DOCUMENTING THE RECOVERY PROCESS

This is a photo of Gene giving us a thumbs up. Showing he is determined to get better and walk, talk and move his arm again. Our sister, Maureen is with him.

You can also see the glass of cloudy looking water. It looks that way because of the thickener in it.

Gene has his "funny glasses" on.

I brought this little monkey to Gene on my first visit. I told him it was to remind him of me when I wasn't there. I was going to be a like a monkey on his back, reminding him to try hard and never give up.

This was taken for our sister Patty. She was not able to go visit Gene at first because she was recovering from surgery. So, Gene thought it would be funny to take a picture of him looking like he was crazy. He said to bring it to her and say "Here's your brother".

Gene has always been funny and even with having a major stroke he still had his since of humor.

The photo isn't the best because I was laughing when I took the picture.

Gene and Robert practicing how to sit up.

Robert reminds Gene to always look at his foot and make sure it is in the right place. When someone first has a stroke they often ignore the side that is paralized and don't look at it.

Gene can really get hurt if he doesn't look at his paralized side. If his foot or leg is twisted it could get broken and he wouldn't even know it. Plus it's necessary to look at the placement of his foot before he tries to transfer into the wheelchair. Otherwise he could fall.

Here, Matt is working on moving Gene's paralized arm. Gene can feel pain and touch but has no movement at all in his arm or hand.

It's important to move his arm so the brain can try to reprogram itself to move the arm down the line. Plus if he doesn't move the arm the muscles will freeze up and become very painful.

Stretching the arm and fingers and wrist becomes something that must be done several times a day.

Matt makes Gene look at his arm. He needs to try to remember to pay attention to his right side.

Katherine is teaching Gene how to talk and swallow again. The exercises seem funny at time but they really work in getting Gene to be able to talk again.

THE DAYS THAT FOLLOWED

I got a call from my SIL telling me Gene had finally gotten stable and they were going to move him out of ICU to the Rehab Unit. She gave me his room number, 118A. I told her I would be there in the morning.

I was very happy to see Gene was looking better when I walked into his room. He was set to have PT, which is when they work on the bottom half of the body, OT which is where they retrain him to get dressed, take a shower, go to the bathroom and work on getting his arm to work. ST, which is teaching him to talk again and then RT which helps to stay active and social.

It's unbelievable how hard it is to do the simplest everyday things when you can't move one half of your body. Not only can't you move but everything on the paralized side is very heavy. Like they say it's "dead weight".

Just turning over in bed, sitting up and eating is exhausting for Gene. Plus just think about it, he can't write, scratch his left side, button up a shirt or tie shoes. Try doing that with only one hand.

I can't explain how hard it is to watch someone you love having to struggle with every day things. Is really sad. You just want to do everything for them yet you know it's best if you let them try to do it and if they can't they will ask for help.

It had to be so frustrating for him to try and talk and not be understood. One thing that really bothered me (and I'm sure it did Gene too) was when several people were in the room talking and they didn't give him a chance to talk too. They would just carry on as if he wasn't in the room. I know they didn't mean to be rude but it was. In fact even the doctors and nurses would come in and talk to us as if he wasn't there. They asked us how he was doing rather then ask him.

One thing that people forget is, that just because someone had a stroke that made it hard to talk, the person's brain is still working and they can think and their IQ is just fine. They just can't get their mouth to form the words. Of course, I'm sure some people have strokes may have brain damage that does remove memories and may even make them forget a lot of stuff.

But the type of stroke Gene had left his memory in tact and his IQ just the same as before the stroke. He was still the same old Gene as always in his brain. Just his body wasn't the same.

Gene told me that when he would talk it sounded normal to him but he knew he wasn't talking normal because no one could understand him. The brain is a strange thing.

At first we would listen to Gene talk and every so often we would be able to understand a word or two and then we would ask a question to see if we could guess what he was saying. It was very tiring for him and for us. At times he would just say "Never mind". It was heartbreaking when he did that because you knew he wanted something. Everyone tried to understand what he wanted and didn't just "forget about" what he was trying to say.

