Story from a Daughter..

To Him be all the glory.

(No pictures will be posted of the year 2012 because it does not depict who my dad was. He was very sick during this year, and you could see it physically. I do not want people to see him that way because that is not how he is in heaven now, and that is not how I want to remember him.)

2012 was a year like no other. Each year that passed I will never forget because of how much it impacted my life, but 2012 seemed to have the most significant changes that we could see physically and that we experienced as a family.

I started this blog by saying to Him be all the glory, because I truly mean that. God walked my whole family through each and every step of this process.  We started this journey together as a family, holding hands and keeping each other walking day by day.  I was not completely aware of it at the time, but through the changes we saw in my dad, God showed up in miraculous ways. He enabled us to get through each day and with confident hope and trust in Him to get us through the next day.  I apologize for taking down the first blog I wrote a couple days ago, but I felt like God was telling me to re-write it. That something about it was not flowing correctly, and I needed to examine my heart and my words more.  I decided to pray about it, and figure out what I needed to say to truly show how my family struggled, but also that the only way we survived was because of God’s love. He was walking beside us day by day, and moment by moment. 

Matthew 6: 34  Therefore do not worry about tomorrow, for tomorrow will worry about itself.  Each day has enough trouble of its own.

Instantly 2012 began with some major changes; the main one that really broke my heart was that my dad could not talk anymore.  He literally did not speak a word.  He would still point occasionally, and smile, and clap when he liked or disliked something; but there were no words that came out of his mouth. This trait can be common for someone who is diagnosed with FTD, which is something my family read about from books or online resources. But when you experience it in real life, with someone you love, it is a whole new ballgame.  It took adjusting to learn how to communicate with my dad when there were no words coming from his end. Although his behavior told us so much about what he was feeling, which was a blessing because things could have been worse, and there could have been nothing. My dad has always been strong about how he feels and what he wants to say.  So even when he could not talk, my dad was still strong with his emotions.

As a daughter, this part was one of the worst things that could have happened. I could not verbally speak to my dad the way that I used too. On top of his behavior being completely different from when I was growing up, he could not verbally talk back to me. This was something that I immediately had to adjust to because I could not do the same things I used to with my dad. He could not ever give me advice again, he could never pray with me anymore, and he could never tell me that he loved me.  I could see it by the way he treated me, and the smile on his face, but verbally I would never get those things again. My prayers and cries to God were very substantial at this point.  I cried out to my heavenly Father to comfort me, and give me peace during this time because my world was falling apart. I would never have my dad the same again unless God performed a miracle. I believed he could, but I did not foresee what the future would hold.  It was in God’s hands.

Weight loss, and eating habits were another thing that we seemed to battle the most during 2012. When my dad originally started to lose weight it was because he was eating unhealthy food, and a lot less food than he should have been. But now things started to take a turn, now it seemed like the muscles in his mouth were not working properly. He was having a hard time swallowing specific types of food, especially food that was sticky and hard to grasp in your mouth (peanut butter, syrup, etc.). This became fearsome for the family because aspiration could occur during this process. It started in the beginning of 2012, but by the end of 2012 it was worse because almost anything would get stuck in his mouth. He had to use his finger with every bite because the food would not go down, and it would seem to get trapped inside his mouth. This caused a problem with figuring out what types of food he could eat, and what would give him the most nutrients and calories. My dad was still precise about what he wanted to eat, but every few months the main meal would change to a different food that was more appealing to him.

In the summer of 2012 we had another doctor’s appointment to figure out the next steps of this disease. This time is was more serious and emotional. We knew that with the way things were panning out, and how drastic we were watching things change, that we might lose dad soon. The doctors predicted 6-8 months because of the changes they were seeing in his mannerism and more importantly, his weight loss and deterioration of the mind. This was an emotional time for us because we were told the worst news that we would hear; that there was nothing in our power that could save my dad. The only thing we could do was to keep him comfortable, do the best we could with the food, and keep him out of harm’s way because balance and coordination were slowly fading. He would soon start to become weaker, and those were next to go in the progression during the illness.

Psalm 9: 10 Those who know Your name trust in You, for You, O Lord, do not abandon those who search for You.

Psalm 5:1-3 O Lord, hear me as I pray; pay attention to my groaning. Listen to my cry for help, my King and my God, for I pray to no one but you. Listen to my voice in the morning, Lord. Each morning I bring my requests to you and wait expectantly.

