The Conversation I had to Have

I do want those that read my blog to know I will finish the blogs about the hospitalization.

I found myself having a conversation with our son with special needs and even as the conversation is happening I was thinking…is this happening, am I really having this conversation? Am I saying the right thing? I don’t know even now. I pray my way thru the road full of twists and turns that living with a stroke have put us on.

Our son who is special needs is very high functioning, so high that you can sometimes forget that lurking in that brain and emotion is someone much younger, and more tender than most 28 year olds.

We happened to be alone driving back from a Special Olympics meeting when he started talking about his Dad. Whom he calls his best friend. When our younger son moved out and my husband semi retired they were together always. They had their favorite haunts, pawn shops, gun shops, movies, and places they explored together. They laughed , argued, did house cleaning, worked in the yard and watched wrestling together.

That all changed the day of the stroke, now sometimes, our son is the caregiver, the one watching out and making sure his Dad doesn’t need anything. He is doing repairs , chores or learning them because his Dad cannot remember how to do so many every day things.

Worst of all his feelings get hurt, and hurt often. The stroke brain can be an emotional roller coaster. One simple thing and sometimes the reply is rude and mean, 20 seconds later the person with the stroke has no idea they said it. But to us they are our loved one and it hurts even as you are saying I understand I know you did not mean it. It still hurts and makes you long for the days before the stroke.

So during our conversation he was very sad and as he talked I realized he thought his Dad was mentally ill. He knows what mental illness is his biological father suffers from several. I am driving and shocked and then had to tell him just like his brain ( he was born with white lesions on his brain) his dad’s brain suffered damage when the stroke happened and his brain bled. Now he is looking at me not really understanding. I said his brain got broken and we are praying for it to be healed. We do speech therapy to help him talk again. In my head I am thinking I cannot be having this conversation but I was it was happening. I was telling my son with special needs, permanent brain damage that his dad now had special needs and brain damage.

I reminded him what doctors, and teachers told us he would never be able to accomplish and he has surpassed all the limitations placed upon him. I told him that is why we play the games, help Dad practice writing, do exercises because this will help his brain learn how to think better. So this circle of life has our son with special needs, making care ride schedules so that he and his Dad can go to the mall. He calls uber and takes him for hair cuts. He makes sure he puts his change back in his wallet and he has learned to give him his insulin in case of emergency. He takes him on drives in his golf cart, they do chores together.

I don’t know what I would do without him and I do not want to know. His life has been impacted very heavily by the stroke and so has mine. We do work at encouraging each other with love and support, neither of us is a perfect person but we both rely on God for our daily strength.

The Hospital & Surgery after a Stroke Pt. 1

Well it happened Scotty had to have surgery on his prostrate. It was a moment I dreaded him having to go back into the hospital while still in recovery from the stroke. It had to be done. I am convinced that the man has the worlds largest prostrate. I can have the energy to praise God a million times NO CANCER.

Still I confess when we left the Urologist office (after 2 trips to the ER 3 days apart) and he performed a scope and said we really have to go in again and clean up and remove part of the prostrate. It was not until we climbed into the car that I cried, was it for Scotty or more for me to this day I am not sure.

It was my husband who comforted me and my faith that he would come thru again and regain his health. A friend of mine said she thinks she is going to start calling him “the come back kid”. When we left the rehab from the stroke everyone referred to him as “the Miracle Man” another friend calls him Superman. All True! The proof is in the pudding as my dear old Dad use to say.

My anxiety was really over him going under anesthesia he did not do well the first 2 surgeries and that before he had a stroke. Scott just kept telling me I am strong don’t worry. Don’t be afraid to ask or even demand in a loving way for answers when someone is in the hospital. I did feel better after talking to the anesthesiologist and he advised there was a gentle drug that would cause a twilight sleep and his waking would be gentle. He spent time with me and was patient and did not act like he was rushing me in anyway. He complimented me for being thorough, he was glad for the information.

Surgery day arrived August 1 2019 we did not have to be at the hospital until 9 am which means you are not the first surgery, the surgeon is not as fresh and you can easily get bumped. It also means longer without food. I did not eat until Scotty could eat that just made me feel better but was probably crazy.

I had to sit in a packed waiting room with low to the ground tables and I always try and find a corner to work in …I pulled a decorative taller table around and sat at the end of it and worked to kill time. The most irritating thing was a fool listening to a DIY segment off his phone with no headset. Yes buddy all of us waiting wanted to hear the guy and the saw and hammering. Finally someone walked over to him and handed him some ear buds and said “for god’s sake use these” and walked away. The guy did not even look embarrassed but he put his phone away and fell asleep. God bless you sir!

