I am brand new at this whole blogging thing and will of course take any helpful hints anyone has to offer. I really want to share my story about the journey I took with my dad as he was going through this awful disease. I love spell check so as I'm typing I can at least spell words correctly, but please look over the way I say things. I am not a professional. My life has drastically changed over the past 5 years, and I am finally able to talk and express my feelings of how I dealt with my dad having Alzheimers while I was a teenager. I hope someone somewhere can relate and find some reassurance from my experiences and what I want to say.
So I start this blog thinking it is going to be easy and I'm going to be able to jump right in and know everything there is or at least be able to figure it all out. I'm not sure what I'm doing. I want to tell my experiences that I had with my dad, I want to help anyone that is having trouble understanding how to deal emotionally with a loved one that has this disease. I want to raise money for research. I want to be apart of the research. I want to do so much and have no idea where to start. I've been so out of touch with this subject since my dad passed away that I've missed so much new information that I should have been learning along the way.
I pushed and pushed the reality of my dad being sick, that when he died I just kept pushing. That's what I did to cope. I have hated my self for years because of it, and haven't been able to fully forgive myself until recently. I had so many regrets of how I treated him, and how much I wasn't there for him or my mom. It has taken me almost 8 years to talk without holding back, and not pushing it away.
My wonderful husband told me one day I should just write about it all. Just write in my own words what I went through and how I felt. So one day I started typing away on notepad on our computer and it just all came out. I started from the day my parents told me we were going to Washington D.C. for my dad to do some testing because he could possibly be sick and have Alzheimer's. I wrote and I wrote, I cried, I yelled, I got mad, I got sad about things I didn't even remember until I was writing, then I cried some more. It was exhausting! It was like my own personal psychiatrist on my computer. I of course stopped from time to time because I am a stay at home mommy of four children and computer time for me is just about impossible. It has to be late and all babies asleep. By the time I got to the part of my dad passing away I had put myself back in time it seemed, reliving all those emotions and memories. It was really hard and it put my mind in a dark hole for a little while. When I got through that some days later I stopped writing all together. I didn't want to think about it anymore, I was pushing away again. My husband didn't want to push me so he left it alone, but every once in a while he would bring it up again that I needed to finish. He was right of course I'm so thankful he did. He is my rock! When I started writing again, it was like a whole new me. I felt at peace, I felt a huge load lifted from me. I needed to get those emotions out and I needed to say what I had needed to say for years. Now I can talk about it freely, and not cry as much. I just didn't do enough then because I was so young and didn't want to face the truth, but now I am an adult and I have my husband and children and other family members to think about as well as myself. So I'm going to spend every moment I have bringing awareness and help to research for this disease.
I had a wonderful childhood. My parents were perfect. The love they had for each other showed in everything they did. They raised my sister and I in a Christian home, instilling the up most Godly morals and beliefs. And of course loving us unconditionally.
I was thirteen when my mom sat me down and told me we were going to Washington D.C. to the NIH hospital for my dad to get some tests done because he could possibly have Alzheimer's.
She explained what it was and that my Grandma and Uncle had died from it, and thought my dad might be showing some signs. When you are thirteen life just happens. You don't have many responsibilities or worries, everything is usually great. I was a teenager now, right? I thought I could handle anything. So when my parents were explaining the process of Alzheimer's and what to expect, I just took it in calmly. " Yes dad might have this disease that his mom and brother had, he was going to forget things, and might act out of character, he would need our help, and he would eventually die. Ok, everyone does right? He's my dad I love him, and I will do whatever I needed to do for him." That is what I was thinking. I had no idea what was to come.
The only worries I had at that time in my life were needing earrings to match a new shirt, or what friend was going to come over, or if Michael was going to call me today. I couldn't see the future, it was all going to still be happily ever after in my eyes.