There were two major decisions we did that would affect my dad for the rest of his life during the summer of 2012. This was extremely hard for us; we decided that it was time to take away driving. There had been incidents that were a close call for an accident, running into someone, or could have hurt us while in the car. Overall we had all decided that we would not drive with dad anymore, and that started at the end of 2011-2012. But after watching his behavior decrease, and the man we once all knew was no longer there anymore mentally, we knew it was time to take away the car keys because he could hurt someone, and it was just a matter of time. This was difficult because it was taking away a man’s freedom. He loved his big red truck, and he loved to drive it around town. In order to keep him safe, and everyone else in town, we made the executive choice that he would no longer drive. We struggled watching him the first few weeks after this, but than life seemed to even out again. He accepted driving with my mom to church and to the store, and life seemed to be okay for a little bit.

After the doctor’s visit, and a recommendation for the doctor, we also knew it was time to call in for more help with my dad. This was the second hardest decision to make. A nurse started to come to our house at the end of August, once a week. She was part of hospice, and they generously came to the house to do some monitoring on dad to see how his body was doing. She would check his temperature, heart rate, blood pressure and overall mannerism.  She was very genuine, compassionate, and nurturing to my dad instantly; so it was a blessing when my dad allowed her to sit next to him and monitor him. She was also able to prepare us in advance for things that we would start to see as my dad’s disease progressed and it would be quite rapid. This mentally prepared us before we physically saw it.

We were able to spend the holidays with my dad; Thanksgiving and Christmas. Although traditions were going to be different than they ever were before in the past, God gave us comfort and peace because my dad was able to be there with us. By this time, my dad was only able to stay inside and do every day routines. He would sit in the front room for a long time, resting his body and watching things out the window. Although this was a change, we also knew deep down inside that his body was weaker, he was physically so small and fragile, and it was hard for him to get up and down; let alone move around the house or go outside. Mowing the lawn had stopped, and even watching television was down to a bare minimum. I was watching my dad pass away before my eyes, which is something I never imagined would happen. I was able to be home with my dad during the afternoons, because my teaching job allowed me to have long lunch periods. I will be eternally grateful for the time that I was able to spend with my dad, the quiet moments. During the time I would come home from lunch, we would read together (my dad read The Bible everyday), or he would show me something he was reading during the day by pointing to the scriptures. He would also just smile at me. I could sit next to him, hold his hand, rub his arm, and talk to him. He never would say anything to me, he would just smile at me. These were the moments I will hold onto forever. As the months progressed and time went on, I started cooking my dad lunch and continued to sit next to him because he did not have the energy to make it himself or to go outside anymore. These were the precious moments that I knew God was working on my heart, as well as speaking to my dad.

2012 was the year that my dad literally looked sick. His body, personality, behavior and speech were all gone or changed. I held tightly to the promises that God had for us, and the love that we felt next to each other. We began to fully embrace the small things and the big things in life, but most importantly our time together. I became so actively involved with my family because I knew this would be one of the toughest things we would ever go through. I held on tightly to relationships in my family, as well as my own intimate personal relationship with Jesus. I know it might sound odd to people who do not believe in God, or who do not fully understand what it means to have a relationship with our one and only King, but I learned what it meant that year. I felt like life was slipping away from me, and God was the one to give me strength and hope through it all. I talked to him, prayed and read The Bible; all which gave me strength and hope for his promises of Heaven. I truly started to believe everything I was reading, and applied it to my life.

Isaiah 43: 1 The Lord said “Do not be afraid, for I have saved you. I have called you by name, you are mine. When you go through rivers of difficulty, you will not drown. When you walk through the fire of oppression you will not be burned up; the flames will not consume you.”

Isaiah 58:11 The Lord will guide you continually, giving you water when you are dry and restoring your strength. You will be like a well-watered garden, like an ever-flowing spring.

Luke 12: 31 Seek the Kingdom of God above all else, and he will give you everything you need.

2 Corinthians 1: 4-5 He is the source of all comfort. He comforts us in all our troubles so that we can comfort others. For the more we suffer for Christ, the more God will shower us with his comfort through Christ.

Ephesians 3: 16 I pray that from his glorious, unlimited resources he will empower you with inner strength through his Spirit. Then Christ will make his home in your hearts as you trust in him. Your roots will grow down into God’s love and keep you strong. 

A beautiful song written by a beautiful lady, this song really spoke to me during this time! Please close your eyes and listen to these song lyrics. 

To know more about FTD, and about the specific details you can go to this website: http://memory.ucsf.edu/ftd/