I sent a lot of time craning my neck around look for Scotty’s surgery number on the board. Finally someone came and told me they had his room ready and I could go up and wait there! Hallelujah that meant he was probably in recovery. The person at the desk gave me his number and said call as many times as you want for updates. I got to his room 703 and put everything down. The phone rang they said can you come to recovery we need you to sign a consent. A consent? What for I thought he just had surgery…what is happening why is this stupid elevator so slow. Finally back downstairs and they rushed me into recovery, he looked terrible was in tremendous pain. There was too much bleeding he was heading back to surgery. He loved me, I loved him, he kissed me and they whisked him off. Waiting, waiting, finally they called me everything was good and he was in recovery would be to the room soon.

All I could do was say thank you god, thank you god, thank you god. God knows I am not ready to do without him.

Finally I saw him he was awake and not upset , not in pain and hungry. That is what I call day one.

Restaurant Leftovers and the Gas Pump

We found out something new today about Stroke brain. You would think after 1 1/2+ years you had pretty much run into every situation that our simple although busy lives experience. Jake and I found out today we have not experienced all the nuances and emotions that come with a stroke.

We decided to try a new restaurant today and Scotty was in some kind of out of sorts mood when we were trying on shoes he thought we were bringing him the wrong size, would not try anything on until he saw the size on the box. Then it seemed to disappear as we stopped to get some fruit and vegetables.

Onward to the restaurant where he chose a booth next to a really large noisy group. I did not want to argue but it made me a little prickly. We enjoyed the meal and then it came time to box the left overs. We all had ordered the same thing so I said 1 box maybe 2 for the untouched food. Jake held the box and told his Dad load it up. That is when the trouble started. Scott got angry and did not want to mix the food, he kept trying to grab the box. Finally getting no where Jake handed him the empty box. Then he stopped he told us he thought we were trying to take his food. He did not know he did or said anything wrong. He did not know he was mean, rude or ridiculous. My son and I just sat there looking at each other. We knew we handled it all wrong, we knew like a wall of bricks falling on us the stroke brain struck again when we least expected it.
In that instance we both wished we could be perfection, because the tears and stricken look on my husbands face told us how badly we handled the situation.

No longer are the moments when he is consciously angry , mean, rude are he in control. He is at the command of his stroke brain with very little control, over the waves and confusion that hits him in any given situation. We realize we can never stop evolving to make things better for all of us. We learn to anticipate and help soften the blows not make them harsher.

The second part of this blog is pumping gas which came after the meal. We have pumped alot of gas since the stroke and it is always the same we pre-pay usually $20 worth and Scott likes to work the pump although sometimes he does not remember to squeeze the handle so the gas comes out. Often he cannot get the pump into the tank opening. He does like to pump gas and that is what is important. He also likes to look and watch the money and the gallons tick of until we hit the $20.00 it is actually almost and obsession. Today his right hand was not working well and has he was squeezing the pump and trying to look at the tick tick of the gallons and cents, out came the pump shooting gas all over yours truly. The struggle began to try and unclench his hand and get the pump shoved back in the tank. Remember when you use to like the smell of gas?

Now there were tears and dismay. Scotty couldn’t understand what had just happened. He thought he hurt me, he was upset, ashamed, felt useless. These are the unfortunate outcomes of the stroke.

I look at him and I see only the man I love. The funny, witty guy who worked hard all his life. The marine who went to Vietnam and left the best part of his youth in the jungles of a foreign land. The body that was devastated by the stroke that he has fought and worked so hard everyday to be better than before and indeed it is. My son and I talked and on Jake’s mind is I want my Dad back, don’t I know it. He wants to be back that is for sure if he remembers we don’t know.

We can only be thankful and wipe the tears away and face a new day.

A Rough Week

We had a rough week this week, all of us living together with the results of the stroke, or should I say temporary results. We still walk in faith that the healing will be complete. The weekend was great, fun, exciting as we went to a State Special Olympics event and our son won a gold medal. The previous week he was interviewed and the article and video that was published was fantastic. But these weekends are very tiring and more so when you have had a stroke.