After 15 long days of my dad being at the hospital with machines, monitors, and cameras hooked up to him 24/7 the doctors were ready to give us the results. They said he did have the mutated gene that caused Early Onset Alzheimer's . They were very professional and explained all the tests and the steps our family would need to take for the future. There was a lot more talking but I don't remember much after that. My parents hugged and cried. I can't imagine what was going through their minds and how my dad must have felt. He already lost his mother and his oldest brother, and now he is being told he for sure has the gene as well. When we walked out of that room I left with a cloud over my head.
At this time there weren't many drugs available for him, but he was willing to try all the still in testing ones if it meant helping someone in the future and himself. He started taking a medication that just slowed the process of the disease down. It wouldn't stop it or cure it. He never showed to me how hurt or worried he was. He was always up beat and happy like he had always been. He said he would do anything for research to help scientist and doctors find out more and somehow find a cure. He knew what was going to happen to him, but still wanted to help others. He didn't give up hope, and never became selfish. We had to put it in God's hands now, and knew He would get us through.
The next year brought a lot of changes and hard decisions for our family. My dad had to retire early since he wasn't going to be able to fulfill his job responsibilities as he once had. He was a diesel mechanic instructor at Oklahoma State University Institute of Technology. He loved teaching. He loved anything with a motor and was always out working in the garage with something that would run eventually. He rebuilt a Volkswagen Bug for my sister when she turned 16. He built a go cart from scratch for me. Our garage was filled with lots and lots of mechanic parts. As a girl I probably don't even do it justice and he might be ashamed I don't know what was all in there, but I just know it was full and he loved it. So not only did he love it he loved his job because he was teaching what was passionate to him. Early retirement is something everyone probably would love to have, but to my dad it wasn't really what he wanted, not yet. The people in his department gave him a nice retirement lunch party and each told him how much they would miss him.
Along with having to retire he also had to give up on his most beloved dream. He had worked many hours to get his pilot's license and was co owner of a plane. He had devoted so much time into this plane and flying.
He would take me out to the airport and show me his plane. We would just sit in it watching the other planes land and take off. He would tell me how everything worked from inside to out. He absolutely loved it and couldn't wait to get in there and fly on his own. He and my mom were planning on doing mission work, taking food and other needed things to places that needed it. He would just light up every time he was around a plane and even after he got very sick he would love to watch them fly by. He was forced by this disease to give up something he had worked for so hard and loved so much. There aren't many people that get a chance to fulfill their dream of something, and he was so very very close.
My parents also decided to sale our house. This was hard for me because I had lived in this house my whole life. We needed to be closer to family for when my dad got worse and needed help. I know it was the right decision, but it was still hard for me to let go of what I've always known. It was like I was saying good bye to a house that held all my childhood memories and saying good bye to the life I once knew. Every memory of growing up was in that house. Every holiday, birthday, and family get togethers were all there. This was a pretty and sweet season of my life gone, and I was heading into a dark storm.
I started my 14th year out in our new house. It was fun moving into a brand new place and picking out new decor for my room. My mom of course is a decorator, so if we had an idea of what I wanted it to look like she bought all the accessories to match from top to bottom. It was fun, but I still missed my old home.
Another big step for me was starting high school. My mom had home schooled me since the third grade, and my parents decided it would be best for me to go to school since things at home weren't going to be the same. My mom needed to be there for my dad, and I wanted to go to public school again. I was a VERY shy person so I had a lot of anxiety, but I managed to deal and over come most of the shyness I had. It took some time, but eventually I made friends and began to be comfortable. I thank God I had a friend that also started this school the same time as me that I had known almost my whole life. She was older but we became very close. Since she knew my family and knew about my dad I didn't have to hide anything or pretend anyway with her. I of course didn't talk to her much about it all, but just to know she knew and understood was enough. I couldn't have done this without her there.
My dad was still driving and would take me to school. His words were starting to get harder to find and he would get so frustrated with himself. He was still healthy enough to go out and tinker with his tools and work on his old GMC truck. I would go out and sit and watch him mess around with the engine. It was just like when I was a little girl and it was great to still have that. I did get more busy with friends and became more distant about doing things with him at times.
