On this day October 25 2017, our lives changed and are still in the motion and fluid of those changes.  On that day Scott had a large stroke deep in his brain on the left side.  He became paralyzed on the right side of his body, even his tongue was paralyzed.  On that day my son who is special needs and suffers from anxiety and seizures, helped get his Dad to the ER as quickly as humanly possible without any type of anxiety or seizure and has been clear of them ever since.

As for me my walk with the LORD has become more real, close, fulfilling and with a deeper understanding of how much God loves us.  One year later I look over next to me in bed and there is one of the biggest blessings the Lord could every give me living, breathing and home.

It may be a long road ahead as they say but it is but a blink of an eye compared to the alternative of the rest of my life on this earth without Scott, even knowing we would be reunited again in heaven.  I want as much time here as possible with him.

We continue to move with faith toward 100% healing and restoration of all functions.  We do not sit idly by Scott works out, does speech therapy and works on his small hand movement.  We do most things together.  If there is a Special Olympics event Scott comes and does the most he can and being around all the familiar things and people is wonderful.  He ushers at church and helps with any physical manual labor needed.

We still laugh all the time at things most people might think are sad or a sign of something that is not healed, or remembered properly.  Not us toothpaste on the toilet seat, underwear in the trash, empty bags in the refrigerator, a bottle of ketchup being handed to me instead of water, clothes being changed 5 times a day…our new temporary normal.

Life is not perfect because we are human beings with God given free choice, so yes I still get tired, frustrated, and sad.  I want my feet rubbed by my husband but he can’t because his hand is not 100%.  I want a real conversation about my day at work.   I want to go on a date where I am not cutting food or making all the plans.  These are such brief unimportant things when there is life where death sought to conquer.

On we go still partners in whatever comes next and in all of the outcomes.  We are partners in marriage and faith.  I will be forever thankful for all of the life we have, had and will be living.

 

The stroke recovery is slow, but that just gives you more time to be thankful for what you have and that is in my case my husband is still alive.

A stroke is so very painful for everyone and I know there are other illnesses, diseases and such that do the same but this is the one that effected me and my family.  My marriage, my best friend, my lover, my husband, the father of my children.

The stroke brain changes the person or at least changed my husband he was quiet, funny, pragmatic, wise and the best sounding board around.  He still has a great sense of humor but he really can’t make critical decisions I still bounce things off him and  make him part of the decision making but it is fake just to try to keep him believing he is a part of things.  I grieve and miss my husband I cannot have a normal conversation and the relationship is a new normal and it is wife/caregiver or the caregiver part comes first.

Now I hope people who read this don’t look at it like I feel sorry for myself or I am complaining,  because God assured me when doctors said he would die that he would live and I can never forget that or dismiss it.

Things are different and I miss my husband and sometimes I feel like there is a little boy in his body.  I brilliantly thought of sending him to a gym and he came back depressed because the deficit on his right side jumped up and slapped him in the face. He was upset and wanted to quit, those words never crossed the lips of Scott before the stroke. There were tears that broke my heart.

This man in this crooked body and broken (temporarily) brain survived multiple tours in Vietnam, he suffered heart ache and broken marriages.  He survived job loss, being poor, hungry and now tears flowed like a  child with a skinned knee.  Asking me do I think he will be a man again.

28  + years ago when I naively said those vows which included in sickness and in health I had no idea what that meant.  I did not know that sickness meant my suffering, I did not know I would be praying for my husband to return to me.  I did not know that I would wonder if I had the strength to help him put his socks on one more time.

But God thank goodness is so much bigger than our frail humanity, and I have a constant reminder of God because I am able to get up and shave my husbands face, make sure he is comfortable and his socks are on.  I also tell him I love him and he is great and I remind him how close to death he came but God had other plans and has other plans for him.

Spending the night at my best friends house to take care of her profoundly autistic son my husband and I were binge watching Law & Order the best the original series.  Love that Lenny he was the greatest one line zinger king on TV.

Suddenly my husband points at his chest and tells me when he wakes up it will be great he will speak clearly.  Now by waking up he means his brain healing and speech being restored, not literally waking up in the morning.  I asked him are you going to talk as much then as you do now?  No he says and laughs!  The precious moments of my life to be cherished.

We watch some more, then he looks at me and says I want to make you french toast in the morning. I asked him “do you know how to make french toast ?”  Again the laughing he said “No”.

Why did he want to make me french toast? I am not sure where that came from and don’t really care it was just cool.

The next morning he still remembered which is a great advancement and thrilling.  So we dug out the vanilla, cinnamon, eggs, milk and bread.  He could hold the egg in the right hand but could not hit it hard enough to crack it until I covered his hand with mine and away we went!

