeping.  Josh immediately started screaming, "Send me back to college, you bit**!!!"  

It is very difficult to reason with Josh when he is agitated.  

What a way to wake up !!!  It is hard to always speak in the correct tone of voice and be loving & caring.  Sometimes you just want to scream at the top of your lungs!!  "Why me ??!!!???"  No words can describe the pain a mother feels for her brain-injured son.  It is like a death every single day.  You think of what your son was like when he was a child -- smart, intelligent, ahead of his time, funny....

Now he is on social security disability and Medicare, has bathroom accidents, slurs his speech, walks with a gait, has balance issues and is a prisoner of the past.  ("Mom, is Michael Jackson dead ?  "Where is Mary?"  (my mother, his grandmother who died years ago....);  "Where are Ruffy and Daisy?" (our dogs who died years ago...) "Where is John Lennon?"  "Where is Junior Seau?"

AD INFINITUM    How sad is that !?!?  Nobody understands what you are going through.  All of your friends tell you, "You should be doing this and that....blah, blah, blah......"  "You need to do this and that....blah, blah, blah....."  THEY DON'T GET IT !!!!   

PERSEVERATION sucks.  This is when they do or say the same thing over and over and over again until you want to lay down and die !!!!  

I am trying to stay healthy so I can continue to care for Josh.  I will be 63 this month, not exactly a spring chicken.  haha !  I tried putting Josh at the Howard House on the weekends so I could have some free time but I did not feel comfortable about the situation.  I dropped him off on a Thursday and picked him up on Monday.  He was in the exact same clothes as when I dropped him off, he reeked of body odor and was filthy...  When I arrived, he was at the computer playing solitaire.  He said, "Mom, get me out of here !"   All of the other patients of the facility were sitting in their wheelchairs, off to one side of the room.... How depressing is that !!!  No interaction.  SAD !!!!  

 I am trying to make the most of my free time.   Music is a big part of my life.  It soothes the soul !   

That's all for now......      Josh, Me and Natalie

Josh looks pretty darn good, doesn't he ?  

Boogie-Woogie played by Paula Mendell

This post has nothing to do with Josh and his brain injury.  I thought I would post it for your listening pleasure.  Hope you like it.  Josh is my biggest fan !  Haha.  He thinks I hung the moon since his brain injury.  It wasn't exactly that way before the injury.  

Brain Injury Walk at DeAnza Cove, March 2014

I haven't updated Josh's blog since May of 2013.  That is pretty bad!  I guess I am burnt out as Josh's primary caregiver and no longer the cheerleader I once was....  Woe is me!  Since May of 2013, not too much has changed in Josh's life.  The good thing is he has not passed out recently!  Yah!  His orthostatic hypotension is under control (drop in blood pressure causing one to pass out (yuck!) and Josh is staying hydrated.  So, no trips to the emergency room lately.  That's a good thing!

Last Saturday (March 29th), we did the San Diego Brain Injury Foundation Walk at DeAnza Cove and it went quite well.  Josh, Zack (Josh's loyal and dedicated teacher), Natalie (his sister), Rachill (Natalie's friend) and I all walked for the cause.  They called it a walk for recovery.  I wish it were as simple as that.  You walk a few miles and you're recovered!  That would be wonderful.  It was actually quite emotional for me.  When we arrived at De Anza Cove, I was overwhelmed with emotion to see so many brain injured survivors there for the cause -- victims of car accidents, amputees, people in wheelchairs, people with walkers, stroke victims, aneurism victims, heart attack victims --  it is all so SAD I can't tell you.  Josh was a real champ!  He walked the three miles with ease.  In looking around me, I was immediately thankful that Josh was not in a wheelchair, could read  write, and speak.  So many victims are in wheelchairs and on life support (feeding tubes and trachs) and will be for the rest of their lives.  Although Josh is compromised in so many ways (no working memory, balance issues, perseveration, dysarthria (slurring of the speech)), he is not on any life support.  This is a wonderful thing!

Here's Josh wearing his Brain Injury Awareness, Survive Headstrong, Walk for Recovery tee shirt with his teacher Zack Dyl (far right), Natalie (second from the left) and Natalie's friend, Rachill at the big event.  I haven't checked the numbers yet, but I heard they raised over $50,000 !  That's pretty good, but really a drop in the buck in the big scheme of things.  Brain injuries are extraordinarily expensive!  As the sign above says, "Brain injury costs society an estimated $60 billion per year"!!  If you think you have excellent health insurance coverage, think again...  A brain injury is costly and can be financially devastating to families.  Not only are you dealing with the emotional aspect of the injury 24 hours a day, you have to provide care to your loved ones.  Very pricey....

But Josh is worth every penny!

Here's Josh holding a copy of his friend's book which was just published called The Skinny Confidential by Lauryn Evarts.  There is beautiful Lauryn.  My daughter, Natalie and I went to Lauryn's booksigning event at Rancho Valencia last weekend and picked up a personally autographed copy for Josh.  He was thrilled.  Josh and Lauryn have known each other their entire lives.  He has has adored Lauryn since grade school....  