When I started noticing that he was changing I got very distant and pushed it away. When a simple sentence like " I'm going outside." would turn into a long exhausting guessing game to try and understand what he was saying, I would shut down. I didn't have the patience for it and wouldn't except that this was my dad doing this. I knew this was one of the stages of the disease, but I hated it. This wasn't my dad, he was perfect and this man can't even talk normal. What happened? Those days to follow I was always annoyed, and had a really bad attitude. I was selfish, unthoughtful, and rude to both my mom and dad. I was always mad and to much in a hurry to do something else I never stopped to help. He knew what was happening and was most of the time aware of it. I hate that I wasn't there and I acted like this. My mom was strong and patient. She was dealing with her own misery and trials. How could I not be there for her either. She loved my dad so much, and I know she got frustrated too, but she was just awesome all the time. God made her a very special person and I am so thankful my parents loved Jesus and taught me to do the same.
I was very strong in my faith and would seek God's comfort . I know he was there even though I didn't understand why this was happening to our family. He was in my heart and he was keeping my head out of the rain. God also brought my wonderful husband into my life while I was going through this change. Michael had been there since before my dad was diagnosed and he was such a help to me through it all. We were young and of course immature, but he still knew how to make me see the good in things and make me happy. It was easy to talk to him but still I wouldn't open up completely to him either. It just became easier to fake a smile and pretend I was fine then to let any emotion come through, just bottle it up. The emotion I would show was between Michael and I. We were in high school and had all the drama that went with it. LOL
We went to different schools and had different friends so it was hard at times to see eye to eye on things. Despite all the teenage nonsense that doesn't matter at all now, we were meant to be, and I thank God for him everyday.
My dad was slowly fading but pretty happy most of the time. He laughed a lot at himself, especially when he would be trying to tell you something and a completely random word would come out in the middle of it all. He took his disabilities and laughed them away. He was probably embarrassed at himself, but he still always had a great attitude. He never showed to me how frustrated he would get , but my mom has told me at times he would get overwhelmed with it all. He was still aware enough to know he was doing something the wrong way, but his brain wouldn't let it come out. She has also told me there was a point before he got really bad that he talked about killing himself so none of us would have to go through this. Thank you God, that my daddy was a Christian man! I know he hated what was happening. He had all of us there for him, even if I wasn't all the time I know he knew I loved him. My older sister and her husband lived very very close, and they had two daughters at that time. They were always fun to be around, and the girls always brought joy to my dad. He was their J-Pa. Holidays and birthdays were still a big event. My mom made the best out of every situation so everything would still feel normal. She had to be everything to my dad and everything to me and still fulfill her needs all at the same time.
She tried many times to talk to me about what I was feeling, but I always said I was fine. Like I said before it was easier to bottle it in then let any out. She had really great friends that helped her all along the way. She also joined an online Alzheimer's support group, so she got to get things out and had people to talk to that were going through the same thing. She also talked to my Aunt Gail, which was a tremendous help. She lost her husband to this same disease years earlier (my dad's oldest brother). I wish I could have seen how I was then so I could have been there for her more and made things easier on her. I was a brat most of the time and rebelled, and was completely rude. As an adult and having my own children now, I hate how I was towards her as well as my dad. I don't care if I was a teenager I should have never been so bitter.
I cried a lot during these days. Only at night in bed by myself. I never wanted anyone to hear me so I did it very quietly. I would replay the day in my head and hate how I had treated my parents. I hated what was going on and hated my attitude towards it but just couldn't change it. I would pray and pray that the next day would be different, but I always acted the same. My dad was still not getting better and that is what I was suppose to pray for. He was taking medication that could only slow down the progression of the disease, but God could cure him, right? I always hoped that one day after being at the doctors office for more testing they would come home and say he was all better. That the medicine he was taking stopped the disease and he was going to live until he was 100. I wasn't in control, and I didn't understand why He was letting this happen. My dad was only getting worse every day not better.