Come Monday morning he awoke at 5:30 am confused thinking it was Thursday asking me many questions clearly!!! It took several hours to get things back to our new normal and I started work on time. So thankful for my stay at home job where I can take care of all the situations and still fulfill my responsibilities and earn my paycheck.

Monday speech therapy went pretty well, but on Wednesday 4 colors were confusing and hard to get so there was some emotion and frustration at not being able to do simple colors. The upside is response time is shorter to conversation and there are more responses that are clear and accurate.

Let’s focus on the good, he is alive, he told me he has a great life, he is happy, he wishes he could drive and wants his old life back. These are all good things. Keep reaching for that complete recovery.

Thursday finally rolls around with an early morning Dentist appointment. There was confusion miss spoken words and an issue on the way to the Dentist. Once that situation was handled we carried on to the appointment but the day was on an emotional down hill slide.

Later in the day being upset and irrationally mad at our son. My son calls me to tell me what happened, crying I want my Dad back, he is my best friend. I am sitting at my desk at home crying with him I want my husband, lover, friend back intact. We wept for the Dad and husband who is there but hidden behind a brain that became broken, damaged and changed.

This stroke did not just effect my husband, it is like a nasty sticky wave that washed over those of us in his life and thicker and stickier to those closest. Our special needs son has been by his side since retirement, they worked together and played together everyday. For my best friends son who is profoundly autistic and my husband was his companion, a companion who suddenly disappeared for months. What did he think, he did not understand just Scotty is gone. Now Scotty is back but cannot drive but he is back and they continue to bowl, wrestle, play games and spend time together. This is healing for both of them. Does he even notice the difference, I think of all people Scotty is still Scotty to him and he is glad he is back in his life.

We keep going this was just a few hard tiring days. They will soon be well behind us.

Isn’t There Always Hope?

The answer to the title is yes! The definition of Hope is a feeling of expectation and desire for a certain thing to happen. God makes sure there is always hope. Hope and Faith go hand in hand. I daily renew my hope and faith that my husband will be restored to his fully functioning mind and body.

I sit and watch sometimes as he struggles to cut a simple piece of food and I want to jump in and just make it easier for him but that is not in the long run helping. When he tries to put his shoes on before his socks I want to say wait socks first. I must wait and be patient and wait for that brain to fire correctly. It is so hard. I cannot measure it or describe it. However the alternative was not to have the fight at all.

I often look at him and think how blessed I am to be able to look, touch and talk to him. Sometimes I wonder will my strength, memory, energy and patience dissolve. The decision and it is a decision to not let it dissolve is the one I make daily. I make it for several reasons. One is the flood of tears and weakness that would happen if I made the wrong choice. The other is the collapse of our family and our life.

The right choice means I continue to shave his face, help with his socks, practice his speech with him. I cry in secret and I pray in public.

Something I have learned to do was not ask “are you ok?” too often. I try not to wake him up checking to see if he is breathing at night. I don’t worry anymore if he remembers to use soap or shampoo while showering. I am thrilled with every walk we get to take together. When comes to me proud that he put his own shirt on right and remembered something. The great day when a street is recognized and pronounced properly. When a memory of our children is discussed with clarity.

So enduring does not have to include suffering, a decision can be made to endure with joy. I am trying to endure with JOY! I am going to endure with Hope and Faith.

The Nurses

I cannot believe I have written this many blogs without addressing one that was about the Nurses that took care of my husband. This crazy, serious dramatic journey could have been so different if it weren’t for the nurses, therapists, and patient techs.

It is a big miss for me because I have several relatives (my God daughter, nieces, friends) that are nurses and in the medical field.

First the nurses in Neuro ICU, what they go thru, the worst patients dying. Scotty spent 29 days in Neuro ICU (of course part of those days were from insurance denying him moving). I know for a fact several people passed away while we were there. What struck me the most was the nurses constantly consulting with each other about how to make Scott the most comfortable and deal with his complications to make them less and prevent others. I know they have 2 patients but their devotion to my husband was top notch. Their concern for me because I did not leave for 14 days was sincere. Their ability to instill confidence and their recommendation that I go home, led me out the door to my own bed albeit in tears.

I do not remember everyone’s names but I do remember their faces. There was a male nurse working overnight who was small of stature with quick sure movements, first thing he did was clean Scotty’s room and make sure everything was stocked to the max. His wife was a librarian and he was kind and sure in his knowledge. The day I have to let them put the vent in was so heart wrenching for me. When he came on duty that night he told me “Diane I know this was a big step back for Scotty but your decision is giving him a chance to live.” I felt that was confirmation from God that I did make the right decision. There was the young beautiful nurse who constantly was shifting him checking and tweaking everything , personally talked to facilities to get them to turn the temperature down in the room to help with his fever.

