13 Jan 2013
Seems like it's been forever since writing in my blog. Christmas went great. We had a great time at Jim's Moms house on Christmas eve with the family. Chris dressed up as Santa again this year and handed out candycanes. Everyone was so kind to him and sweet. Christmas morning Chris saw that Santa had been here. He had left cookies and eggnog out for Santa. We had a nice breakfast, openned gifts and then later in the day went to Moms. It was really nice at Moms too and we all had fun. Chris did really well. The next morning I went to the doctor for my allergy shot and then we headed to West Virginia for a week. Chris did pretty good on the trip but would get really tired each day. It was cold snowy and slick at times. He really hated the snow. We thought he might like it since we grew up with lots of snow but he didn't. He is very concerned with the sun now and always ask me if it's going to be sunny. Each day he would talk about the sun coming out. No such luck with all the snow and sleet. On the last day as we were heading out the sun came out. Chris was very happy. He had trouble with riding long amounts of time. When Chris would get really tired he would lean and a couple times his head was completely resting on his shoulder. It really worried me. After a good nights rest, he was fine the next morning. He did choke on our last night in the hotel room. He spit the chicken nugget out and was okay. Note to self: no more chicken nuggets. We had a wonderful time in WV and got to see everyone but we were all so glad to get back home. Chris had his doctor appt with our family doctor and I mentioned physical therapy to strengthen Chris' muscles so we can keep him from ending up in a wheelchair. the doctor said that medicare wouldn't cover it due to him having Down Syndrome and Alzheimers. That's like being discriminated againist him because of his disability. I don't understand how they can be so cold. I'm not giving up on it though. I'm going to check with the neurologist and see what he says. I really like and respect our family doctor but I'm going to do whatever I have to do for Chris. It's all about him. Chris is still declining at a fairly quick rate but he has moments that are so clear and insightful. He told me last night as we were watching a movie that he sure wished that Jesus would heal him. Breaks my heart to see him so worried or concerned. He shouldn't be worried about anything. He should have carefree days of fun and laughter. I've got to go tuck him into bed now. We have a full day tomorrow with lots to do.

13 Dec 2012
Still trying to get Christmas going in our home. I do have Chris' tree up in his room and decorated. Lights up and decorations scattered around in his room and he loves it. He's so excited for Christmas. Yesterday (actually the 11th) I was driving to my doctors appt and hit a deer. Messed up the jeep and Chris slept through it. It almost made it across but not quite. Chris talked about it all day yesterday how I hit one of Santa's reindeers. I told Chris if that was one of Santa's reindeers, then I can look forward to sticks and a lump of coal for Christmas. Chris is still doing pretty good for the most part. He certainly has his moments of fog and confusion but he has been smiling and laughing more and that's awesome! He loves Christmas so much and maybe this time of year with all the decorations and talk of Christmas and gifts and Christmas music it's really triggering memories with him. Whatever the reason, I will take it. Tomorrow we have to take the jeep to the shop for them to estimate the damage, do some more shopping, get groceries, get Mom's medicine, and maybe if we can, go look at Christmas lights. I thought we would see if Mom wants to go with us. I think she would enjoy it. I'm still working on getting the tree up. I just don't have enough time in the day to get everything done. How in the hell did our ancestors raise a family, take care of all the kids and the house and chores?????? I can't seem to get anything done. Oh well, the world won't end if I don't get all the decorations up that I usually do. I'm just doing the basics especially since we won't be here right after Christmas. Chris is talking in his sleep and I had better get to bed too. It's 2:34am of the 13th and we have alot to do later today. Got to get some sleep.

7 Dec 2012
We are now into December and I feel so behind on everything. I am working on my Christmas cards and hope to be able to mail them tomorrow. I'm not sending out as many this year and I hope everyone understands. Chris and I have done alittle shopping. Need to do alot more but we'll get it done. I'm stilling working on decorating. I have the tree in the house but it's not decorated yet. I do have lights up in Chris' room and some decorations and he loves it. Most days have been really good for him. He has his moments but overall has been pretty clearminded. We are going to Jims moms for Christmas eve but will be coming back home that night. I'm hoping we will be able to go to Midnight Mass which will be the first time since moving to TN. Christmas morning will be Jim, Chris and me at home. Chris will get to find his presents under the tree (this could be a first for Chris). Later in the day we are going over to Moms and have Christmas with her. The next day Jim, Chris and I are off to West Virginia for a week. We will be celebrating my birthday in WV! Awesome! We are also celebrating news years eve there. Should be a great trip and I am hoping that it works out good with Chris. He's excited about the trip and I think he will do good. Will just pack LOTS of clothes, pads and etc.. for him. Also, it will be alot colder there so we will bring lots of layers and heavy coats. I hope there is alittle snow for Chris to enjoy but not too much which they usually get. I love WV but I don't want to get stuck there lol.

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.