I think we would all go back to some point in our lives and do something differently. Mine would be to not hide under my rain cloud and spend it out in the sun with my dad.
Towards the end of my Junior year of high school my dad was fading more and more. Our church had a service for healing and laying of hands on my dad, which was very moving. An Evangelist came to our house and prayed with healing oil for him. We prayed for it. To have faith you believe and trust in for which there is no proof, a complete trust. What was I suppose to have faith in if every day never got better. To Hope for something you expect with confidence. God is suppose to hear our cries and help when we are in need. He is a loving God. I didn't feel like he was at this time. He healed others, why not my dad? By the way, this is what I felt at the time, not now.
I started having anxiety attacks almost every day, but of course didn't know this is what was going on then. I just thought I was going crazy too. I started having horrible headaches and stomach problems. I think one person can only bottle so much in before it literally starts to eat your insides away.
I went to the doctor to get these issues taken care of, but the headaches never stopped completely. My head was always filled with worries, nervousness, insecurity of myself, and death. Things were certainly not ever going to be the same. My dad was never going to be the same person and there was not a thing anyone could do. As children we take our parents for granted. They raise you, love you, provide for you, they are your caregivers, and friend. You just automatically think this is how it will always be, and when you become an adult you will still have them there. I wasn't going to get a relationship with him as an adult. My sister, Sherry is ten years older than me and I know she struggled too, it wasn't all me. She got to know him as an adult, and she got to have him there for a longer period of time. We never talked about it, but I know she was hurting as well.
By now my dad was almost impossible to understand, and he was getting where the joys of doing things he use to love didn't excite him anymore. He watched T.V. a lot and became very irritable very easily. My sister would bring her three girls over who loved their J-pa and wanted to play, but he just didn't seem as happy to see them. He would handle it for a while, then just become annoyed at the sounds and commotion. This was hard for me to see, because he loved kids, and especially his grand babies. I would get so mad at him for being this way about them. I know we all knew this was the disease making him act this way, because he would NEVER ever be like that, but I think feelings got hurt anyway. I hope the girls do have good memories of him, and remember him how he was before this time.
He was happy at times, and was still loving. He would still try to ask how my day had gone and how things were. Because it took so long to get out I usually just shot him down with some rude expression, or one simple word just so I wouldn't have to stay longer to talk. (That is awful of me!
Even though I was hateful it still meant so much to know he was still there enough to care and ask. He was such a great dad. Always!
Things were really starting to change by this time. My dad was starting to progress further into the stages of the Alzheimer's disease. He was getting harder to manage, and ran away from church once, which was very scary. He tried opening the car door as my mom was driving them down the road. He would hide outside from my mom and would do things that you only thought a child did. He was confused a lot and couldn't make sense of normal everyday activities. This comes with the disease, but it is harder to deal with when it is actually happening.
My life was filled with Senior year of high school. I was doing Telecommunication training and job shadowing in the morning with a program from our local Vocational Institute. I thought this is what I wanted to do after graduating. And of course after school was spent with the love of my life, Michael. He was sticking with me through all of this. He was my best friend, and still is. He loved me for reasons I didn't even know existed, and he respected me and my wishes. I couldn't see myself with anyone else ever and be this happy. So after talking with my parents one day while I was at work he asked their permission to marry me. Even in those days when my dad wasn't always coherent, he gave Michael his blessing. So in January he surprised me with an awesome proposal and we were going to get married sometime after we graduated. There were people that told us we didn't know what we were doing, we were to young, we needed to wait until after college. I can understand how it may have seemed to some, but we knew what we felt and we knew God brought us together. Someone once asked me later if I got married just to get out away from home. Absolutely not! We had something special, and we both knew it was meant to be and we had God and our parents blessings. And yes, we still have that same love, but stronger, almost 11 years after being married.
