Tuesday, May 2, 2017

I'll kick your ALS

May is the month I have dreaded getting to since September of last year. It's ALS awareness month, my dad's birthday (13th) and Mother's Day (my dad use to be the first to text me). My dad died in September of 2016 from ALS. It is such a horrible disease. It leaves the person paralyzed while (sometimes) leaving their mind in tact. 

I am writing this story about my dad and to be honest, some of it is a blur. It was a long and hard two years and I am just telling it how I remember it. 

It all started with a slur.

My dad had just had a tooth pulled so we all figured that he was slurring because of that.

I mean, who thinks that it would have been something worse? So much worse.

After a couple of weeks the slur was still there and now there was a lump in my dad's neck.

My husband, who has had medical training from being in the fire department for ten years, told my dad that he needed to see the doctor as soon as possible. My husband was worried that he had had a stroke.

A couple days later my dad went to the doctor.

I was sitting in my recliner when my mom called in a panic. The doctor was sending my dad to the ER because he too thought that my dad had had a stroke.

My parents told me to stay home and to come up to the hospital in the morning. I had to get Ryan off the bus and my hubby was out of town for work.

They were keeping my dad overnight to run some test.

The next day I went up to the hospital as soon as Ryan got on the bus. I didn't sleep at all that night worried about my dad.

Did he really have a stroke? Not my dad. My dad is strong. He was in the army for twenty one years. He would kick a strokes ass. There is just no way.

We stayed at the hospital all day with people coming in and out. By the afternoon a doctor (I think a neurologist) said that my dad had some problems with his muscles and just needed some medicine. We were told that the slur would go away after a couple days of being on the medicine and some speech therapy.

I honestly don't remember what happened with the lump. I know that he had a biopsy done on it to make sure it wasn't cancer. I went with him for that appointment.

It wasn't cancer. It just seemed to go away on it's own, but I am not sure how long it took.

After being on the medicine from the hospital the slurring didn't go away but got worse. It was getting to the point where we had a hard time understanding what he was saying. Eventually his speech was so bad he had to write on a notebook because we just couldn't understand him.

Then he started losing weight. Without working out and eating like he always did which was about five huge meals a day. My dad loved to eat. It might have been his favorite thing to do. Almost like a hobby. He knew where all the good restaurants were in Houston. From the Chinese buffets to the little mom and pop hot dog shop.

And his muscles started twitching. But what was weird is that they didn't really stop twitching. You could see it in his arms and his legs. They just constantly moved.

So he went back to the doctor.

And this time the doctor sent him to a new neurologist.

And this was the first time we heard that he had ALS. This was November of 2014.

My dad called to tell me that he and my mom were coming over later that night to talk to me about something.

I knew this was bad because he wouldn't even give me a hint about what was going on. I kept asking questions and he would say that I didn't need to worry. Everything was going to be fine.

Later that night they came over.

It was ALS. All I heard was that he had two to five years to live.

Honestly, this night is such a blur.

I remember my mom just crying uncontrollably.

I was crying too, but also thinking that this couldn't be right.

My dad had to be around to see Ryan grow up. He was (is) my son's ONLY grandpa. The thought of my son growing up without a grandpa just broke my heart.

He had to be around to see his sixtieth wedding anniversary with my mom.  They still had to retire and enjoy their life traveling on the motorcycle.

No, we need another opinion.

So back to his regular doctor, he went.

The regular doctor didn't think it was ALS either. He still thought it was a stroke so he sent my dad to have another MRI done. 

And this time we were told that my dad did not have ALS, but had had a stroke at the base of his brain stem and that is why it wasn't caught on the first MRI.

We all breathed a sigh of relief.

Yes, a stroke was bad.

But at least after some speech therapy, he would be pretty much back to normal. That is what we were told at least.

He would see Ryan grow up and be there for his graduation. He would grow old with my mom and live a happy retired life. He would pop up at my house at the most inconvenient times and ask what I was cooking him for lunch (in a joking way).

They said that the muscle twitching was also from the stroke.

 He went to speech therapy for months I think. And it didn't help.

