26 Nov 2012
This morning I got up to get coffee started and there was Chris sitting in the family room with a big grin on his face. I went in and said "Well hi!" He told me that he got up and didn't want to go  back to sleep so he came out to the family room. I asked him if he was scared or thought he was alone and he said no, that he was letting me sleep. So began our day of complete clarity for Chris. He wanted to stay out with me all day so we watched Christmas movies, talked, laughed, looked at old pictures and sang Christmas songs. Chris talked about each picture and could identify every person in the pictures, even the old pictures. He hasn't been able to do this for months. Chris talked about everything and he smiled; really smiled. My Chris was back. The boy I grew up with and had so much fun with. I couldn't believe how clearminded he was. When he finished his coffee, he yelled in at me in the kitchen " Do we have rootbeer?" He hasn't asked for much of anything for so long now. I was elated that he was asking me ordinary questions. I got him rootbeer and fixed him lunch and he ate every bit of it. This lasted most of the day. Then he started looking around the room and I saw that frown look that he has alot now. I asked him questions and he just looked at me. My sweet brother was gone. He went back into the fog that he lives in now. My heart broke in two. I lost him again. I wasn't ready to let him go. I wasn't ready for this wonderful day to be over with. It was like a death of sorts. He slipped away. I led him into his room, changed his pads and got him settled into bed so he could watch his TV. Homer was all snuggled in by him purring, I leaned over and kissed him and left the room. I cried. I felt such a loss and was mad but then I thanked God for the precious gift he gave Chris and I today. I am thankful for today and what Chris and I had together. I hate this damn hateful disgusting devastating disease with every fiber of my being. I love Chris more than anything.

23 Nov 2012
Thanksgiving turned out great. The food came out perfect and time with Mom was nice; no drama and not too much tension. Today was hard with Chris. Bed was wet this morning so I got all clean bedding on it and this afternoon he wet it again. Not just in the usual place but also at the end of the bed. Can't figure that out unless he sat down at the end. He also wet on the rug by his bed. I am so frustrated. I got him changed again and the bed changed again and now I'm sitting in the family room crying. I don't think I can do this. I feel so helpless and so challenged. I know that tomorrow i will probably feel different but right at this moment I feel worthless. I feel like a failure and I get frustrated at Chris and he can't help it. he's such an angel. How can you get mad at an angel? I love Chris so dearly and when I feel like I can't do this I feel like I'm letting him down and that makes it even worse. I need a break. I need some stress relief. I need a kleenex.

21 Nov 2012
Well, it's the Thanksgiving eve and I am thinking of all that I am thankful for. I am very thankful for such a loving caring husband that is so kind and helps me so much with Chris. I don't know what I'd do without Jim in my life. I am very thankful that Chris is living with us and that I can care for him. It is hard at times but I am so thankful to be able to have him at home and care for all of his needs. I know that someday that might change but for now all is good. I am thankful for a roof over my head and to be able to be debt free and be able to pay our bills. I am thankful that we always have plenty of food on the table and really want for nothing. Our needs are simple and we like to live as simple a life as possible. I am very very thankful that Chris for the most part always knows who I am though there are times that he forgets. He forgets who other people are but perhaps because he is always with me and we interact all the time, he is able to remember me. Whatever the reason, I am thankful. Tomorrow we are going to Moms. I am fixing the dinner and taking it. I'm trying to make it as simple as possible but it's never simple when dealing with my Mom. I am making a roast with carrots, potatoes, onions and celery. I am also making a turkey breast with the works. The reason for both is that Mom wanted a roast and I am trying to make her happy *sigh* Chris said he wants turkey and dressing and cranberry sauce so I am trying to make him happy too. I don't care and Jim doesn't either. We'd be happy with a pizza. I think I have an ulcer and went to the doctor and the doctor thought it was my gallbladder. He ran bloodwork on me and I went to the hospital for an ultrasound. I feel like crap and yet I am crazy enough to try and do thanksgiving dinner. Why? Because I am trying to please everyone. Story of my life. Anyway, I have no problem making it a nice thanksgiving for my sweet Chris and it might be the last thanksgiving with Mom so it's all good.

16 Nov 2012
My posts are becoming farther and farther inbetween. Life is taking up more and more time. Some days are good some days are bad. I was thinking today how much Chris has lost in almost a year since being diagnosed. I thought of it today because when we got home, he couldn't remember how to turn on the light in his room. Things have changed so much. The things he use to do and has now lost is staggering. He chokes on everything now, even his beloved coffee. He can't lift big drinks to his mouth now so we use small glasses with lids, like sippy cups. He has lost control of his bladder and bowels. He doesn't even know when he goes now. He can no longer dress himself. He has lost interest in his favorite shows (except Andy Griffith which he still loves). He forgets who I am, who Mom is, who Jim is. He can't remember how to get out of the bed in the morning. I have to cover him with a blanket because he can't get the blanket up on him. He can't write anymore, he can no longer read and he no longer sings which he loved more than anything. His muscles have become so weak that he has trouble holding a spoon or fork. He has to use a walker to get around now and I'm afraid it won't be long before he will be in a wheelchair. I miss the Chris I grew up with. Don't get me wrong; I love Chris dearly and I am very fornuate to have him and we still have alot of fun together. But......I miss the old Chris that sang at the top of his lungs with me, who joked with everyone so much and teased everyone. I miss Chris chasing me in WalMart when we shop and hiding in the next aisle to get me. I miss his interactions with me and everyone and I miss our conversations. I miss his beautiful smile; he doesn't smile much anymore. I miss the sound of his laugh. He use to laugh so easily. I have to really work it now and tickle him to hear a laugh. Even then, it's not the same. I miss so much yet when I look at him I KNOW he is there. He is in there. He's still my sweet brother. The damn hateful disease is robbing us of Chris. Sometimes it makes me so mad! Then; it makes me so sad! Have to go tuck him in bed and get some rest for another day.