My mom was a huge help in planning the wedding. She loves that kind of thing and it helped her take her mind off of hard things. We got married in August of 2000. It was such a great day. My dad was well enough to walk me down the isle and that is such an awesome memory. I'm so thankful he was there for that. My mom and dad gave me away and I left the church that day feeling on top of the world. A dream come true. We had only been talking about spending the rest of our lives together since 8th grade. =)Photobucket We spent the next day at my parent's house opening gifts and visiting with the family that had come in for our wedding before leaving that next day for our honeymoon. That night when we left, my dad pulled Michael aside and told him to take care of his little girl. I didn't know that then, and I cry every time I think about it. Why was I so distant to someone I loved so much? This is what has taken me so long to forgive myself of. Being distant while I was at home and getting more distant and pulling away after I left.
Our first year of marriage was fabulous, and we were adjusting well being on our own, working, and trying to be adults. Neither one of us had ever been on our own before so this new life was a little harder then we expected. We made it through though and it all turned out great.
My dad was starting to get aggressive often and became more disoriented then before. He was starting to not recognize himself in the mirror and was harder to calm down. My mom and dad came over once to our house, and he started yelling and hitting at a picture on the wall because he saw his reflection in the glass of the frame and didn't recognize himself. This was the first time I had really seen him get so angry and it of course upset my mom and I both. She had to take down the mirrors she could and cover the rest in their house with sheets because this was starting to be an everyday thing.
He was being aggressive towards her at times because he didn't recognize her or would just get mad at something and flip out. He even thought she was him mother at times. She never told me the extent of what he did until later. She didn't want us to know what was going on, and be worried. She needed help but wouldn't ask. I know she was just doing what she thought was best by not burdening anyone with her situation. I'm sorry she had to go through that.
When an Alzheimer's patient is under stress or a very stressful event, it starts a chain of reactions in their brain that can send them farther into the stages of the disease. I'm not a doctor but I have been told this. One day my mom had taken my dad to one of his normal check ups at the same doctor he had been seeing for years now. I'm not sure what set him off, but my dad became very angry with the doctor and he feared for his life. For those of you that didn't know my dad, he was a pretty big man, and he was still very healthy looking so he could be intimidating for someone that didn't know him well. This was his doctor he had seen since he got diagnosed so you think he might have known my dad well enough and would have known how to settle him down. That is neither here nor there and I won't put down any professional. I just think he could have done something differently. He called security, which only made my dad worse because he didn't understand what was going on. They took him up to the psych ward at the hospital. The doctor's office was located next to the hospital. They gave him a sedative to calm him down and wouldn't let my mom see him. My mom called me at work and asked if my sister and I would come get her because she was to upset to drive. She was a nervous wreck to say the least. The very nice professional doctor who was an Alzheimer's specialist was kind enough to tell my mom he wouldn't press charges against my dad. Oh how nice of him. blah. The next day we were allowed to see him. I drove my mom back to Tulsa and we had to walk into the psychiatric ward to a locked down room where my dad sat just motionless, no expression, and completely out of it. This man sitting there didn't deserve to be treated like he was a ax murderer or be that drugged up he couldn't even feed himself. The next day we went to see him, still sitting in this locked room with only three chairs, but he looked more like himself that day. He was coming out of this drug induced coma and he asked to go home. The hospital wasn't releasing him yet, so we stayed a little longer. I think these people could have handled this situation a heck of a lot better. This is another reason I'm doing this. I want doctors and facilities to be more aware of this disease so they know how to handle things unexpectedly that are normal stages of Alzheimer's. He wasn't angry all the time and he still had a soft spot for us. Even in this horrible place he showed his true self. I was pregnant with our first baby, and my mom said, "Sheryl is here, isn't she getting fat?" Of course she was just joking because I was pregnant, but he didn't like her saying that and gave her a very dirty look. We laughed then he laughed. She told him I was having a boy and anyone that knows our family knew this is all my dad ever talked about was wanting a boy. He would say "girls, girls, girls" with a shrug of his shoulders and hands up like he was asking a question. He was only joking which he did a lot of. He was finally released under his doctors orders. Unfortunately, the sweet spirit of my daddy that we could still see glimpses of didn't show much after that, and things were starting to go down hill fast from then on. He went in to an appointment progressing the same way he had been for so long, but left like he had progressed ten stages in three days.
