Valentines Day and The Comb

Today is Valentines Day and several days ago the love of my life said I want to take you to dinner. I said ok any special occasion he said it was heart day. Two days later we are at a friends house taking care of her autistic son as she takes care of her mother in law with a medical emergency. He has forgotten heart day which is good. First just him knowing it was Valentines day is the best gift of all. Secondly being able to do something for my best friend with him at my side is wonderful, so my Valentine heart overflows.

My emotions seem to sometimes run with the emotions of stroke brain which can be far ranging, strange, difficult, sweet, sad , and maddening. That does sound like me and I have never had a stroke, my husband had a very Marine Corp mind, and smart he is very smart. Seeing him exhibit stroke brain even after a year often gives me goosebumps, and double takes.

The Story of the comb begins with us recently purchasing a new to us used car. While cleaning out the old car Scotty found a nasty and I mean nasty cheap comb. It looked like it had been chewed on there was something growing on it and some kind of crazy dirt between the teeth the colors of a disgusting rainbow.

He grabbed it and said “my comb, I have been looking for this” If it wasn’t for stroke brain when I looked up there would have been a crooked smile as he held it out and pretended to comb his hair. But stroke brain there was a look of amazement and good fortune that the treasured years lost 79 cent comb has magically appeared. He said I am going to clean it.

My brain screamed “No it is a crummy, nasty 79 cent comb, and it is an ugly green color” My mouth said “OK let’s clean it.

He tried to clean it by running it under cold water. I said let me try, I spent more than 79 cents cleaning it. I soaked it in boiling soapy water, drenched it in alcohol, took an old toothbrush and scrubbed the tines. It is clean. I proudly gave it to him. He looked puzzled and said ” I have been looking for this comb for a long time and you found it” Then the tears came. That folks is the adventurous world of stroke brain.

I have no idea where that comb is today.

Long Time to Go

It has been quite a while since I have written, just life getting busy. We have passed some milestones, 1 year since the stroke, first holidays in the new house since the stoke. Memory drug prescribed and well under way.

Acts of frustration have popped up here and there, some sadness, and impatience of wanting a new normal that is normal, not a new normal that is stroke driven.

Then you have to stop and breathe as I often do and remember with a shudder the Dr’s words, large stroke, deep in the brain, death is imminent. Part of it was true and the other part God reached out his hand and said no he isn’t.

We must never stop looking up and smiling and celebrating. Our latest was me asking him to grab the post it notes. Immediately I thought why did you ask for the post it notes, Scotty does not know what the dang post it notes are! I turned and there he was with a beautiful smile holding the Post It notes over his head like a trophy that was just bestowed upon him for winning a race. Next thing I know I have tears in my eyes what joy! He remembered something obscure. Then the realization hit, putting things up and remembering where they were has become a new reality and it is good.

God created the brain as an intricate computer the worlds first but he built in us the ability thru faith to repair the damage. The hard drive does not have to be replaced it just has to be rebuilt in faith. Reconnect those broken connections. It is possible. How wonderful to contemplate the coming days and months and the joy and accomplishments that will follow.

We are still full of hope, we wipe the tears away and put one foot in front of the other as we continue this journey called life and stroke recovery.

First Holiday

This Thanksgiving was several “firsts” First real holiday in our new house, first holiday with Scott since his stroke. Last year we were all scattered at Thanksgiving our beautiful daughter, husband and children couldn’t bear the daily reports and came to Florida the week of Thanksgiving to spend several 10 minute visits in ICU with her Dad. He doesn’t remember it but she does, the grand kids do and me so grateful that they came and hugged me.

Then they were off driving back to have Thanksgiving and get the kids ready to go back to school. When I look back at last year sometimes it seems it was just one long endless day of standing, sitting, waiting for doctors, waiting for insurance, waiting for the next success. The boys asked me what do you want to do for Thanksgiving and I told them sit next to your Dad in the hospital. So off everyone went. Jack cooked for friends that were helpless in the kitchen. Jake went with his girlfriend to their family gathering. I sat next to Scotty waiting for the approval to move him to the rehabilitation hospital.

This year we had a traditional Turkey dinner in our home. Most years we did not have Turkey but Scotty wanted it so Jack made his bacon covered Turkey and cheesy mashed potatoes and I did rest. It was fantastic as it should be Scott was alive and home what could be better.

The stroke brain is a curious thing as sometimes it is child like in it’s appreciation of things and desires.  So we are letting the stroke brain guide us this holiday season and so far so good.  Our new little house is being turned slowly into a Christmas Cottage and excitement is growing for the Holidays.

While I appreciate the nuances of the stroke brain , I have to confess that I miss my partner in shopping , planning, wrapping and keeping secret the surprises planned.  There is a sometimes weariness in making all of the decisions and plans.  I still have a partner but like most of life it is now different and we are pursuing our relationship to the fullest.

Christmas will be a time to be thankful that Christ was born, for without him Scotty would not be here to enjoy it once again.

October 25 2017

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 Crooked Body

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.

Just one night and one morning

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,

What is a bad day?

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.

What is Stroke Brain

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.

Time Marches On

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.

Your Responsibility to your loved one

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.