31 Oct 2012

Happy Halloween! The party was alot of fun at my sister in laws. Jim couldn't make it; he was stuck in traffic in KY because of a HazMat spill on the highway so Chris and I went on by ourselves. The costumes were a hit. Chris looked so good and he really got the attention :) I'm the one with the pink wig and my sister in law Carol is the witch. We then spent the night with my mother in law because I didn't feel like driving 2 hours back home. We really had fun and I miss all of them so much. I don't get to see them that often so Chris and I are going back in a week or so and spend the night with Mary, my mother in law, again. She is so kind and sweet to Chris. She really loves him and he is crazy about her too. We are still doing our daily drives. Chris calls them field trips. Today we went to the post office and rode around alittle. Met Jim for a late lunch and Chris liked that. Tomorrow we are going to the store to get Mom groceries. Chris is not standing straight upright anymore. He leans over alot. I told him yesterday to try standing straight and tall and when he did his face went kind of white and he said his back hurt. I asked him where and he pointed to his lower back. Then he said he needed to sit down, he couldn't stand any longer. Another thing to watch with him. I don't know if he hurt his back, his back is weak from lying in bed alot or sitting in bed watching tv or if it has to do with his muscles weakening due to alzheimers. If it bothers him or his standing or walking gets worse, I will ask the doctor. I guess they could do xrays but then what? I very much doubt they would do surgery since going under anesthesia is somewhat of a risk for someone with Downs and also the alzheimers plays a part in that. My appointment at the allergist was interesting and informative. The doctor believes it was fire ants that stung me, not a spider bite. So, I go back for allergy tests on all venom insects. At least I feel really good now and am not so worried about getting bit or stung again. We do have fire ants on our property (they are everywhere around the state) so we have to watch out and see about getting rid of them. I worry about Chris too because he probably wouldn't pay alot of attention to ants or something like that around him. Am posting other halloween pictures from the party. One is of our nephews girlfriend dressed as a cowgirl. Chris really took a liking to her and she was so sweet and attentive to him. We are blessed to have such great family and friends in  our life that are so kind and caring.

26 Oct 2012
It's been quite a while since posting anything. Have just been really busy. Last weekend Jim, Chris, Mom and I took a weekend trip to the Smoky Mountains and over into NC. It was absolutely beautiful. The colors were breathtaking. I think Mom really enjoyed it. She had never been to eastern TN and NC. Chris had a good time too and evidently really enjoyed riding around because he has asked me every day since then if we can take a ride. Unfortunately, when we got home I got bit by something (I think a spider) and went into anaphylaxis. Jim and Chris rushed me to the emergency room and they took good care of me. If I hadn't gone I would be dead. Monday I go to an allergist and get to have the fun fun allergy tests done. It's important to find out what I am allergic to now. I have always been allergic to alot of stuff and had allergy tests done years ago but things can change so will be good to know what I'm dealing with. I now carry an epipen with me at all times now. Chris was so sweet during all of this. He was sitting in the ER room with me and he kept looking at me and asking me if I was going to be ok. Then he would ask me if I was still kicking. I would lift my foot up alittle and give him the thumbs up. I couldn't talk very well and I would try to smile but it was hard to do. My face was completely swollen and my lips were huge. Would have been a really scary halloween costume. The amazing thing is that since then Chris has been so clearminded. Every day he has been very alert and talkative and wants to go places so off we go. Sometimes it's just into town but he is happy. Tomorrow we are going to Jims sisters halloween party. Chris is going as a scary clown. He will be dressed to the hilt. I am going as a streetwalker and Jim is going as Romney. Should be a great time. Chris is super excited about the party. He talks about it nonstop. I hope he has a great time. I'm sure he will. We always have so much fun with Jims family. They all love Chris so much and treat him so special.

4 Oct 2012
Well, this past monday I took Chris to the neurologist for his checkup. He is now on 100mg of Topamax longterm because of his seizures now. The doctor once again reminded me that Chris will not get better, he will get worse. I understand that they have to keep people in a reality check and prepare the family but I wanted to scream out "I $%@&! KNOW AND I DON'T NEED TO BE CONSTANTLY REMINDED!!!!!!!" It was a sad day and I wanted to cry all day. Just sad. Chris was in his fog most of the day. I had to feed him at the restaurant because he was shaking so much. Overall, he did pretty good though. Tuesday we had to take Mom to her appt. and once again Chris was in his fog. While we are sitting in the waiting room all of a sudden Chris looks at me and smiles real big and says "I know you!" I said you do? Who am I? He said "You are my sweet sister!" The clouds lifted, the angels sang and my heart soared.  He was just beaming and said he was so happy he was going to cry. He kept on hugging me and kissing me. I told him don't cry because then I will cry too. A little old lady in the waiting room said she was ready to cry too. Every person in that room was touched by Chris. They were all commenting about how sweet he was. This is why Chris is still here. He brings joy to all. He moved everyone that day and it didn't end. We went to the restaurant across the street for lunch and even though Chris was slipping back into his fog, the waitress and employees there were so kind to him and even fixed him an extra special bowl of ice cream. Chris brings peace and love and joy everywhere he goes. He makes people happy and the world needs people like him. I am so very proud to be his sister and am blessed that God chose me to be his sister. Sad days but Chris' love see's us through.