The twitches kept going.

He kept losing weight.

And he was having a much harder time eating. He couldn't swallow. He would put food in his mouth and half of it would fall out.

And now we were seeing some signs of dementia. At the time we didn't know it was dementia. We just thought he was having short term memory from the stroke and that it would eventually get better and he would start remembering things.

One day he came over to my house looking for an envelope he thought I grabbed off of his counter. I was at his house earlier that day, but I didn't know anything about an envelope. He kept pointing at the word envelope that he had written down and motioning envelope with his hands.

I just kept telling him that I didn't have it and didn't know what he was talking about.

Then one day he came over on the motorcycle. He wrote on his notepad that he was going to wait with me for Ryan to get off the bus.

About a minute after writing this to me he stood up and just left. I remember being surprised because Ryan was just about to get home and he was leaving. I asked him where he was going and he motioned that he was going home.

It was weird, but there were so many other things going on that I just didn't want to think about it.

It couldn't be dementia. We were literally dealing with so many other things that I just couldn't believe that something else could be added to this situation.

So anyways,

His speech got to the point where he just couldn't talk anymore. He had lost so much weight that he looked like a different person. He was having a hard time eating. The twitches were still there and he was having a hard time moving his hands.

It got to the point where I realized that it wasn't a stroke. That the first diagnoses of ALS were probably right.

But after seeing so many doctors on and off my dad decided no more. No more doctors. No more testing. He was done and needed a break.

It was probably six months before he decided to go to the doctor again.

And this time his regular doctor sent him downtown to a neurologist who specialized in ALS.

After this appointment, we would have an answer. We would know for sure what was going on.

We went downtown on April 16th 2016. The doctor walked in and after just a couple of minutes of seeing my dad, he confirmed that it was indeed ALS.

Not only was it ALS, but it was one of the worse cases the doctor had ever seen. His reaction to my dad told me that.

It's hard to explain what goes through your mind when someone you love is given a death sentence.

When you know that the dad you once knew is gone. That the one in front of you is still your dad, but in such a different way.

Instead of him being there to take care of you and give you advice I would be the one needing to take over care for him. With help of my mom, husband, and family.

My mom and I had been talking for months about them moving in with us. But they had been in their house for twenty years and it was something that was hard to give up.

And it was for me too. This was the house I got ready for prom in. It was the house that my husband proposed to me in and where Ryan got his first scar.

There was more to it than just a house. It was full of memories.

Ones that we looked back and laughed at. Like the Summer my parents decided to put an above ground pool in the backyard. They had a dump truck deliver sand to level out the yard. So everyone in the family formed an assembly line and we passed buckets down from the pile of sand to the backyard. We laugh at how long that took but how much it was worth it because we loved that pool.

 But I knew that my wouldn't move until she didn't have a choice.

So when she and my dad went to Oklahoma to visit my brother me, my husband, and my other brother went over to their house and started loading up their TV's and furniture. We moved everything from their house to my house and called and told them that they were moving.

If you know my family you know how much my mom appreciated it. We took the decision about moving out of her hands and decided for her.

Luckily we have a big house and so they had their own bedroom, a living room, and what we call the recliner room all upstairs to themselves.

I wanted it to be as much as home as it could be for them.

Then we worked on getting their house sold. It literally took about four months of us going over there every weekend to do the paining and repairs. I joke that I use to think it would be fun to flip a house until we did this. It is hard work.

So they moved in and got settled. My grandma moved in with us too from Colorado. She was such a blessing because she did so much to help with my dad. And she was so easy to live with.

Over the months of living with us my dad gradually got worse.

He had a feeding tube put it. He also had a cough assist machine and a breathing machine. He hated those things.

He got to the point where he didn't want to eat by mouth at all. When this happened, I knew we were nearing the end because my dad loved to eat. To me it was a sign.

His dementia got worse and it was almost like having a kid. I love him so much and this was so hard to see. But luckily most of the time he was really happy. We kind of looked at the dementia as a blessing because it clouded his mind of what his reality was.

