So many life events took place in May.  I have to admit, some were a tad scary . . . but there is just a sense that something is going to happen in May.

Today is the 30^th anniversary of my first date with my husband.  It was Spring Formal, our Christian school version of Prom.  That wasn’t one of the scary occasions . . . although it was Friday the 13^th  . . . maybe we should have been scared.

It was also May when I kicked him out . . .

. . . but his appendix burst before he even started packing.  He was in the hospital for two days before he had surgery.

I was so young and naïve and overwhelmed by it all, but looking back, I suspect the doctor may have intended to let him die because he was a drug addict.

An angelic nurse, alarmed and incensed by the situation, began calling the doctor continuously about his duties.  He seemed more than a little perturbed when he had to come in on Mother’s Day to do the appendectomy on my not-dead husband.  My mother-in-law and I were not sympathetic to his plight.  People in the medical field think I am exaggerating when I say he waited 48 hours for surgery (but I am not) . . . he really should have died.

If I had a nickel for every time I heard that . . .

It was May when the AVM in my brain burst.  It was 48 hours before I was even hospitalized . . . and then another three days before surgery.  I should have died too.

You may be getting the impression that medical care is a bit “sketchy” in this town (as my 14-year old would say).  It sure is a good thing that God apparently has some more plans for the two of us!

A few years ago I wrote an account of my “brain event” in story form.  I am going to share that again here.

My husband and I settled into our seats along the third base line at the Modesto A’s stadium that warm, late-spring evening.  I stashed the coats and blankets as we chatted with my co-worker, Zoe, and her boyfriend. I scanned the program we received on entering the park after the Rotary Club’s tri-tip barbeque in the parking lot.

I anticipated getting out of the house with my husband for the first time since the birth of our third daughter eight weeks earlier.  It wasn’t wonderfully romantic, but it was a fun and welcome break.

“Oh, look!” I said.  “My uncle and cousins are singing the national anthem tonight.  I didn’t even know they did that.”

Zoe checked her program and chuckled, “Really?  That’s your family?” followed by her infectious belly laugh. “How cool.”

I searched the stadium.  “Hey, there they are!  Opposite us on the first base line.”

“You should go over and say ‘hi’,” my husband suggested.

“Sure, I’ve got time before the game.  Be back in a bit.”

Across the stadium, my aunt and I exchanged status updates on our families.  This was pre-facebook era.  When she asked about my husband, I said he was fine and turned to point him out.  Suddenly, the back of my head exploded with excruciating pain.

I tried to continue the conversation, but struggling I said, “I’m sorry.  It feels like my head just exploded.”  My aunt looked alarmed beyond all proportion and shouted, “Well sit down!  Sit down, right now!” and pushed on my shoulders.  It seemed inappropriate to sit down on the walkway and I didn’t want to cause a scene, but I finally complied and dropped to the pavement.

My husband was suddenly there. Medics were there.  I threw-up in a trash can.  I was lying on a cot, screaming in pain, embarrassed by the fuss.  I was in an ambulance and then the hospital.

Following my two previous child births, I experienced a severe “migraine” headache which lasted about twelve hours.  Believing this headache was simply my usual postpartum migraine, I assured everyone I would be fine. My husband continually maintained this was no migraine and my minimizing frustrated him.

The CT scan showed “a small cyst”, but nothing of concern.  The doctor sent me home with a prescription for pain medication and instructions to return if I experienced worsening symptoms and/or vomiting…both of which happened as a nurse wheeled me to our car.

My husband watched me through that night while his mother cared for the baby.  I was never able to keep any pain medication down and by morning my headache was screaming again.

On my return to the emergency room, the staff assigned a “med seeking” designation and shuffled me into a tiny cubicle (more like a closet, according to my husband) on a Morphine and anti-nausea drip.  My husband was furious and kept insisting there was a serious problem.  The doctor dismissed his appeal for another CT scan as unnecessary. I knew my husband was beyond upset, but I did not care about anything that day.  Eight hours later the doctor released me again with the same instructions.

The next day was Monday and my husband made a solemn oath that nothing could prevent him from getting me admitted to the hospital that day.  I still believed he was over-reacting, however my condition had so deteriorated that I did not know the day or where our children were.  There was a delay in processing what people said to me and my response.  People began shouting at me.

At one point I went into the restroom and almost immediately my husband was banging on the door demanding to know if I was o.k.  I thought he was completely insane and swore at him (something I don’t do).  It had actually been over thirty minutes and the string of profanities I screamed at him sent a sickening chill through his whole body.  During his military career he had seen a lot of head injuries and now his concerns became an all-out panic.

Our “work families” were now alerted. One of my husband’s co-workers, a former E.R. physician, suspected the truth . . . an AVM bleed.  He made this assumption based on my age and the fact that I had just had a baby.  He suggested my husband request my primary care physician admit me to the hospital.

Not the Actual Dumb Doctor

My husband drove to my doctor’s office and demanded he see me immediately.  My annoyed doctor made a preliminary diagnosis of post-partum depression and sent us back to the E.R. for admission and probable transfer to a mental health facility!