A short note
I just wanted to take a minute to thank everyone that has been reading and commenting. It really means a lot. I am writing these stories from what I have already written in a journal. It is still hard sometimes to re-write it on here to make it make sense to the world, but I am not reliving it right now. I already did while I was writing it the first time, and these next few posts were the hardest to let out, but were also the most healing. This is when I started to let go of the bitterness, and started to forgive myself. (after of course I got it all out)
I am not writing or trying to get followers for myself. I don't want sympathy or anyone to be sorry for not knowing these things while it was happening. I could have let anyone in, but I chose not to. I am telling my story because there are young people out there with parents or grandparents going through this same thing. After I write my journal entries I want to start hard and heavy with the facts, and possibly a support group. I have sent my paperwork off to Indiana to start the research study the DeMoe family has been participating in. I will be posting the information about the study soon. I don't know exactly when I will be going to do the study, but I will post that info too. Thank you everyone for spreading the word. Please continue to do so and continue to comment. Any comments are welcome.
This has been sitting on my post board waiting to be published for days now. This was the hardest part, but also the most important. If there are a million typo's please overlook them, I have read and re-read and I am just going to publish the post like it is. I caught myself slipping back into the "this is really dumb and why do it" mode. It is so funny how certain memories can put you back into a mood you thought was gone.
My dad wasn't coming back out of this fast progression into his stages of Alzheimer's that he had gone into after that awful day at the doctor's office. He was becoming violent and mean. He wasn't the same person at all.
After about a month of this and stress beyond imaginary my mom decided she could not take care of him on her own. He was starting to hurt her. She didn't want to send him to a nursing home, she wanted to take care of him. In sickness and in health, this is what she lived by. But this was out of her control and my sister and I reassured her she was doing the right thing. She took him to a nursing home that had a separate wing for Alzheimer's patients. He was still coherent at times to know what was going on so he tried running away from there. I'm not sure how many times or what the facility had to do, but they called her and told her they couldn't keep him there. So she had to go get him, find another place to take him, all while dealing with the stress and guilt she was feeling for doing this in the first place. She found another place and tried it. By then he had gone through another traumatic experience so he was a little less active. My sister and I went to visit him on Father's Day. He smiled and laughed at things. He was trying to cover up his hurt and confusion. He kept trying to ask why he was there, and when he could come home. I think he thought he was there visiting also. It was very uncomfortable, and sad. I know if he really knew what was going on he would have expected this, because he never wanted to be a burden to anyone. But... he wasn't and I felt like he was feeling betrayed and alone. I prayed he would calm down and God would give him peace at this home.
That June Michael and I had our first baby. One day after my mom's birthday, June 21st 2002, and this was also Michael' s grandmother's birthday (June 20). It was so exciting and scary at the same time. He was perfect and healthy. We were both high above any clouds that lingered over my head. I fell in love with my son and more in love with my husband. My dad would have been so proud to have a grandson. I wish he could have been there, but I know it was impossible. We started our family life, trying to adjust to a newborn. I had taken off work two weeks earlier so I only had four weeks left after we got home from the hospital. I thought I was suppose to stay home, and this is what God has always wanted me to do. Well, I came to realize that sometimes mom can't stay home and He is ok with that to. My sister volunteered to watch Mic for us, and I thank God she was there to do this. It made my life a whole lot easier, because I wasn't worrying constantly about my new baby being left with a stranger. He was being taken care of and loved tremendously. I still don't think I thanked her enough for this, it was such a blessing.