He always was upbeat and at times cracked jokes.

But he also had trouble controlling his emotions. He would cry even when he really didn't want to cry. I found that most of times he cried it was because he was proud of something or it was something touching to him.

Like when Holly told him she graduated from college. He was so happy for her and proud but also sad he couldn't be there to see her accept her diploma. Or when he got cards and flowers. He would be touched that people cared and he would cry.

His PT started out slowly. His therapist was Robert. He would come in move his leg for him. Just trying to get the brain to remember his leg was there. The brain seems to forget about the side that is effected by the stroke.

As time went on Robert showed him how to roll over on his side and then, with help, throw his legs off the side of the bed and sit up. Sounds easy, doesn't it? Well, it wasn't. Just doing that little movement Gene would break out in a sweat and be tired. His brain had to learn to rewire itself and learn how to do things all over. Just doing something so simple used so much determination and strength. But he never gave up.

Even trying to eat was hard. First of all it had to be done with his left hand, even though his whole life he used his right hand to eat with. Then the brain had problems with getting the food on the spoon and into his mouth. That coupled with him seeing double vision made eating a mess. Food would be everywhere. He ended up spilling almost as much as he ate. But, he was never really hungry anyway.

The first time I saw him do his speech lessons I was impressed by his therapist, Catherine. She was very caring and taught him to slow down his talking and to over enunciate each word. She would start with mouth exercises where she had him smile big and then pucker his lips as if he was giving a kiss. Then she would have him say 1,2,3. Each number got louder and higher. Sounds trivial but it worked.

His OT therapist was Matt. Matt showed him how to take a shower, get dressed and also some great exercise for his arm.

Matt is a Christian man and even came in one day and asked if he could pray for Gene. How sweet was that! You can tell Matt really cares about people and really wants to help.

Matt also called in a Dr. for Gene's vision. Everything was double to him. Of course not knowing which item you see is the correct one also made everything much harder. He never knew which item was the real item.

The Dr. ended up giving him some glasses that Gene calls "Funny Glasses". They have prisms in them so the eyes can focus right and make you see correctly. They work and in time they will find out what Gene's vision will be like. Will his eyes heal on their own? Will he need glasses all the time? No one knows. But as time passes, he if he still needs them to correct the double vision they will make lenses to fit normal glasses. Until then, they just have him wear the "funny glasses".

MY NEXT TRIP BACK TO THE HOSPITAL

The next morning I went back to the hospital to be with Gene and check on his progress. Maureen came to stay with Patty and make sure she was OK. I said I would be home in time for Maureen to leave so she could pick up her granddaughter, Trinity, from school.

I made the same walk into the hospital as the first day only this time I didn't have ask where I was going. I knew to go to the double doors at the end of the hall.

This time there was an elderly man at the ICU check point. He didn't seem to care as much as the lady before. He just asked if I had been there before and if I knew which room I needed to go to. I told him I had been there before and I did know. So he buzzed me in.

I quickly walked into the ICU room Gene was assigned to. For a split second my heart stopped! He was not in the room. His wife and daughters were not there either. I wasn't sure what was going on. Part of me was scared to even ask. But I found a nurse and found out they took Gene to have some tests run. I was able to breathe again. He was OK.

So I pulled up a chair to wait. That's when my SIL and one of my nieces came around the corner and into the room. A look of surprise came over my SIL face. She said hi. Then she said she didn't think we would be coming down anymore. She thought we did our visit yesterday and then she would just call us to let us know how Gene was doing.

I didn't say anything at first. But I was thinking to myself "No, I'm going to be here as long as my brother needs me."

She then told me they were going to lunch and grabbed her purse. My niece followed behind her. She then turned around and said I could go with them if I wanted to. I declined. I could tell my SIL was upset I was even there. I didn't want to force myself on her. So I waited in the room.

I didn't want to cause any problems but I wasn't going to leave either. I mean come on! This is my brother we are talking about. The only way I was going to stay away was if HE asked me to.