On our third arrival, I could no longer walk and my husband carried me into the E.R.  The physician from Saturday night was now on duty again.  Alarmed at my condition, she ordered another CT scan.  The “small cyst” was now a “massive bleed” caused by a burst AVM, or tangle of veins in my brain.  I was finally admitted to the hospital, but now with little hope of survival.

The initial plan was to keep watch and hope the bleed would resolve.  The neurosurgeon gave my husband the grim prognosis that I would most likely die, and if not, I would have the functioning of a small child. The size and location of the bleed made surgery to repair it unlikely to succeed.  The slim chance of mere survival as a “vegetable” was not considered a good enough outcome to warrant the cost of a risky surgery.

My husband’s physician friend knew surgical repair was strictly a last-ditch effort and the fifth day was the last chance to do it with any hope of survival.  However, he and my husband felt every possible effort should be made.  He helped bring enough pressure to bear on the neurosurgeon that he finally attempted to clip the veins . . . five days after the bleed began.

The surgery was a success!

Discharged ten days later, I began therapy to learn to walk and to think logically.  I had also lost some language and a lot of conversational ability.

(c) Can Stock Photo / Leaf

The rehabilitation experience gave me new empathy for people with mental illness.  Our brain tells us what is real and a malfunction causes a lot of difficulty!  Several times during my hospitalization I believed I heard people talking who were not there and believed that events occurred that did not.

According to medical types who know this stuff, I experienced a remarkably speedy recovery.  I returned to work part-time four months after the surgery.  Eight months after surgery I was about 99% recovered and returned to work full-time.

What a relief it is to me that God is orchestrating and sustaining life.  Regardless of how careful and responsible I am, I could not prevent the AVM bleed.  I was born with it.  I was also helpless to save myself.  God made it clear to me that He is actually the one accomplishing His will in my life as surely as He caused the walls of Jericho to fall by His own might, not by Joshua’s brilliant military strategy or the fighting skills of the bad-to-the-bone Israeli soldiers.  God put them in a ridiculous situation to show that they weren’t responsible for winning battles.  They were responsible for showing up and following orders.

(c) Can Stock Photo / ruskpp

If the medical community had handled my case correctly, they would have taken credit for the outcome.  Their mistakes allowed God’s power and command of the situation to clearly shine through.  God was not limited by circumstances or doctors or insurance companies.  What an opportunity to experience the awesome power of God!  How can I worry about what tomorrow will bring when the All Powerful, All Knowing, Everywhere Present God of the Universe has my days already numbered and perfectly in his hands?

As it turns out, this was only the beginning of a difficult era for my family, and God has continually brought me back to the same comforting truth of his plan, purpose, and power in my life; and then shown me something new.

The post May Flowers appeared first on Adventures in Loving.

“How are you feeling?” I asked.

“I feel just like I did that time in Tel-Aviv when I was beaten from head to toe and left for dead.  I’m serious.  That is EXACTLY how I feel right now.”

“Well, let’s get going to the doctor.”

Caleb groaned, “I don’t want to go to the doctor.”

“This is your third day missing work.  The County requires a doctor’s excuse.”

Over nine months, Caleb had lost almost 100 pounds and was battling severe anemia. He was seeing a G.I. specialist and a blood specialist (hematologist) but there was no diagnosis or improvement.

On this day, Caleb’s primary doctor said there was a flu going around, but considering Caleb’s overall status, he wanted some labs.  Caleb managed to endure the trip to the doctor and the lab and collapsed back into bed as soon as we were home.

That evening, his doctor called to say the labs showed nothing new and he ordered something for the nausea.  That was a Wednesday.

Thursday night (actually about 2:00 a.m. on Friday) while sleeping on the couch, I heard strange noises coming from our room.

I found Caleb lying sideways across the bed, on top of the covers, feet on the floor.  It looked like he had tried to get up and fell back.  I asked him if he was o.k. . . . he made some garbled noises.  He seemed to be sleeping so I chalked it up to nightmares and returned to sleep.

A few hours later I heard more noises.

This time it was like muffled screaming and I discovered Caleb thrashing around.  It was as if an invisible person was holding him down and he was desperately trying to overpower them to stand up.

Going to help him, I saw blood trickling from his mouth.  He was trying to talk but couldn’t.  I told him not to get up and called 9-1-1, followed by my mother-in-law.  It was not even 5:00 a.m. and the girls were all sleeping.  I needed her to stay with them while we went to the hospital.

The paramedics were the first to arrive (of course).  Some of their questions seemed absurd.

“Is this his normal state?”

What?  Is comatose his normal state?  Uh, no…

Grandma arrived next and then the ambulance (yep, a mom can get there faster than an ambulance!)  Our five year old had been wakened by the commotion and Grandma was holding her on the couch as Caleb exited on a stretcher.

In the sunlight one of the EMT’s commented that he looked see-through.  I pulled my van behind the ambulance and waited in the middle of the street for about 20 minutes.

An EMT finally ran around to my window and said, “We’ve been starting an I.V.  He’s going to be o.k. When I got the I.V. in he gave me a thumbs up and said ‘good job.’”  It was hard to take too much comfort in her words, but I held on to them as we headed for the hospital.

At the E.R., Caleb was completely surrounded and I had to stand way back.  After several minutes the doctor broke away to talk to me.  Those words are etched into my memory.