By this time my dad had been moved once again to a different home much farther away. We could only go see him once a week and every time he seemed to be a little more gone each time. I took Mic to see him once, but he didn't even know we were there. I know deep down he would have shown some emotion that day but he seemed to clouded with sedatives. I don't know if this is standard procedure (I know at first they must have had to keep him calm), but he wasn't moving or looking around, it was awful. My mom went more often, she was so strong. I know she was hurting also, but she still loved him so much. She would hug and kiss him, talk to him like she had always done before, but he did nothing. He became worse everyday. He got sick once and had to be put in the hospital. He got better and went back to the nursing home, but he didn't sit in his chair anymore, he just laid in his bed. Really completely gone.
On Mic's first birthday we found out I was pregnant again. It was so hard to be happy with everything God was giving me while my dad was so sick. I could only find joy every once in awhile. I was so happy with my life as a wife and mommy, but that cloud over my head was so dark it seemed to block more sunshine and joy than I really wanted. My mom told us she was thinking about bringing my dad home and have hospice come out and help her take care of him. I of course didn't get it then, so I thought this was a horrible idea. I didn't think she should put herself through that stress, but she knew it was getting closer for him to die. She tried to prepare my sister and I for what it was going to be like, and what the near future was going to hold. I still didn't show any compassion to him once he came home. He was laying in a hospital bed hooked up to an oxygen tank, in our living room. My mom took care of him mostly because the nurses would only come out once a day. I hated that I still couldn't accept this, and still couldn't show him I loved him.
On September 17, 2003 my mom called me at work and told me I needed to come home, because it was time to say good-bye. I had that all day morning sickness with this baby, but it was nothing compared to the nauseating feeling that took over my body when I heard those words. It was like I got stabbed in the heart with a knife that very moment. I told my boss I needed to leave and of course they were all very kind and expressed their sympathy, but I didn't even cry. I was numb.
I thought it would be like you see in the movies, when you get to your loved one's bedside and you hug them and say goodbye. That person says something comforting and everyone feels so peaceful, they just closes there eyes and go to sleep forever. Ok, that is a fairy tale. He wasn't responsive to anything but he was still living and breathing on his own, but he could go any minute. So we waited. It was horrible. My mom said I should come talk to him. I wanted to, I really did. I wanted to tell him to get out of that horrible bed, hold me and tell me I was going to wake up soon and I had only been having a bad dream. I wanted to tell him I was sorry for how I had acted to him all those years and not understanding any of it. I wanted to say so much, but I didn't. I don't know if he could hear us or even see us, but my mom didn't care. She was talking, hugging, kissing, him and I just pushed it away. I did at some point that day go over and hold his cold skinny hand. This was certainly not the hand that I use to hold when I was a little girl. It was always warm, and strong. He was so little and old looking, like a fragile old man. This was not my dad. I still didn't say anything, I could not make myself. I hope he felt the love through my hand and he wasn't waiting for me to say good-bye. I of course didn't want him to suffer anymore, but I couldn't say bye. I didn't want to. This was another regret I carried for sometime. Not saying what I needed to say when I had the perfect chance. I know now it is not worth beating myself up about. I had to let go of that when I let go of it all.
We were all there and friends that we have known my whole life that loved my dad, and never left us during these years were there. They were all taking turns saying good-bye and being a huge support to us all. I just wanted to be somewhere else, anywhere else, but there.