Whipping the egg mixture was another study in just how much we depend on our dominant side trying to hold the tool it was mostly sideways in the bowl and was a strain to hold it up right but he succeeded! When it came to flipping the bread over one piece ended up on the other and stayed soggy.

You know without me telling you this was the best french toast I ever had or ever will have!
I continue to be in awe of God’s healing power and presence in our life.  I will be moving on to a new job in which every consideration for my personal life and taking care of my husband is being met.

Scott is truly my hero as he perseveres with his healing everyday working at something and not sitting back and letting the effects of the stroke rule his life,

You may wonder how can you really have a bad day with a stroke survivor when they are as miraculous as my husband as far as recovery goes.  I think “bad day” is with air quotes around it because it could mean literally an endless number of things.

So I am not sure if I would categorize anything as a “bad day” unless we ended up back in the hospital.  But we just got the 3rd round of labs and Family Dr , Dentist, Glaucoma specialist and everything is good.  His eyes are good, no pain, sleeping well, keeping the weight off , A1C down able to laugh and live life.

We went to Target to pick up a RX and some milk.  Pretty benign sounding afternoon right?  We were in and out quickly at the Pharmacy and our son wanted to wander looking at DVD’s.  Off we went my husband pushing the cart and seemingly happily wandering with me.  We were looking for a new basket for his bedside table because the one he had was falling apart.

This was a guy who could look at something and come close to the exact dimensions just in his head.  I picked up a wire basket, he shook his head NO, picked up a cloth one and he laughed too big.  The next one he got a pained look on his face and lifted his hands to his head.  I can’t think about it, it is too hard.  And that was it folks.

I said let’s go home, he said no let’s wander. We wasted another 20 minutes and I picked up a tank top on clearance for $2.40!

We got home and I sat next to him, he started talking about the ladies at Target that confused him when he heard their voices.  That he did not know what to do in that situation.  He began to cry.  Is this a “Bad Day” I am still not sure.  I tried to figure out what happened but the rest of the day was very difficult and he was melancholy.

It was 6:30 pm and he announced he was going to bed.  I said you can go to bed but it is too early for your medicine so I will wake you up to take it in a couple of hours.  He sat back down and continued to be upset.  He later poured water from a bottle on his feet thinking it was lotion and then laid on the bed and cried when I explained what happened.

I mean water WHO CARES!!!  I tried to let him know it did not make any difference it was just his brain getting confused but he was still there and getting better every day.

Is this a bad day? When I could finally wipe the tears away and hold him tight and profess my love for him?  It just can’t be a bad day when he is still there to hugged and comforted.  When he can hug me back and say he loves me.  This cannot be a bad day.

So in conclusion I am not sure it is possible to have a bad day on this road to recovery.

Stroke brain is different for people depending on what part of the brain was effected, I mean that makes sense right.  Different parts of the brain does different stuff.

My husbands stroke brain means quite a variety of things that keep us on our toes.  Most people are not around my husband much at least not for long periods of time anyway.  He does not get many visits, sometimes when he does after a short period of time he just tells people bye-bye go now.  I think he may even did some of that prior to the stroke.

Stroke brain is very hard on everyone.  It is hard on the person because it causes them sometimes to behave out of character.  It makes them do things that make no sense and it confuses things when they do understand and can make sense.

Stroke brain for us means we spend time looking for things.  We look especially hard for cash and the wallet.  We look for dropped pills, blankets, scissors, tools,  oh and the long-handled dust pan…we never found it,  electric tooth-brush head also never found.

We not only look for things but we find things kind of like a treasure hunt.  I cannot tell you all the different places we have found banana peels.  Gum in sink (chewed), scissors in the fridge (my favorite), popcorn kernels in the dryer, underwear in the trash.  Makes for an interesting day.

Stroke brain also means some days are independent and some days you need to be on hand for the shower so you can give the shampoo and soap up the wash cloth.  Dry the back off and help with the socks.  Be there to remind them which is the shorts and which is the shirt.

There is often a child like quality to the stroke brain , child like in the need for you and in the ability to go on without discouragement.

My husband was in the Vietnam war, he did multiple tours of duty and after 1 you had to volunteer.  He was special forces recon, Marine.  He had duties he was not allowed to talk about for 7 years.  He was brave, he was strong, he was resilient.  Today he is fighting a different kind of battle.  He does not always understand the enemy.  He gets up everyday and he exercises and he builds his body back up.

Rarely has there been any despair or defeat it just does not last long and I immediately point out the facts.  They are you were completely paralyzed on the right side, you had a large stroke deep in your brain, they thought you wouldn’t live.  You are a miracle and proof of God’s love, grace and healing powers.