“I’m going to do everything I can for him, but you need to understand that he is in bad shape.” 

I nodded and understood, but it all seemed unreal.  I just stood there watching.

At one point I heard him yell, “I don’t want to die like this!”

The doctor yelled back, “We’re not going to let you die, Mr. Lane.”

Caleb’s mom joined me after dropping the kids at school and daycare.  I repeated the doctor’s words. Tears welled in her eyes as she stepped away, calling Caleb’s dad to come from work. A soft-spoken hospital employee touched my shoulder.

“Do you need me to call anyone for you?”

“I don’t know, I guess someone should call his work.”  I gave him the phone number.

“I’ll take care of this.  We also have a room set aside for you and your family.  Would you follow me?”

I didn’t really want to, but I followed him to a private room in the waiting area.  Some of Caleb’s relatives had already arrived.  I updated everyone. Caleb’s co-workers started to appear.

His apologetic boss needed some document faxed that day to set up a sick bank so other County employees could donate their sick time to Caleb.  I talked to my soft-spoken hospital guy who took care of it.

I was summoned for an update.  He was stable, on a breathing machine, and being moved to ICU.  He had been given three units of blood.

Caleb’s primary doctor arrived to take over his treatment and gave me a little more information.  Caleb seemed to have aspiration pneumonia (caused by inhaling vomit) and a pulmonologist (lung doctor) would be consulting.

Finally able to sit next to Caleb, I touched his arm, kissed his cheek, and told him I was there. A nurse placing monitors opposite me asked about the scar around his index finger.

I flatly replied, “It was caught in a machine gun clip. The tip was cut off and they re-attached it.  That probably won’t work very well on that finger.”

He looked at me for a few moments and finally answered, “That is not something I hear every day.”

Well, Desert Storm had just begun . . . by now he has probably heard a lot more explanations like that!

In our new ICU waiting area, one of Caleb’s co-workers handed me a sandwich from the cafeteria.  Even though it was mid-afternoon, I honestly did not feel hungry. But I appreciated his kindness and ate it anyway.

When I was allowed to see Caleb, he was still unconscious. He had tubes into his lungs breathing for him and other tubes pumping out the contents of his lungs, which was a lot of blood.

The G.I. doctor determined that the blood had never been in Caleb’s stomach (so it wasn’t true aspiration pneumonia) and felt it would be up to the hematologist to figure it out.

The plan was to be on the breathing machine in ICU for about five days and then moved to another floor to investigate his underlying condition (i.e. what is this?)

The intake nurse, I’ll call her “Jennifer”, was one of the most self-righteous, unprofessional people I have ever encountered.  She disparaged the medication he was taking (for pain and for mental health) and commented that they were doing such a huge favor taking care of him when he obviously was not taking care of himself.  Given the nine months of perplexed specialists and unproductive tests we’d been through, I just wanted to strangle that woman! (O.K. I was also tired and stressed)

Jennifer’s attempt to “get him off all that stuff” caused him to be without his regular medications for almost five days.  This, along with PTSD, caused him to go into a panic every time he started to regain consciousness (being tortured and in restraints in a strange environment…nightmare situation for him). The impatient and skittish nurses would knock him out again, usually in the middle of the night when I was not there.

I encountered some caring and compassionate nurses, but Jennifer’s disdainful attitude toward a person suffering from mental illness and chronic pain was the norm.  The hospital staff often made it clear to me that they did not like my husband and caring for him was a distasteful part of their job.  I hated leaving him alone in that place, and his mother and I were there as much as possible.  But I also had a job to attend to as well as a two, five, and ten year old who needed a parent.

On day thirteen of his ICU confinement, Caleb finally managed an escape attempt…I am sure it was fueled by the delusion that he was being held captive, but that’s o.k.  He gradually loosened the restraints by pretending they were already tight and faked sleep so they wouldn’t drug him again.  Once he pulled the tubes for the breathing machine, the staff took all the credit, everyone on the unit was happy, and he was finally moved to another floor.

Good to be out of ICU, but not out of the woods yet.

His medication routine had been so disrupted that he continued to be suspicious and paranoid.  Again, the hospital staff did not appreciate his behavior and treated him with disregard.  One nurse, annoyed at having to deal with him, handled his IV after cleaning his bedding.  She was openly contemptuous when Caleb complained about it.

As a result, on the eve of being released he was found to have sepsis.  According to the doctor, “the most dangerous strain” – and back to ICU we go!

As he was recovering from sepsis, he began to swell from his arm up to his neck…now there was a blood clot! I began to despair that he would make it out of the hospital alive.  I always knew there was a possibility that he would not live, but now it seemed that he just needed to get out of the quagmire of the hospital!

The idea of doing some investigation while hospitalized was abandoned. Caleb’s doctor was just as eager to get him out of that environment as we were.  As soon as it was medically feasible, Caleb was released to home under the care of a visiting nurse. (Who was awesome and super nice, by the way!)  He was still very ill and on IV treatment for another six weeks.

In the hospital he had received a total of five units of blood and after discharge he received another two units.  There was never a medical explanation of why all this had happened, but he very nearly died three times during his five weeks in the hospital!