It was finally time. My mom was holding his hands crying, looking into his eyes, talking to him. My sister and I were on the other side of the bed holding his arm. He stopped breathing for a second, then gasped. Stopped, then gasped. Then finally, so we thought, was a final breath. My mom laid her head on his chest, I was confused and insecure. My sister hugged me, then all of a sudden he gasped again. What?? He has always been awnry so I think it was just God giving us one last little laugh, because this is what my dad would have totally done. It did make us all giggle a little, more of an uncomfortable giggle then funny. He did breathe his last breath after this and was pronounced dead. I know the funeral home came and got his body, and there were so many people in and out for those next few days. I was in a blur of emotion, and I think that is normal in this situation. The funeral was nice. (I guess you can say a funeral is nice) My sister's father in-law was the speaker at the funeral. ( I don't know the exact words) There is no one else that could have done it better. It was great to see all the people that did come to show respect and that loved my dad. I still never cried much. I hurt, but couldn't show it. My regrets and guilt didn't set in fully then, but I knew I had missed my chance of feeling better way to many times, and now my daddy was gone. Forever! I know he was with Jesus now so I felt better about that.
After I had our second child, our first girl, my stress level went through the roof. I was still working and the everyday life of a full time job away from home and at home was very overwhelming for me. I was still bottling everything up. The tiniest thing would set me off and I would cry. Then yell, and be mean to my family. It wasn't fair for Michael or the kids. I felt like I was going crazy inside, but I still never knew how to let it out appropriately.
Holidays, and visits to my mom's weren't the same. I know everyone has to deal with this that has lost a parent. I never talked much about my dad and it was eaiser now to block out the past years because he was gone.
Michael and I sold our house, changed jobs, and had our third child all within a year. Talk about stress. =) (I was pregnant with her on Shelby's first b-day but didn't find out until a few days later, some kind of repetitiveness going on. lol) We decided to try it on one income so I quit my job. Daycare was just to much, and I hated being gone all day to just come home to fix dinner and say good-night. It worked for about eight months, then back to work I went. We just didn't know how to make it work. All this time I still had not let anything go, I still hated myself, still was aching inside, and still very bitter about it all. I went to a couple different phychiatrist only a couple of times, because I was overwhelmed with emotions and it was literally killing me. I still didn't open up to them completely and I really felt like it was a waste of time and money. Yes they work for some people, but I wasn't ready. Next, we got pregnant with our fourth and final child. I know what you are thinking... "don't you know what causes this?" And yes, we do. I also know that contraceptives don't work on every single person in this world either. I get pregnant if Michael just looks at me wrong. ha ha. So, we decided we were going to HAVE to make it work on one income, and the Lord does supply when you need him. Michael got a very good job, a lot closer to home so he wasn't commuting two hours everyday, and my best friend needed a babysitter for her 8 month old son. It was great!
I began to slowly break down that huge cloud I had put up all around me since I was 13, and I began to accept and grieve over my dad. I talked to Michael and he helped me through so much. I began to talk to my mom, and I began not to feel as bad about myself. She reassured me as she has done everyday, that my dad knew I loved him and I was only being a teenager. I have asked for her forgiveness, and asked God's as well. I finally, after months and months of contemplating it, decided to start writing. As I said before it was my outlet, and I am completely at peace now. It was very hard at first, then harder and I wanted to stop. I thought it was stupid to put myself through it all over again, but it really did make me stronger. I'm not saying this will work for everyone, but it is so worth a shot. And I did think I could get through this without crying because I was only re-writing from my journal,but I didn't. I did feel like I may have gone over board at times so I left somethings out. I can't even explain some things well enough or tell you what really happened after I began to heal. I have become a better wife and a better mom since I let all that go. I have a better outlook on life in general and I can't believe I lived so many years the way I did. I know now I am ready to face this disease head on. I want everyone to see what it does, and how important it is to help with the research. Most people think it is only for the old, and it is not in the DeMoe families case and many others. I want awareness, but more than that I want a cure. I don't want the medication that just slows down the progression, I want it gone for us all. Scientists are working everyday to find this, and have come such a long long way since my dad was diagnosed. We have to keep this going. I know there are also people that have other fatal diseases in their family, and I think they should stand by their fellow fighters and help any way they can. If we don't fight for something, we will just give up.