The speech that keeps us seemingly apart at times will not last forever.  I notice improvement all of the time.  The best ever is to hear my husband’s tearful prayers to God , who knows what is in his heart no matter what is coming out of his mouth.

I have done a lot of thinking and counting this week , since I currently do not have a 9-5 to clutter my brain.  Anyway I was thinking about all the little things that sometimes can pile on and make you so tired.  Just as I was thinking about these things and driving in the car a song came on Count your Blessings by JJ Weeks Band.  WOW how true I encourage everyone believers or not to listen to the lyrics of this song.  It brought me back to reality very quickly.

Do you want to know why?  Because instead of counting my blessings I was counting how much time I spent looking for things because of the stroke brain causing my husband to miss place items, throw them away, just lose them.  Everything from money to toothbrushes.

I was counting that I have probably shaved him 375 times in the last 595 days since he returned from the hospital with the infection that almost killed him.  Counting shaves instead of being thankful there was still a face growing whiskers.

I was counting the number of times, I put socks on his feet, deodorant under his arms, insulin in his arm, filled the medicine container and asked him to please just take the pills from the cup.  When he dumps them in his hand one or more will typically fall and then it is a scramble which was dropped what was swallowed -you get the picture.

Then folks there are the tears, his tears, my tears, longing for the days of normalcy….instead of thanking God that there are any days at all.

I know this is nothing to be ashamed of, that I am human with human faults and strengths and it is only Jesus Christ who keeps me on my feet for another day to thank him for all I have and all I will have in him.

When someone is in the hospital for any length of time you cannot just leave them and know they are being taken care of well.  I don’t mean the nurses and staff are not great but there is a different level of care and only so much they can do everyday.  You are the one doing all the little things and always watching what is happening how your loved one is reacting and preparing to ask and answer questions.

When my husband was in ICU it was fantastic care, but still they are not allowed to do things like trim toenails, bathing is not more important or as important as the meds., the moving him so bed sores don’t occur.

I found some amount of solace in taking care of his feet, and skin.  Trying to brush his teeth when I could and keeping him clean as possible.

The most challenging was shaving his face around the vent.  It turned out to be one of the worst things. I forgot his razor and the hospital razors are the worst in the world I think I used 3 for each section of his face.  I got it done and then hours later his face turned red and was hot and terrible looking.  His poor skin did not like the razor or cheap shaving cream.

He was paralyzed completely on his right side this included his face and tongue. I also massaged his right arm and leg per the Therapists instructions.  There are a lot of hours in the day staring at machines, staring at your loved one, staring at the walls, you get the picture.

The machines become so common that when you first leave the hospital which I did after 14 days to shower, sleep and come back again before 6 am to make sure I did not miss the doctors.  You cannot sleep without them it is like having to have a fan on all night for the noise.

I also was blessed enough to be able to work, my boss questioned are you working?  Yes it is better than just staring!

The days were a constant routine, leaving the room at 5 am while they did a daily chest x-ray, trying to make it to the cafe when the grill was still open or the salad bar fresh.  Hoping that my Twizzlers would hold out until I could get more.  Waiting for the next round of breathing, treatments, test results, movement from the paralyzed limbs. Doctor visits.  Everything else fell into the background.

The main consistent thing was God, his assurance was with me everyday and especially in the emergency room when we first arrived, his assurance that Scott would not die.  It was my strength and my energy.  It was how I could eat, work and sleep.

 

One of the worst parts of the stroke I think was dealing with the health insurance.  That’s sound really crazy doesn’t it.  It happens and when it was happening to me I wondered at people who did not have good insurance or a strong support system like I did.

Shortly after Scott was in Neuro ICU the social worker and an intake Nurse for a Rehabilitation hospital came to see me.  They discussed with me how things should go for Scott, leave Neuro ICU, move on to the Rehabilitation Hospital, then on to a rehab facility and home with home health care.

WOW easy sounding, logical sounding, medically sound because the Doctors, nurses, therapist all agreed yes this should be the plan. Scott was to get the highest level of rehab because he was so physically active and completely independent before the stroke.

I researched the rehabilitation hospital and it seemed great, it was in the network, covered, all the junk it needs to be so off we go.  Then I found out up front and in my face how it really works.  When the social worker mets you very early in the morning to tell you someone in an office , somewhere who are have never seen, touched, examined your husband is the one who decided he cannot go where his huge team says he must go.  It is unreal, and I mean it on top of exhaustion, worry and eating to much hospital cafeteria food you try to figure out what happened…what does this mean.

You try to be logical.  You say I have the highest coverage offered.  I have had the highest coverage offered always.  I pay the highest premiums so I can have the highest coverage.  Why ???  In case one day something bad happens like your husband has a stroke and it is large and it is bad, and it is deep in his brain and he almost dies but does not.