The next blog entry will be on perseveration.  What is that you ask?  Stay tuned....

Love from the Mendell Family --  Happy Belated New Year!  This photo was taken New Year's Day, 2014 at Fletcher Cove in Solana Beach.  xoxoxoxo

Josh is now suffering from a condition called orthostatic hypotension.  This condition is a total and complete drag because it sometimes causes Josh to pass out.  Orthostatic hypotension causes a person's blood pressure to suddenly fall when standing up or stretching.  Medically it is a drop in the systolic blood pressure of at least 20 mms and a drop in the diastolic blood pressure of at least 10 mms when a person assumes the standing position.  Josh used to have a very high metabolism.  He would go to the gym with Don and work out like mad.  He'd get on one of the machines and burn 500-600 calories.  Now it is as if Josh is in slow motion.  He acts as if he is running out of batteries.  He is slow and lethargic.  A few times like today he has passed out and ended up in the Emergency Room of Scripps Hospital.  It is just horrible.  When Josh passes out, it is in the morning.  When this happens, I call 911. The paramedics come to the house, hook Josh up to an IV and take him to the ER.  I follow along in the car, panic-stricken and scared to death thinking "Why is this happening?  We were doing so well and now this?!"  

Here is Josh in the ER smiling away in spite of his condition.

Today I decided to research the causes of orthostatic hypotension and try to figure out what could possibly cause Josh to go from one extreme to another.  Why was he full of energy many months ago?  Why is he now lethargic and slow?  Well, a possible cause of orthostatic hypotension is the long term use of Lexapro, an anti-depressant.  Josh has been taking Lexapro every evening since he had the brain injury.  That's six years of accumulated Lexapro in his system.   The doctors explained that Lexapro could be calming to Josh and help lessen his libido.  These are good things as you don't want an aggressive, brain injured 20-something-year-old craving sex and acting inappropriately.  HOWEVER, you don't want your kid passing out either.  So, what do you do?  The cardiologists prescribe Midodrine which increases your heart rate.  Josh takes 5 mgs of Midodrine three times a day -- at 9 a.m., at noon and at 5 p.m.  So, now Josh is on two meds - one to calm him down, decrease his libido and cause orthostatic hypotension and one med to increase his blood pressure due to the side effect of the Lexapro which most likely caused the orthostatic hypotension.  It's kind of crazy.  I have decided to give Josh a smaller dose of the Lexapro (2.5 mgs which Dr. Stenehgem suggested) and continue with the Midodrine for a while, but to closely monitor Josh's blood pressure.  Midodrine can cause high blood pressure which is not a good thing.  

On a good note, Josh is very calm now and very appropriate.  He used to have no filter which is very common with brain injuries.  For example, a year or so ago, if Josh saw a very beautiful girl, he would walk up to her and give her a hug.  This is unfiltered behavior and can be offensive.  Josh does not do that any more.  He is reserved.  A year or so ago, if Josh saw someone that looked Hispanic, he would immediately start speaking in Spanish to that person, "Hola, como esta?", he would say.  This would, at times, offend the person.  Josh does not act like that anymore. When I bring Josh with me to the office, he will watch a movie on his PSP or play Lumosity on the computer or go on Facebook.  He is quiet and sticks to the task, sometimes for hours intently concentrating on whatever it is he is doing, totally oblivious to his surroundings.  A year or so ago, Josh would talk to every customer that came into Reliable Pipe.  He would blurt out, "What's your name?"  Those days are gone.  We now have the new and improved, reserved Josh.  I guess that is progress.  It is certainly easier to manage Josh when we go places.  It is easy for Josh's caregivers.  They like hanging out with Josh because he is easy and appropriate.  It is just so strange how brain injuries work.  

Josh is now 26 years old.

12/26/12

Happy 26th Birthday, Josh!

You have come a long way!  

dentedego - Paula and Josh- A Mothers Devotion and Loyalty

Josh and I at Candela's downtown at happy hour.

Yum.

dentedego - Paula and Josh- A Mothers Devotion and Loyalty

Check out this video that Brad put together from DentedEgo. Also, check out dentedego.com. It's a social network about people helping one another in need, regardless of what that need is.

It's been ages since I have updated Josh's blog. So much has happened. It's been over a year since the last update. The wheels are definitely turning in Josh's brain. It is good for him, but more challenging for me. As you can see from this picture of Josh, he can definitely multitask. He is playing Play Station Portable and is on facebook at the same time.

Josh's metabolism is now very speedy. He is pretty fit -- works out at the gym with his caregivers, Don and Rob. He continues to go to the ABI Program with his teacher, Zack. Zack also does brain-training with Josh every day, does yoga and stretching, takes walks at the beautiful parks in San Diego, takes Josh to his weekly swim lesson and his weekly Spanish lesson with Fernando, one of Josh's fellow ABI students. Josh's schedule is diverse and he is very lucky to have such great guys working with him. Oh yeah, we can't forget Mike Jones, Josh's tutor who helps Josh with his speech, reading, writing and "community skills".