He was off work for about six months, going back at part-time and gradually increasing to full time after a year. He struggled for another fifteen months to continue working, but could never get his feet back under him.  He had suffered some brain damage caused by the lack of oxygen and showed signs of dementia.  He continued to be in poor health and was hospitalized twice more before finally, reluctantly admitting the need to retire.

As a result of Caleb’s brain damage and retirement, our family has been in a constant state of adjusting and learning for the past eight years.  It’s been an education I didn’t really want, but it has definitely shaped us and I would not change a thing!

The post 5 Weeks in the Hospital: When a Person With Mental Illness Requires Medical Care appeared first on Adventures in Loving.

“The only way to get through life is to laugh your way through it. You either have to laugh or cry. I prefer to laugh. Crying gives me a headache.” ― Marjorie Pay Hinckley

My husband’s 5 weeks in the hospital marked the beginning of a four year slice of life I call The Tumultuous Years of Ambiguity.

What caused the deterioration which landed Caleb in the hospital was a mystery. After his discharge, he required one more infusion of blood. His weight finally stabilized and over the course of a year he slowly regained strength. We continued our hunt for answers, going from specialist to specialist – blood tests, EEG’s, EKG’s, scans, studies – all “negative”.

I hated the news that this illness or another was “ruled out” . . . even the scary ones. I just wanted to know so we could move on and start to deal with it.  Not knowing was the worst part.

Caleb’s short term memory was not good, so I needed to attend all his doctor visits. . . going to several visits per week and managing the investigation was like another job for me. I was working full time and our two, five, and ten year olds needed more attention than I was able to give them.

Caleb finally talked his doctor into allowing his return to work. He was going stir crazy at home, but within a few months of working his brain injury symptoms dramatically increased. He would get so absorbed in a project that he would forget to go to work.  He sometimes got lost. He became almost obsessed with taking things apart. Our house became littered with computer and flashlight parts, among other things. His thoughts were disorganized and his environment was chaotic.

In the sixteen months back at work before retirement, he was on disability leave for over two months (not consecutive) and he never managed to work a full 40 hour week. After about nine months, his boss and I began to suggest retirement. He refused to even consider the notion – until another blood in the lungs episode.

Caleb wanted to keep working – to support his family. That’s what any husband and father wants. But what if it was in his family’s best interest to retire?

His symptoms were worse when he was working . . . and that put a strain on the family.  And his health was not improving – there was not even a diagnosis – which put him in danger of losing his job anyway.  At least retirement would bring an income.

Even though it went against every fiber of his being – and he fully expected to be viewed as a social outcast – he chose what would be best for his family. It was one of the most painful and self-sacrificial things he has ever done!

The process of applying for and receiving disability retirement took about a year. I (mistakenly) believed that once he was approved for social security there would be resources available to us – assistance with housekeeping and going to appointments, etc – so that I could continue to work and not have a nervous breakdown.

When I found out that there would be no help I cried for a long time.

We were nearing the end of our investigative journey. A few months after his retirement was finalized, we finally saw the specialist who gave us the diagnosis . . . a neuropsychiatrist.

He said there had been numerous onslaughts to Caleb’s brain over the years, from multiple concussions in the army, to drug abuse and pain, and finally the period of time he went without oxygen before I discovered him drowning.

But he also said that Caleb had the highest level of stress that he had ever seen in a patient. He felt the stress was making the brain injury so debilitating and causing the physical symptoms of anemia, weight loss, and even the blood in his lungs.

Finally! A diagnosis! A prognosis! A course of treatment!

As great as that was, nothing really changed the next day, or even the day after that. We still had a long road of acceptance and adjustment to travel – but now at least we could begin!

The post The Tumultuous Years of Ambiguity (Part 1): In Search of a Diagnosis appeared first on Adventures in Loving.

Seven years post-diagnosis . . . seven years of learning, accepting, accommodating, adjusting, finding our new normal . . . and now I guess it’s time to raise the bar.

There you go changing my plans again
There you go shifting my sands again
For reasons I don’t understand again
Lately I don’t have a clue

Just when I start liking what I see
There you go changing my scenery
I never know where you’re taking me
But I’m trying just to follow you

It’s out of my hands, it’s out of my reach
It’s over my head and it’s out of my league
There’s too many things that I don’t understand
So it’s into your will and it’s out of my hands – Matthew West/Out of My Hands

I wouldn’t go so far as to say I “was liking” our life, but things were stable and we had (mostly) figured out ways to manage.

Almost a year ago Caleb’s health started to decline.  I didn’t think much of it – there are always ups and downs – but as time passed I became aware that he was gradually losing ground.  His forgetfulness increased – his dependence on “rituals” increased.

He refused to leave the house without his e-reader and a glass of tea, even if he was just going to drop off one of the girls and return directly home (Yes, he’s been called Uncle Si).  Because they were often “misplaced”, he would rather be late than go without one of these items.  No amount of reasoning could convince him that punctuality was more important than the very remote possibility that he might have to sit without something to read or drink for any amount of time.

Shuttling the kids to and from their various activities was one of the most helpful things Caleb contributed to our family – but we eventually could not depend on him.