The weekend nurse who knew I was concerned with his cleanliness, who helped me bath him around all the tubes and even massaged his scalp with one of those shampoo caps. She also woke him up on Veterans day, painstakingly lower the drug until his eyes opened. Veterans day how fitting, it was 13 days after the stroke he looked at me! He tracked her with his eyes! It was big news on the floor everyone came to see him, he watched some of the movie Green Berets and he was there alive.

The therapists who were kind and gentle and tried all manner of ways to get him moving and breathing on his own. I think I will have to give them and the patient techs their own blog.

We are forever in the debt of those dedicated nurses who never gave up on Scotty even when the outlook was grim.

As it Goes

These are not the twilight years………yet but we are getting older. I find myself embracing my age and looking forward to what my “older” years will bring. I am not overjoyed at the thought of slowing down, or losing some of my energy or memory for that matter. What I am looking forward to is continuing to thank God that I can glance over and there is my husband.

This is a fact sometimes the young, middle age, older, and elderly someone can get sick and it can often be catastrophic. The other part of the partnership has to overcome and do hard things never thought possible. You are no longer squeamish or think something is gross it all takes on a new meaning when it is someone you love. So I am going to embrace my age and my situation in this wonderful thing called life.

Not everything in life is great, but every life has the potential to be great. So I choose faith and I choose to love my life no matter what happens. I choose to make my husband have the best life possible and to be thankful for a chance to take care of him, laugh with him and yes keep shaving that face.

I no longer get tired and wonder if I can measure 1 more blood sugar, fill up the pill box again and give a shot of insulin. This is an intricate part of the world I walk in and love. If I can make him smile and think he is king of the world and the best husband a person could ever have then that is a great life and it is not a lie. We are still partners, still making decisions together, still folding clothes and cleaning toilets together.

I am embracing the difference a stroke makes, the tears, the crooked smile, the limp, the tenderness, the childlike quality, finding things in odd places, all the things to celebrate.

The truth is this path we walk can be as far reaching as we want to make it stroke or no stroke and I know we certainly have had some high highs and some really low lows in 29 years. Funny thing is the stroke was not one of them, it was more of an opportunity to be thankful, to know God is God and to continue to glance over and see my husband. To place my hand on his chest in bed and feel it rise and fall assuring me he is still breathing. I still have many more days of filling the pill container, helping with the socks and drying off his back when he forgets.

This is a good life.

I am feeling Mad

Tonight I cannot sleep and it is because tonight I am mad at the thing called stroke brain. Stroke brain takes a persons sharp edges and dulls them. Stroke brain makes you think a garbage bag is a zip lock bag. Stroke brain makes it so you cannot say your son’s name, but he answers anyway. You lose the ability to fold clothes with military precision and edges.

Stroke brain hides you from your self. It also hides you from those that love you and are trying to be patient for your full return.

I am mad that I let myself think he may never be what he was before and that means I lost my faith in the God that saved his life. Not permanently but momentarily. It was enough.

Stroke brain makes my husband randomly ask me if I love him and then ask why? Stating I am not Scotty anymore. He looks like Scotty and his sense of humor is Scotty’s, his face is Scotty, his body has become Scotty once again, actual a new an improved one. I don’t think the sadness or the tears are Scotty they are stroke brain but they hurt all the same.

When I got into bed I was not angry but has I laid my hand on my husband’s chest for the millionth time to make sure he was breathing I became angry. I was mad that I was glad he was alive and sad knowing several dear people no longer have their Scotty’s and they have had to learn to go on without them.

I know I cannot stay mad because God has given me so much. If I don’t sleep I also won’t be able to work tomorrow and take care of my family. If I don’t sleep I may watch something terrible on Netflix and never be able to forget it!

I won’t end on this note, I will say with stroke brain you have to celebrate life as it is, with God you have to celebrate each day as it is renewed and renewable. I have to continue because there is no other path to take. Scotty continues also because one thing the stroke did not rob him of was his spirit. He takes pride in sweeping, mopping, laundry and say an entire sentence clearly and he should. He has the hardest job there is and that is to never quit. The stroke cannot win!

Possibilities are endless when you walk with God.

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.