Josh is now full of energy. Everything you hear about being exhausted after a brain injury does not apply to Josh. Josh will stay up all night if you let him. He will play Madden for hours, but is now doing a host of different things. For example, he got into sorting things and "organizing". One day he took every video and DVD out of it's case and starting putting them in different piles. He started throwing away numerous movies including Natalie's latest Christmas gift -- the entire last season of Glee. We, of course, told him this was not acceptable and that he couldn't throw out these DVDs simply because he didn't want them. We also told him that the cases protect the DVDs from getting all scratched up. After I put them all back in their cases, Josh took them all out again. We went back and forth with this. Finally, I just gave up and told him, "Don't throw any videos away, just put them in a separate pile and we'll deal with it later..." Josh also got into this thing where he was going through all his old school papers, notebooks, football and baseball cards and started putting things in trash bags. He'd say, "Throw all this away." At first I was upset, but then I decided that Josh was right about a lot of things. We did have too much junk from years past. So, I started sorting things out with him and we ended up throwing out tons of old school papers -- reports that he had written, old homework assignments, you name it.... We cleaned his room. It's easy to just throw everything in a drawer in the desk and forget about it. The good news is we got rid of a lot of junk and Josh's room is clean.

Josh's teachers at the ABI Program thought that Josh's sorting and organizing was a big breakthrough and was a good thing. Something in his brain was definitely waking up and causing him to "organize" things. I was thinking, "Is this obsessive, compulsive behavior?" It seemed obsessive at the time. Now it's over and we're on to the next thing whatever that may be. You never know what the future holds.... Just when I thought Josh was fairly predictable, he changed. I just don't want him to get into the hundreds of boxed football and baseball cards that are in his closet. When Josh was in grade school he would collect and organize those cards for hours. I think he has several complete collections and they are worth money. It would be a drag to wake up one morning and find Josh in a heap of cards sorting like a madman...

Josh went through a phase where he was getting up at 5:30 a.m. every morning. This really was a drag for me since I used to love to wake up early, make coffee, read in bed and chill for a while before the day got crazy and hectic. I was thinking, "I can't get a break... this is a drag..." This went on for several months. Now Josh is sleeping in until 7:15 or so. It's crazy when I think about how he used to sleep until noon or one o'clock. Now he's waking up with the birds.

Josh is still very difficult to understand which is frustrating for me since I have spent thousands and thousands of dollars on speech therapists. It seems that the more his brain wakes up, the faster he talks. He slurs all his words together. He just came into the computer room, looked over my shoulder as I was typing this and said, "F U".

Josh is still very happy, very much of a team player, is extremely social and wants to talk to everyone including strangers. If we go to dinner, he wants to participate in everyone's conversation. The other night we were at the Fish Market and a couple of guys were watching the basketball game and talking about Michael Jordan. Josh then got up, went over to their table and said something totally indecipherable. Most people are good natured about this type of thing, but sometimes people really get freaked out and don't know what to say. It's like Josh has no filter and just reacts to a situation. This is called lack of executive function in the brain injury world. I am trying to work with Josh on this. It's tough. Josh will sometimes just scream like a crazy person. The screaming only lasts a few seconds and then he says, "I'm sorry, I'm sorry...." At least he knows that screaming is inappropriate.

A few months ago Josh started complaining that his heart "felt funny". One day as we were driving to work, Josh said, "Take me to the hospital. My heart feels funny." I said, "What do you mean your heart feels funny? What does it feel like? Are you in pain?" Josh said, "I have discomfort." I was thinking to myself, "Well, we have an appointment with Dr. Stenehgem at Sharp Rehab at 11:00. Why don't we just wait until then." I asked Josh if he felt it was an emergency and he said, "No, not really." So we went to work. I gave Josh an aspirin when we got to work. He then had a big breakfast from Lolita's and was laughing and joking with everyone. I figured everything was fine. We went to see Dr. Stenehgem at 11:00. I told him what Josh was saying about his heart and he suggested an EKG. The following morning, I took Josh to see Dr. Cortes, our family practitioner, and Josh had an EKG. Everything was fine. The next day Josh started complaining about his heart again. He said, "Take me to the hospital. I am in discomfort. It's my heart..." Josh was pacing. I decided to take him to the emergency room at Scripps. We went to the hospital, stayed there until the wee hours of the morning and after several tests the doctor said, "Josh is fine. We can't find anything." We went home and went to bed. Josh will periodically say, "My heart hurts. My heart feels funny." I have come to the conclusion that he is doing this to get my undivided attention. If I am talking with my girlfriends at a restaurant, Josh will say, "Mom it's my heart." Now, I have learned to say,

"Josh, you're fine. You're just a little anxious." Thankfully, Josh has not complained about his heart lately.

In spite of the fact that Josh is getting more challenging, he is also getting more manageable in many ways. I took him to the theater for the first time a few weeks ago and he did very well. We went to see Guys and Dolls at the Lamb's Theater in Coronado. Josh greeted everyone he saw but once the play started, Josh stayed focused and really enjoyed the show.

I think things are getting better. I have a permanent companion! Lucky me.

Thanks for reading Josh's blog.