I continued to hope this was a temporary situation, that he’d find his footing again and regain the ground he’d lost. But then the gradual decline became a nosedive. The simple tasks that used to take him months to complete he can no longer do at all.  He has trouble even holding things without dropping them.  He is always exhausted.  He started using a cane to keep his balance.  Showers have become unacceptably infrequent.  He even forgets to eat.

His symptoms are consistent with the earlier diagnosis of traumatic brain injury, combined with post-traumatic-stress disorder; although this sudden drop in functioning is troubling and has sent him on another round of doctor visits and tests.  There could be an added aggravating factor.  We are looking at various neurodegenerative disorders.  Hopefully we’ll find out soon.

As a result, we are back on the medical merry-go-round, and I am back to micro-managing Caleb’s life . . . not something husbands are particularly fond of!  The caregiver support organization I recently joined informed me that husband hostility is very common in this situation.  (So that’s a relief!)

So, here we go again…it feels way too early on a Saturday morning to be dragged out of bed.  But I’ve done the annoyed groaning and finished the grumbling.  I’m on my feet, sighing with resignation as I guzzle my coffee and shed a tear or two.  Let’s see what God has in mind for us now.

Proverbs 3:5-6   Trust in the Lord with all your heart.
Do not depend on your own understanding.
In all your ways obey him.
Then he will make your paths smooth and straight.

The post Once More Unto the Breach . . . (Here We Go Again) appeared first on Adventures in Loving.

The clinical definition of PTSD does not adequately portray the realities of life with PTSD.

Agitation, irritability, hostility, hyper vigilance, self-destructive behavior, social isolation, flashbacks, fear, severe anxiety, mistrust, loss of interest in activities, guilt, loneliness, insomnia, nightmares, emotional detachment, unwanted thoughts.

Sounds bad.  Maybe it sounds like someone you know.  But what does it look like in real life?

It looks like a guy insisting that immediately checking brake lights is a matter of life and death and it must be done before moving the vehicle another INCH!!  I don’t know if that truly was the situation, but given my own experiences, it seems more likely than having encountered a couple so self-absorbed that pulling into a parking space to check their vehicle was too much trouble for them.

And it got me thinking about common PTSD events families like ours experience.

PTSD looks like a dad mustering every bit of courage within himself to attend his kids’ school functions . . . pacing nervously at the back of the room, scanning the crowd for signs of danger.  He’s there out of love for his kids, but he makes people uneasy – or concerned – or disdainful.  He should get a medal for his efforts, but is more likely to receive a rebuke from his embarrassed family.

PTSD looks like someone who, one by one, ends relationships because people let him down.  No one is 100% worthy of trust.  He may allow a few close family members some flaws, but holds them at an emotional arm’s length – for their own good as well as self-protection.

PTSD looks like suddenly fleeing a public place because some sound or smell or feeling causes alarm. . . kids yanked off playground equipment, or pulled from a birthday party, or hustled out of a grocery store.

And even though these behaviors embarrass and upset the children, they are also absorbing all the lessons; that life is dangerous, people are hostile, and nothing is stable.

Although I use the pronoun “he” – because of my husband’s combat-related PTSD – anyone who has suffered trauma can develop PTSD.  In fact, children raised in abusive homes often show symptoms and brain changes nearly identical to combat PTSD.

PTSD often includes alcohol and substance abuse (as with Caleb’s early struggles with PTSD) and other darker evidences of anger and guilt.  Unreasonable temper outbursts may punctuate the everyday frustrations of life.  Over-reaction is the primary descriptor.  Baffling as it may be for those of us on the outside, their “fight or flight” response is triggered much more easily, flooding the system with adrenaline, cortisol, and norepinephrine and causing a minor inconvenience to feel like a major threat.

I love our neighbors who are kind and understanding when my husband is up all-night pacing in the backyard.  Previous neighbors called the police and viewed him as a nuisance.

I love church people who think nothing of his back-of-the-church pacing – no strange looks, raised eyebrows, or avoidance . . . or worse yet, the pointed and strained, “can I help you?”

(c) Can Stock Photo / Bialasiewicz

I appreciate the teachers and/or school administrators who have chatted with my husband, thereby deflecting negative attention – rather than asking security to keep an eye on him.

These acts of kindness and understanding go a long way in helping PTSD sufferers and their families through difficult situations . . . And I think it helps the kids see not everyone is so bad.

PTSD treatment has come a long way in the past 30 years.  I am so grateful for the research V.A. has done and that Caleb is now receiving help.  Though PTSD can’t be reversed, the prognosis for significant improvement is good.  Caleb used to believe nothing in the world could compel him to revisit his traumas.  He thought he could bury the bad so deep under a pile of good (wife, kids, job, house, church, helping others, etc) that the bad would be drowned out and maybe even die.  Now he understands that everything he wants is on the other side of PTSD treatment . . . and we’ve seen evidence that it actually works!

Some have said God can heal PTSD.  A real understanding of who God is – and who I am in Him – takes away the fear, guilt, anger, etc.  And I would agree!  These truths are key to experiencing the love, joy, and peace God offers.  However, given the biological and neurological changes in Caleb’s brain, access to that understanding is effectively blocked.  He can’t really receive the healing available to him without the help he is receiving to remove the roadblocks – or “brainblocks”.  PTSD has a spiritual element, like everything in life, but is not solely a spiritual condition.  I think it is similar to my brain event.  God demonstrated his power and presence in that time, but he also used a hospital and a surgeon to carry out his work.