After they ate my SIL and my two nieces, Amber and Holly, returned to the room. I felt the tension from my SIL but my nieces seemed to fine with me being there. We made small talk and soon Gene returned.

As they were putting him back into his bed I stepped out of the room to give him some privacy. My SIL came out with me. She said she could tell Gene was really tired from the tests and she thought it may be to much for him to have visitors. I told her I wasn't going to stay long. I also told her how much I loved him and was going to be there for him. I still got the feeling she wasn't happy with me.

We both went back into the room. Gene looked pretty tired. He told me they did a swallow test on him and he was told he could eat but had to have his food ground up. Almost like baby food. Any liquid he had was to be thickened with this powder that made it like a runny pudding. It seems he would sometimes not know the food and/or liquids went down the wrong way and they needed to watch that.

It was lunch time and my SIL asked the three of us to step out while she helped him eat. So we went to the lobby.

I sat down in a chair and Amber and Holly sat across from me. We started to talk about how sad this whole thing was and how worried we all were. Holly was crying so I got her a tissue. Good thing I picked up two because I was crying too.

It was the first time we ever really had a heart to heart talk. Amber said she was like her mom and hardly ever cried. She said she saw her mom only cry two times. One was when a little girl that lived by them died and one time when she moved out. Holly perked up and said "What! Mom cried when you moved out! She didn't cry when I did and I was crying like a baby." We all started to laugh.

Both Amber and Holly expressed how much they loved their dad and how scared they were of losing him. Holly said "He is such a nice guy. Why does this have to happen to him?" I had no answer.

Holly also said she was happy we were talking because she had only been able to talk to one of her friends about all this.

I had printed out some info on strokes and what to expect. Also, some info on what the family could do to help with the recovery. Holly said she loved reading everything she could find and was thankful I brought that with me.

One thing that happens when you have a stroke is your emotions get all messed up and you cry, laugh or get angry and you may not even know why.

We all agreed it was heartbreaking to see Gene cry. We knew it was really just the stroke but it still was hard. Like when Holly told her dad she had graduated from college that day. He started to cry when he told her how happy that made him and how proud of her he was.

We all knew he was crying because he loved her very much and was proud of her but it still was sad to see him cry.

I then told both of them that I loved Gene with all my heart and felt like I needed to be there for him. They both agreed. I told them I didn't think their mom wanted me there. They assured me Gene does and that's what matters. I felt much better.

My SIL came out and said Gene wanted to see Amber and Holly alone for a minute. So I sat out in the lobby and she sat down with me. It was as if she had a change of heart and started to talk to me with ease. She said Gene told her it was OK that I was there and I could go see him as often as I wanted. That made me feel good. I think with Gene saying it was OK it made my SIL feel better and like I wasn't just trying to be pushy or like I was prying into their business. She just wanted to do what Gene wanted. I understood that.

Finally, after what seemed like forever, Holly came out and said Gene wanted me to go back in. So we all went back to the room.

He was very tired and I could tell he wanted to sleep a bit. So I told him I loved him and would be back. He said he loved me too and would see me tomorrow.

I said good bye to everyone and went out to my car. On the way home I started to ball like a baby. I couldn't stop crying. It's like I finally felt like I had been strong enough and I had to let it out. I cried the whole way home. The whole hour home.

That night watching TV I cried. I wasn't watching anything sad it was just like a dam broke and the water kept coming out. I went on the computer and cried some more. I finally went to bed and cried myself to sleep.

Why was this happening? Why to my brother? He was so happy about getting to retire in just a few days. Gene and I made plans to travel together. Then he had a stroke. It wasn't right! It wasn't fair.

It made me think about how happy my mom was just before she died. She was approved to move to a senior apt that she really wanted to live at and before she got to she had a heart attack and died.

I felt like our family was not meant to ever be really happy. We had so much pain in our life as I was growing up. My brother died, my father died, my mom died. Please God don't let another one of my brothers die.

Looking back I can see I was going through the steps of the grieving process. Denial, anger, bargaining with God, sadness. I was hitting all of them.

No, Gene didn't die. But he wasn't the Gene from before I had no idea how long he would be gone.