He was going downtown for some ALS clinics and going to the regular doctor when needed. But there isn't much you can do for ALS once it is passed a certain stage.

In the beginning you can do speech therapy and lift weights, but this no longer would work for my dad.

There is some medicine for it, but it will only prolong the life for 2-3 months. And the side effects were not worth that.

For about six months we lived like this.

My day depended on my mom's work schedule. I would get up and put Ryan on the bus and then do whatever I needed to do that day. My day surrounded feeding tubes and when the bus got home and parent teacher conferences. My dad couldn't be home by himself so having my grandma here was beyond a big help.

Then September came.

One morning I was laying in bed and I heard a loud thud.

Like something had dropped something.

I waited for a few second to see if I needed to get up.

And then I heard my mom calling for my grandma.

I jumped up out of bed so quickly. When I got the the living room I saw my parents on the landing of my stairs and a big hole in the wall.

My dad was walking upstairs and fell down them. We are not sure how far he fell, but we knew he fell.

His eyes were big and he kept moaning.

Something inside me told me that this was bad. That things were going to change after this fall.

I called my brother because we couldn't stand my dad up and were worried about him falling again even if we could. He rushed over from work and got him off the stairs.

I called hospice who we had only had for three days. They called the ambulance.

(Hospice is weird that if I were to have called the ambulance first they might have cut off care for my dad. This is what we were told a day or two before and I didn't want to take that chance and that is why I called hospice first.)

The ambulance came and took my dad to the hospital.

My mom, my grandma, and I all waited in the ER with my dad all day while they ran tests.

We found out that my dad had broken his shoulder.

That evening the hospice nurse came up to the hospital.

And she dropped a bombshell on us.

She said that he had a couple days left. At most.

That night my dad was moved to a hospice hospital.

We practically lived at that hospital that week.

My brother came into town from Oklahoma. I would put Ryan on the bus and we would go straight to the hospital.

And we wouldn't get home till about ten at night.

It was the hardest week of my life.

We waited.

I will say that the hospital was really nice and the people were amazing. There was a big room that had a living room set up, a kitchen, dining room, and a patio that you could go sit outside.

That patio became my peace of mind that week. I would go out there to catch up on twitter, to call my husband, or to just get some fresh air.

The best thing was so many friends bringing food for us. We were in our own little world and didn't really think about our next meal. One of my parent's best friends fed the whole family three times that week. They bought us pizza and Mexican food.

One of the hardest days for me was eating that Mexican food. Me, my mom, one of my brothers, and my parents friends sat down to eat a meal. I enjoyed it and was happy to have Mexican food. We were even laughing and telling jokes.

And then I went outside and felt such guilt. I mean a guilt like I had never ever felt before. And I broke down. How could I be outside eating and joking when my dad was inside dying? I just lost it to be honest.

The morning my dad died was a Friday. It was September 30th, 2016.

My brother decided to go to the gas station to buy some cigarettes. I thought I would go with him just to get a few moments away from the hospital. When walking out I told my dad that I loved him.

We were leaving the gas station and my other brother called.

My dad had died.

We rushed back to the hospice, hospital as fast as we could.

And he was gone.

My mom, my grandma, and my brother were all there when it happened.

Over the next week we had family come into town.

There were almost fifteen people alone living at our house. It was nice though because it was a needed distraction.

One of our family traditions has been having garage parties. It is exactly what it sounds like. A party in the garage and drive way.

We have had more garage parties, then I can literally count. We had them every holiday, every time someone (my brother usually) came into town, the night before my wedding, birthdays, and just for the fun of it.

We would turn the music up and dance in the garage and drink. There are so many stories from these garage parties. Like the time a friend of ours literally slept outside, in the grass, by a tree. We always tease him and laugh about that.

So that is what we did.

We had the memorial service. My dad had full honors because of the military.

I was so honored and proud to be his daughter that day (and all days). I was proud to be the daughter of someone who loved and served his country most of his life and was recognized in this way.




And then we partied in the garage.

People drank. People danced.

And that is exactly how my dad wanted to end it.

(This time, though no one fell asleep in the yard.)

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