For my girls, I wish they could have experienced less stress and more stability during their childhood, but their story is in God’s hands.  They now have emotional challenges to overcome, but I don’t think I’ve known three more compassionate souls as my daughters.  They accept everyone as-is and I am amazed by their inner strength and beauty.

And for me, I have to remember life is a marathon – not a sprint.  I have to stop and take deep breaths.  I have to set reasonable boundaries for Caleb’s behavior.  (Accommodation has its limits.)  I have to keep focused on God’s power, provision, and plan (huh, three P’s . . . cute) so I don’t lose myself in his diagnosis.

And a sense of humor has been a sort-of glue keeping our family somewhat in the neighborhood of sanity over the years – because, as Caleb loves to quote, “There’s no point in being nuts if you can’t have some fun with it.” – John Nash, A Beautiful Mind

The post Life with PTSD appeared first on Adventures in Loving.

That was me about ten years ago.

Our conversation reminded me of the emotions and struggle of those times.  In many ways I still feel inadequate and ill-prepared for my caregiver role, but I can see now I have managed to gain a few insights over the  years.

Something is Wrong

The first stage for me was a growing realization that something was wrong, that the issue was deeper than mere absent-mindedness or forgetfulness.  This was a very lonely stage.  It seemed as though only I could see Caleb’s brain faltering. I would point out, “He forgot we watched this movie 2 years ago.”  Others would say, “Oh well, that could happen to anyone.”  And maybe it could, but I lived with him for a long time and it was unusual.

He forgot conversations – he forgot to lock the doors – he forgot to put his tools away – he forgot people’s names. But, apparently I had unreasonable expectations.  No one is perfect!

What Do I Do Now?

Then he forgot to pick our daughter up from school.  It happens.  Until he reminded me it was Tuesday and she had Girl Scouts.  It was Tuesday, but Girl Scouts had only ever been on Wednesday.

I worried.  Do I just chalk it up to a harmless momentary lapse, or do I quickly make other after school arrangements?  Even if I was inclined to let the situation slide, the school staff insisted I never allow this to happen again.

As the memory lapses produced more serious consequences, these were the types of decisions required of me.  Should I take away his responsibilities and privileges? Or do I continue depending on someone with intermittent memory?  I wanted him to contribute as much as possible, but not at the expense of our kids’ security.

I didn’t want this kind of responsibility.  I never asked for it.  I love my husband and my kids and will always do whatever is necessary to care for them, but how was I supposed to navigate these daily issues falling on my shoulders?

Although Caleb’s cognitive problems caused more work for me, the work was not the hardest part.

I felt as though I was handed a job I had no business attempting.  I had no training in caregiving!  I didn’t know what was happening or why or how long or what would happen next.  I had no clue what was best for him or our kids.  Worst of all, I didn’t even know where to get the information and training I would need!

Meanwhile, Caleb viewed me as the thief who stole his independence.  And though I tried to maintain a safe and stable environment for our young children (ages 5 – 13), I failed.  My entire family was unhappy and upset with me.  If they did not outright blame me, they thought I should fix things.

So, to sum it up, the super organized neat-freak was tasked with caring for a person with mental illness and brain injury while raising three children and supporting the family.  My reaction was to do what I always do – conduct research, analyze the data, and get the situation under control.  My family was counting on me and I had to succeed.

I did read and learn a lot about PTSD and brain injury.  I talked to anyone I could with similar experiences.  And information has been helpful with management and decisions.  But the most important lesson I have learned is the opposite of gaining control.  The real key to survival is letting go.

Mourn the Loss

In a very real sense, I had to let go of all my hopes and dreams.  Overly dramatic, you say?  Well, it is not as tragic or hopeless as it seems.  I still have hopes and dreams – just not the ones I had when I graduated from high school, or when I got married, or even when the babies were born.

The man I married was substantially different from my current husband.  I’ve talked previously about seeing the unchanged core person sometimes, and that is important to me, but our relationship is skewed and most of our plans will never be.  I had to let go of that man I married – and grieve the loss – to move forward with the marriage that is happening now.

The same is true for all the losses.  I grieve over the strange and scary home our kids grew up in and my life goals I can never achieve.  My plans weren’t wrong or bad.  But apparently they weren’t what God had in mind.  When God picks you up and plops you in a different path, grieve over the previous path – then let it go and embrace the new path.

Trust in the Lord

Another aspect of letting go was understanding and accepting the limits of my responsibility.

Transitioning from partner to caregiver was painful and foreign.  I am organized and responsible, but not naturally controlling.  I prefer everyone to manage their own affairs and pull their weight without my involvement.  However, if a responsibility is mine, I expect full cooperation (i.e. control) . . . which is an unhealthy place for caregivers to live.

I certainly accept the duty to make reasonable decisions for my family, but I can’t possibly manage all circumstances or prevent a certain degree of chaos.  I find the Serenity Prayer annoyingly helpful in navigating  the fine line between supportive caregiver and overbearing boss.