THAT FIRST CALL

It was a very pretty day out. I was outside watering the flowers. My two sisters, Maureen and Patty, were in the house. I could hear them talking but not clear enough to understand what they were saying. One of them said something funny. I heard them laughing. Then the phone rang.

No one wanted to answer it because we had been getting calls for weeks that showed up on our caller ID as "PRIVATE NUMBER". When we would answer the phone no one would be there. It had started to bug us so we decided to just ignore those calls and let the answer machine pick up. This call also showed up as PRIVATE NUMBER.

The phone rang again right away. This time Maureen answered it. She wanted to see what Patty and I were talking about with the mystery calls we were getting. Only this time, someone was there.

Then I heard Maureen yelling outside to me "Joanne, Gene had a stroke and he is in the hospital". I quickly tossed the hose down. I don't even remember turning it off, but I did. I ran into the house.

Maureen didn't have many details. She just said our SIL, Gene's wife, called and said "Gene had a stroke and we should get to the hospital". I was shocked! This couldn't be real. My head was filled with thoughts. I wanted to run to the car and leave right away. I wanted to know more details. But I couldn't just leave.

Patty had just had surgery and was home recovering. She couldn't be left alone. So what do we do? I had to decide quickly and I wasn't sure what to do.

I picked up the phone and called my SIL back. I asked her what happened. She just said "Gene had a stroke and was in ICU." I could hear in her voice that she was scared, worried and on the verge of tears. I asked how bad he was. She said "You just need to get down here".

What did that mean? Was she trying to tell me my brother was going to die? Oh God! Please don't let that happen!

She then said "Gene wants to talk to you. He may be hard to understand". I said "OK". I knew it was good that he was even able to talk and wanted to talk.

Then I heard him. "Hello Joanne. I had a stroke." The words were very hard to understand but I knew what he was saying. "Be calm! Be calm!" is what I kept telling myself. I didn't want to start crying right then. I needed to take care of things without breaking down. I could do that later.

I told Gene I would be there soon and that I loved him. He told me he loved me too. I hung up. I could feel panic starting to set in. I was fighting hard to keep focused.

I told Maureen and Patty I was going to go the hospital. Maureen said she wanted to go too. Patty said she was going to go too. Together, Maureen and I said "No Patty, you can't go. You just had surgery and need to recover". She understood. She agreed she was in no condition to go the hospital right then but made us promise to tell Gene that she loved him and really wanted to be there. We promised.

I went into the computer to pull up the address of the hospital and I heard crying coming from the living room. I walked out there and saw it was Patty. She was crying harder then I had ever seen her. She was so upset she ended up getting sick.

Patty is the oldest of all of us. She has always been the strong one. The one who was always calm and took care of everything. I hardly ever saw her cry.

But now, she was crying and crying. She was so upset she could not go see Gene. What if he died and she didn't get to be there to tell him she loved him? It was heartbreaking.

I knew she should not be left alone. Not only was she recovering from surgery but she was so upset. So, I called one of her good friends to come be with her until we came home.

Within 15 minutes Patty's friend pulled up and Maureen and I were in the car. I was driving.

Looking back I knew angels were with us on that ride. I was going so fast and going in and out of traffic. It seemed like the drive to the hospital was taking forever. Like we were going in slow motion. But in reality I was driving like a crazy woman and could have easily gotten a ticket or worse yet, gotten into an accident.

Then we got there. We quickly parked. We walked, almost ran, inside and asked the lady at the volunteer desk where ICU was. She sent us down the hall to the double doors at the end of the building.

There we were met by another volunteer who had to check us in. She had to be sure there were not to many people in the room before she would let us go in. She was just doing her job but I was not in the mood to wait for her to do it. I wanted to see my brother. I wanted to see him NOW!

I knew we couldn't just open the door and get in because first of all the doors were locked. Also, I had no idea which room he was in once I got through the doors. So we waited. She finally buzzed us in and told us what room to go to.

We quickly went in the room. There he was. My big brother. My hero. Laying in the bed with tubes and wires every where. Hooked up to all these machines.