So then your team starts figuring out how they are going to change this situation.  I call my boss, my HR benefits person and anyone else who will listen.  Then the hospital advocate tries and gets shot down but the evil, invisible power that is making life and death decisions based on something other than need and medical necessity.

He was denied, denied, denied, denied, yes folks 4 times each time a little more wind was taken out of my sails.  By the way at this time he was progressing and they got him off the vent and put a trach in.  NOW everyone is excited , they have to approve him now they say there is very specific weaning from a trach..the rehabilitation hospital is only 1 of 2 places that do it.

They denied him.  Don’t worry they say all he has to do is fail the trach test 3 times.  I filled with wonder and fear because I was told you don’t do the trach test right away.  The first test he lasted 45 minutes, then fail.  The second test he lasted 2 minutes went into oxygen failure and his BP spiked to …yes STROKE LEVEL.  Honestly I cannot even remember the 3rd test, but he failed.

DENIED.

What was this crazy world I was in please just let me go back to my life I do not want to be here and listen to this and then make decisions.  They appealed and it was approved.

Dear god, I know there is a special place in either heaven or hell for insurance companies.

Fighting fear is a battle many people face everyday of their lives and their fear is real, the intensity of the fear is personal.  I don’t think I would have survived my husband’s stroke without God’s presence in my life as well as my pastor and friends who supported me in many different ways.

I felt God’s assurance that Scotty would not die in the emergency room.  That does not mean I was not scared or did not weep.  There was plenty of weeping.  Fighting the fear with my relationship with God is what brought me through.

There was a situation where God let me know he was with me and Scotty and I was making the right decision.

What started out as high emotion day because therapy was getting Scotty out of bed to exercise and sit in a chair and everything was going great until his oxygen level bottomed out and he was in a crisis.  They moved quickly and efficiently getting him into bed and the oxygen going strong his levels went up, then down, then up , then down.  I know there may be more horrible things to see but someone struggling to breath is bad.

The pulmonologist with the bad bedside manner was called, he explained to me we need to put Scott on a vent or he would probably die.  I thought immediately of all the real life and TV shows….a person goes on a vent and then you are deciding to pull the plug.  I couldn’t bear it, why did I have to decide.  I walked into the hallway crying .  My boys were in the room, my pastor was there looking at me waiting for the decision.  But Oh God how good he is my pastor who I think of as a great guy and a man’s man.

He said “Diane if it was me I would want Kathy to put the vent in” Of course it was Scotty’s life , his chance and I had to think for him I agreed.

Then that evening the night nurse another great one, came in and said “Diane, I know this is a big step back for Scott’s progress but what you did was give him a chance to live.”

This is how good God is to give you confirmation and reassurance when you are weak and need him the most.  Out of our weakness comes great faith!

 

When Scotty first was admitted to ICU you met so many people just a constant flow.  The nurses, therapists, and other staff all seemed to walk in introduce themselves and explain what position or expertise they had concerning my husbands care.  Some of the doctors did the same.  I don’t live in a bubble and have had my fair share of dealing with the medical community.  One Dr in particular was pretty rough to deal with he walked in did not introduce himself, I couldn’t see his tag to see his name or what type of Dr he was and his first words to me were “Do you have a DNR (Do Not Resuscitate)) your husband is in bad shape”

I guess I had a look on my face, the nurse took him out in the hall and told him he upset me, no he didn’t upset me the stroke upset me. He had the bedside manner of a fence post but that is ok if you are a great doctor.  He became a better doctor because I confronted him on every negative stance he took with Scott’s care or future.  I told him I don’t believe in Unicorns but I have a strong faith in God.  I explained that just because my faith in God was strong did not mean I could not make a sound medical decision and because I made a sound medical decision it did not weaken my faith in God.

On several occasions when he made negative comments like the first time Scotty was alert and tracking was Veterans day while he was watching the Green Berets, he asked me if all Scotty could do was lay on his side and watch movies would he be happy, would I be happy.  OF course not, I told him it was his job to see if that was all he could do …so do you job and get him out of the bed and find out.

By the end of the time Scotty spent in Neuro ICU the doctor’s mannerisms changed when he talked with me.  He was very important being the pulmonary specialist. He also really had warmth towards our son Jacob, I think when he realized Jake was special needs, but asked him great questions about his dad.  Every Time I saw him he asked me how my son was , is he dealing ok with his dad’s stroke.

The moral of this story is no matter what the Doctor’s personality pursue your questions until they are satisfied.  Don’t be mean, rude or disrespectful just stand firm and demand their attention.