“God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”

If a situation calls for my intervention, I will step up and do my best, but I won’t guarantee a result.  If anyone (including me) expects me to control the behavior of anyone in my family, they are just out of luck.  I definitely identify problems and work toward solutions, but everyone, including my family and I, has to accept the reality of our circumstances and my limited ability to manage them.

Stuff will happen!

It’s not my fault and that’s okay.  I may not be able to fix it, and that’s okay.  But whatever happens, God is leading, guiding, sheltering, and providing – and that is Amazing!

The post Grief When a Loved One Hasn’t Died appeared first on Adventures in Loving.

My husband’s physical and mental health had been declining for almost two years – which I talked about here . . . and my official retirement announcement summarized my reasons and new plans.

But, as the anniversary of this milestone turned over this week, I find myself reviewing the developments of the year and considering God’s faithfulness to us.

CALEB’S HEALTH

One year ago, Caleb struggled to swallow solid food without choking.  He had consulted a gastroenterologist as well as an ear, nose, and throat doctor.  Many tests ruled out cancer and just about any physical cause of the swallowing problem.

We held out hope for the neurologist to find some cause (and hopefully solution), but after two neurologists and another battery of tests, we did not even receive the courtesy of a follow-up visit for the results.  A year into the investigation, the stumped specialists showed little interest in a diagnosis.

Finally, Caleb’s psychiatrist at V.A. submitted a request for him see a V.A. neurologist.  He assured us V.A. was thriving under President Obama.

Caleb had put his toe in the V.A. medical care water several years before.  Unimpressed, we never considered the option again.  However, sitting at a dead-end, Caleb decided it couldn’t hurt to let V.A. give it a try.

One year ago, the V.A. investigation had just begun . . . and the medical staff at V.A. took up the challenge with determination.

Their inquiry eventually led to the Speech Pathology Department in Palo Alto – and a team of doctors watching Caleb swallow on a type of live action x-ray machine.  And the reasons for his swallowing difficulties became clear.

The problem was two-fold, and easily rectified.  First, for an unknown reason certain types of foods left particles just below the point of gag-reflex.  After several bites, the particle build-up activated the gag-reflex – simply solved by swallowing each bite twice, followed by a liquid.  And second, he had developed an inefficient swallowing style, probably after getting dentures.  A few sessions with a speech therapist corrected this as well.

The swallowing solution seemed a bit anti-climactic . . . a high-tech diagnosis with a low-tech treatment.  But the years of difficulty had resulted in malnourishment, which turned out to be the underlying cause of some of Caleb’s other symptoms.

Over the past year, the VA Palo Alto Health Care System solved Caleb’s swallowing issue, traced many “neurological” symptoms to a medication side-effect (solved with a change), started him on physical therapy and monthly injections to reduce pain and recover from malnutrition, and provided hearing aids (this reduced conflict more than you might imagine).

And last month Caleb started a PTSD treatment program . . . finally!

In a way, I feel like this is thirty years too late.  But, of course, it’s never too late.  I am so grateful for everything the VA Health Care System has done for Caleb and me this past year, and for what it continues to provide.

FINANCES

One year ago, our family did not have a long-term means of support.

Caleb had applied for disability compensation from V.A., but we did not know if and/or when it would be approved.  Online horror stories about many years of battle for compensation did not encourage.  I had a small retirement fund which would last 12 – 18 months.  Statistics for start-up businesses becoming profitable within a year are low . . . also not encouraging.

Although I had a plan, I did not really know how our family would survive my retirement.  I only knew for sure that retirement was necessary.

During the first few months of retirement I found we did not qualify for low-cost health insurance (hefty unexpected price-tag) nor any program by which I could be paid as my husband’s care-giver.  Also during those first few months both cars required new brakes, new tires (8 in all), and new batteries.  And our dog decided to help out with a costly a trip to the pet E.R!

From time-to-time I caught a glimpse of impending doom and started to panic . . . but I had not retired on a fleeting whim.  Each time I looked at the waves and started to sink I was reminded to return my gaze to the face of Christ, the One who told me to step out of the boat and the One who promised to keep me safe.

Finally, the day arrived . . . another anti-climactic event.  My morning bank balance phone notification showed a higher balance than expected.  I logged into online banking to find a deposit labeled “VA BENEF”.  From the amount, I deduced Caleb had received a partial disability rating . . . helpful, but not enough to support the family.  A letter arrived a few days later, confirming the rating – but stating employability was still under review.

About six weeks later, another deposit showed up, followed by another letter.  In the end, V.A. rated Caleb 100% unemployable.  To be clear, Caleb does not love being labeled “unemployable”, but is glad to support his family, if only by his past sacrifices.

As I reflect on this past year, I am overwhelmed with gratitude for all God has done.  Caleb is not exactly the picture of health, and our budget still lacks wiggle room, but God displayed His power and care for us this year – reinforcing my peace and confidence in our place in the palm of His hands.  Life can be challenging, but never defeating.

Psalm 23:4; Even when I walk through the darkest valley, I will not be afraid, for you are close beside me. Your rod and your staff protect and comfort me.

The post A Year in the Life appeared first on Adventures in Loving.

