Deep Conversations can Still Happen

Thankfully although they are very different, we can still have deep meaningful conversations and we laugh just as much or more than before the stroke. The play and the laughing are the best especially when we can laugh at ourselves.  We both do silly ridiculous things and even when we get mad it is a flash in pan and both of us are instantly sorry and contrite.  Life is very short, and life changes swiftly all those old adages are true.

It is really true if you look out side of your own circumstances there is someone somewhere whose grief is deeper, whose sadness is larger, and whose pain is greater.  I know we are that to someone and others are that example to us. 

We strive to be a light though, never give up, don’t let the lows get to low so you cannot be lifted up again.  We often talk about our faith and how would we do anything without it.

We spend more time than ever together, I schedule, eye, dentist, doctor, most appointments at the same time to save driving time off work etc.  For some it would be too much and I am not saying I don’t crave some time alone and really don’t get much of it.  I am planning on cherishing every moment. 

During my husband’s recent hospital stay it was hard to bear being away long enough to shower but for everyone’s sake I did it.  Someday hospitals will have facilities for family members.  I hope I never need to see that day!  We ate every meal together in the hospital I tried to make it normal.  I ordered a tray we sat together across from each as we ate, looked at the menu together, brushed our teeth together ha ha we never got sick of each other isn’t that a miracle!

We take walks, go to the pool, see a movie, try to still have a date night here and there.  It cannot become caregiver and patient.  You lose something it happened to us where I felt suddenly like a single mom with 2 children or a 24 hr./7 day a week nurse.  That is not what our relationship is about and retaining the love of husband and wife instead of caregiver and patient is a goal that is fluid and worked on every day.

We were on our way to a lab appointment he was getting his creatinine levels checked and me my cholesterol as I am on a journey to better health.  We laughed as we went to the wrong lab and then ran out and drove across the street to the right one.  We were sitting waiting and he said “You drive crazy, I like it and watching you drive” First of all hysterical and second he said it very clearly. 

The other conversation was when he said “ I don’t know how and why you do all that you do”  I thought about it for a few minutes and my response was -#1 God gives me the strength, #2 I love you and would do anything for you.  #3 We have to live life to the fullest and if that means shaving your face and making sure you are well then that is the life I am living and love.

The Hospital and Surgery after a Stroke Pt. 2

Picking up where I left off in the hospital it was a whirlwind and at the same time everything seemed to take forever. Scotty’s blood pressure dropped very low and stayed that way. He slept all the time, his hemoglobin was very low , and the kidney’s became impacted. All of it left him with no energy.

The decision was made to give him a unit of blood and the kidney specialist was called in. All the while and thankfully he had no idea how seriously ill he had become. It is very strange, because he never lost his appetite and when he was awake which was never very long he was alert. I had to remind myself, keep thanking God because this is not going well.

The Kidney specialist explain his creatinine level kept creeping up and they were doing labs everyday to keep tabs on everything everything. His hemoglobin stabilized and the kidneys kept trending in the wrong direction. His baseline is .6 and they climbed to 11.2. The doctor on the weekend did not really make any decisions just explained what was happening. He just kept saying “Dr B is going to get excited when he sees Scotty’s labs” I had no idea who Dr B was but asked around and he seemed to be adored by all the staff and told us no worries he would take really good care of my husband. I couldn’t wait to meet him.

What happened was he started healing from the surgery but his kidneys were doing very poorly. So temporary dialysis was ordered. This means a port is put in your neck, more paperwork and then you do a partial dialysis to get your body used to it. I went with him to sign the releases and then was kicked out.

I went back to his room and waited, and waited and waited. Isn’t waiting for anything one of the most exhausting things in life but waiting in the hospital oh boy takes the cake for sure! I finally went out and ask the nurse if should could tell when he was taken into dialysis it was late go figure, but a least I knew what was going on.

Finally he is back and I took one look at him and knew something was really wrong! I ran out and asked the nurse do they give you drugs on dialysis and she said no, then looked and said they gave him a benadryl because he got anxious. Well it should have been in his chart because benadryl has the opposite effect on him. I said well he is out of his mind in there and hallucinating. She rushed in, took his vitals called the ICU nurse on duty they started running thru the preliminary stroke tests. I keep saying it is the benadryl he should never be given benadryl. I never thought there would be a reason to give it to him.

Hallucinations and the stroke brain are really a terrible combination. Expressive aphasia during hallucinations is quite terrifying. It took forever for the drug to leave his system because of the kidney function. He thought the IV stand was a strange man and the picture on the wall was 2 women. The nurse told me thank goodness you were here because we would have had to take him to ICU and do more tests. This is why people think I am nuts but if he is in the hospital I don’t even like being gone long enough to shower. It is not because I think he won’t get good care, he had wonderful care. It is for my piece of mind and my ability to understand him and what he needs.

Thankfully 2 more dialysis treatments and we were done and soon on our way home…well after 13 days. I was literally begging every doctor to send us home!

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.