I don't remember ever seeing my brother sick, let alone laying there in the hospital like he was.

Gene tried to speak but I couldn't hardly understand him. He did manage to explain to us that he was paralized on his right side. But, thankfully, he wasn't in any pain.

I had to take a minute to process what happened. My brother couldn't move his arm or his leg. He couldn't walk. He couldn't even sit up. He had double vision. They wouldn't let him eat anything. So he had to be hooked up to an IV. They said he had to have a swallow test before they could give him anything. He could choke and have the food or liquids go down the wrong way and into his lungs. That of course, would cause him to get even sicker.

I asked to talk to my SIL outside. I needed to know more. I needed to know if he was going to die.

That's when she told me he had the stroke about a week before. He didn't want anyone to know. So she didn't call us. Then he got worse and he asked her to call us.

At first I was mad. How could she not have called us! What if he would have died before we got to be there with him! How would she feel if someone did that to her?

Now I know the answers. She was doing what my brother wanted her to do. She was following the wishes of her husband. It wasn't about us. It was about him.

Later, Gene, told me he didn't want anyone to see him like he was. He just hoped he was going to be better as quickly as he got sick. So why worry every one? Then when he took a turn for the worse he thought he was going to die and wanted to see us. He wanted to tell us he loved us and if he died at least he got the chance to say good bye.

No one, not my SIL, not Gene or even the doctors, knew what was going to happen. Would he get better? Would he have another stroke? Would he even live?

A stroke is a strange thing. No two people are the same. Therefore the healing process is different for everyone. We would have to wait and see, day by day. Even hour by hour how he would do.

I knew right then I would be by Gene's side for as long as he needed me to be. I didn't care who wanted me there or who didn't want me there. I was going to stand by my brother and do everything and anything I could to help him get better.

I know my brother. I know how strong he can be. I know he has been through a lot in his life and has gotten through everything. I know he is going to make it through this too. He has to! He is my brother. My big brother who always made me laugh. My hero who protected me as a child.

Every time we said good bye, in person or on the phone, we always said "I love you" to each other. Now I was going to get to show him I loved him and let him know, it wasn't just words.

WHERE DO I START?

I'm doing this blog as a tribute to my big brother, my hero, Gene. He had a major stroke and I wanted to journal his progress through his healing process.

My hopes are that one day, when Gene is feeling better, he will take over this blog and add his own words about what it was like for him to be forced to take this path in life. A road he never wanted to walk down but one day, out of the blue, he found himself traveling. Alone, with no way to turn around. The only way out was to walk forward and through the pain, trials and tribulations.

I can not even pretend to fully understand what it is like to have a stroke and I pray I never find out first hand. I can tell you what it is like to hear your loved one had a stroke, may not live and what it is like to watch him have to suffer through this. I know what it is like to feel helpless. To want to switch places with my brother, but knowing I can't.

I know what it is like to pray you one day get your brother back. The man you know and love. I know what it is like to wonder if things will ever be the same. I know what it is like to be tired, from getting up in the early hours of the morning, so I can be with my brother until his wife gets off work. I know what it's like to feel guilty, for even thinking I'm tired, when I'm blessed enough to "be able to get up" and be with my brother.

I know what it is like to have your life turned around in the time it takes to be told "Gene had a stroke and you need to get to the hospital quickly". I know what it's like to pretend to be strong when you really just want to cry, scream and blame someone when there really is no one to blame.

So for now, this blog will be my side of the story. The way I viewed everything. My feelings, my fears and my joys.

INTRO TO THIS BLOG

This site is dedicated to my big brother, my hero, Gene.

Gene suffered a massive stroke at the end of April in 2008. This is the story of his journey as he fights hard to recover.

I love my brother more then words can say. I know he will make it through this with the dignity, humor and strong determination he has always shown though out his life.

My hope is that one day I will stop writting this blog and Gene will pick up where I left off. Sharing his own thoughts and feelings of what he went through.

This blog is not only for Gene's friends and family but for anyone who has suffered a stroke or has a family member who has.