I’ve been learning a great deal lately about fear and stress. I recently wrote about the physical and mental health effects of stress on my nutrition site. And I’ve written on this site about my husband’s PTSD, and how that affects him and our  family.

Thankfulness and Stress

As I mentioned in my nutrition post, taking control of our thoughts is critical to overcoming fear, stress, and anxiety. Attempts to scold ourselves out of negative thoughts and emotions – appeals to reason about the frivolity and unhelpfulness of fear, stress, and anxiety – rarely if ever succeed. But training the mind in thankfulness has helped countless captives escape the dark prison of their mind.

Sometimes I am amused when science “discovers” something God has been telling us from the beginning. And even setting the scriptures aside, the benefits of thanksgiving are hardly a new find. Writers, philosophers, and psychologists have been recommending gratitude for centuries.

But recent studies now prove that gratitude improves physical and mental health, benefits sleep and relationships, and boosts self-esteem. And researchers have also determined both complaining and thankfulness create a sort of neural “rut” in our brains which results in a default outlook on life, determining our reactions to life’s ups and downs.

Choosing a Rut

So, I have some choices to make . . . What kind of a rut do I prefer? And what if I want to be thankful, but I am already a chronic complainer?

Well, I decided to go right to the original source and see what God has to say about thankfulness.

One of the first things I noticed is the English words Thank, Thanksgiving, Thankfulness, and Give Thanks are used a lot, and are almost always directed toward God. Gratitude and Gratefulness are used only a few times, and always in relation to other humans. Of course this varies with different translations, but not much.

I’m sure Hebrew and Greek scholars could shed some light on this, but the use of “thanks” seems to be an action which implies dependence, while “gratitude” seems to be more of a feeling of appreciation.  So, it seems to me that God, as the author of all life and architect of human history, should be the recipient of all thanksgiving. We may express gratitude to people who bless our lives, but ultimately God gets the credit even for those.

Every time I think of you, I give thanks to my God. Phil. 1:3

Praise the LORD! I will thank the LORD with all my heart as I meet with his godly people. Psa 111:1

But, what if life is not going my way? What if things are downright bad? What if I have no friends or family – I am a victim – I am in a painful situation – I have nothing good to be thankful for?

Regardless of our circumstances, I think the instruction for thankfulness still stands:

And give thanks for everything to God the Father in the name of our Lord Jesus Christ. Eph 5:20

Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Phl 4:6

 

Be thankful in all circumstances, for this is God’s will for you who belong to Christ Jesus. 1Th 5:18

My Thankfulness Plan

I’ve created a little roadmap I’ve been using to help kick-off the activity of thanksgiving. I’ll share it with you, for what it’s worth.

It starts with what is always true, no matter what bad thing is going on.

• Simply thank God for who He is:

O our God, we thank you and praise your glorious name! 1Ch 29:13

Then we your people, the sheep of your pasture, will thank you forever and ever, praising your greatness from generation to generation. Psa 79:13

• Thank God for who you are:

Thank you for making me so wonderfully complex! Your workmanship is marvelous–how well I know it. Psa 139:14

• And for his creation:

The heavens declare the glory of God, and the sky above proclaims his handiwork. Psa 19:1

• And for His salvation which is already yours:

But thank God! He gives us victory over sin and death through our Lord Jesus Christ. 1Co 15:57

Moving to the future, thank God for what he is going to do in your life . . . for rescue and answered prayer:

Cry out, “Save us, O God of our salvation! Gather and rescue us from among the nations, so we can thank your holy name and rejoice and praise you.” 1Ch 16:35

Open for me the gates where the righteous enter, and I will go in and thank the LORD. … I thank you for answering my prayer and giving me victory! Psa 118:19, 21

. . . for His plan and guidance:

I thank and praise you, God of my ancestors, for you have given me wisdom and strength. You have told me what we asked of you and revealed to us what the king demanded. Dan 2:23

I thank Christ Jesus our Lord, who has given me strength to do his work. He considered me trustworthy and appointed me to serve him, 1Tim 1:12

…for His faithful love:

Give thanks to the LORD, for he is good! His faithful love endures forever.

Give thanks to the God of gods. His faithful love endures forever.

Give thanks to the Lord of lords. His faithful love endures forever.

Give thanks to him who alone does mighty miracles. His faithful love endures forever.

Give thanks to him who made the heavens so skillfully. His faithful love endures forever.

Give thanks to him who placed the earth among the waters. His faithful love endures forever.

Give thanks to him who made the heavenly lights–His faithful love endures forever.

Psa 136:1-7

Why Thank God?

No matter where life takes us, and whether we approve or disapprove of the neighborhood, I believe practicing this discipline of thankfulness has the power to change our outlook and way of thinking.

I’ve started working through these thanksgiving basics every morning, and I can usually add quite a few more blessings I am thankful for! As a result, I more quickly hand over my concerns to God and thank Him for His power and love and direction over difficulties . . . and I notice more of the little blessings along the way which I would normally miss or take for granted.

Giving thanks to God might not transform your life and solve all your problems . . . but then again, it might! Couldn’t hurt to try!

The post Thoughts On Thankfulness appeared first on Adventures in Loving.