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.
Wednesday, November 21, 2012
Friday, November 16, 2012
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.
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.
Wednesday, October 31, 2012
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.
Friday, October 26, 2012
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.
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.
Thursday, October 4, 2012
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.
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.
Sunday, September 30, 2012
30 Sep 2012
Today, Jim, Chris and I went and got my Mom and took her out to eat. It was a real nice day. Chris did well and ate really good. I couldn't believe how much he ate. Chris has been so extra extra sweet here lately. He is always sweet but lately he has been giving lots of kisses and hugs. So sweet. He had another small seizure last week so his dose of Topamax has been doubled. It seems to have helped because he hasn't had anymore seizures. He got up night before last and I was in the kitchen and saw him walking into the family room. I asked him what he was doing and he said he was looking for something. Couldn't ever figure out what he was looking for and he couldn't tell me so I directed him back to bed and tucked him in. I told him we would find it in the morning and he went back to sleep. These kind of things are happening more and more. On an upnote, Jim told me that he planned something for me on Saturday. When Chris and I got home from town friday evening, I asked Jim what it was and he told me he had booked an appointment for me at the Spa. An all day visit to the spa. I got a facial, full body massage, lunch, mani and pedi, hair trim. Jim said that I needed a break and some pampering because I had so much stress going on. Saturday morning I got up and Jim made me breakfast-ham and cheese omelet, orange juice and toast. How sweet can you get? He is absolutely the most thoughtful, kind, sweet husband. How blessed am I to have him? He is so sweet with Chris, my Mom, and he takes such good care of me. I thank God every day for him. He makes every day special but saturday was a day I won't soon forget. Tomorrow is doctors appt for Chris at the neurologist, and then foot doctor appt in the afternoon for Chris and Mom. It will be a full day in Jackson for us but will make the best of it and we will make it a fun day.
Today, Jim, Chris and I went and got my Mom and took her out to eat. It was a real nice day. Chris did well and ate really good. I couldn't believe how much he ate. Chris has been so extra extra sweet here lately. He is always sweet but lately he has been giving lots of kisses and hugs. So sweet. He had another small seizure last week so his dose of Topamax has been doubled. It seems to have helped because he hasn't had anymore seizures. He got up night before last and I was in the kitchen and saw him walking into the family room. I asked him what he was doing and he said he was looking for something. Couldn't ever figure out what he was looking for and he couldn't tell me so I directed him back to bed and tucked him in. I told him we would find it in the morning and he went back to sleep. These kind of things are happening more and more. On an upnote, Jim told me that he planned something for me on Saturday. When Chris and I got home from town friday evening, I asked Jim what it was and he told me he had booked an appointment for me at the Spa. An all day visit to the spa. I got a facial, full body massage, lunch, mani and pedi, hair trim. Jim said that I needed a break and some pampering because I had so much stress going on. Saturday morning I got up and Jim made me breakfast-ham and cheese omelet, orange juice and toast. How sweet can you get? He is absolutely the most thoughtful, kind, sweet husband. How blessed am I to have him? He is so sweet with Chris, my Mom, and he takes such good care of me. I thank God every day for him. He makes every day special but saturday was a day I won't soon forget. Tomorrow is doctors appt for Chris at the neurologist, and then foot doctor appt in the afternoon for Chris and Mom. It will be a full day in Jackson for us but will make the best of it and we will make it a fun day.
Tuesday, September 25, 2012
25 Sep 2012
Took Chris to the doctor yesterday to have his ears flushed out. People with Down Syndrome have a curved ear canal and they all have trouble with wax buildup. I had been cleaning his ears out with hydrogen peroxide but it wasn't doing it so the doctor flushed them out and Chris is so happy because he can hear again. His hearing had gotten so mad. The important thing too is that when he couldn't hear well, he was even more distant with us. The alzheimers puts him into his own world alot and then not being able to hear made it even worse. When we left the doctors office yesterday, he talked all the way to Lexington where we shopped. It was funny because he went on and on about how he could hear. He laughed and was a happy boy. We went to Moms yesterday and took her some chicken. My God she loves chicken lol. We are going back there today because I forget to bring her medicine I got for her and I forgot to have the doctor sign a paper so I can get the handicap card for the car. I am so forgeful! Chris picked out more halloween decorations for his room and he also picked out a scary clown mask. It looks like the clown "It" from the Stephen King novel. He spotted it and said can I get this? I said are you sure you want that? He said yes and I said you know I'm really scared of clowns and he said I know. Lmao!!! That's my Chris. When these moments surface of the old Chris that I grew up with and love so very much, it just makes my day. He's in there. Sometimes he doesn't come out but when he does I cherish it and am so happy and grateful. I say I love my brother so much but I can never truly express how deeply I love him. Words can not describe the love I have for him. He is perfect in my eyes and I am so very very lucky and blessed to call him my brother my buddy my friend.
Took Chris to the doctor yesterday to have his ears flushed out. People with Down Syndrome have a curved ear canal and they all have trouble with wax buildup. I had been cleaning his ears out with hydrogen peroxide but it wasn't doing it so the doctor flushed them out and Chris is so happy because he can hear again. His hearing had gotten so mad. The important thing too is that when he couldn't hear well, he was even more distant with us. The alzheimers puts him into his own world alot and then not being able to hear made it even worse. When we left the doctors office yesterday, he talked all the way to Lexington where we shopped. It was funny because he went on and on about how he could hear. He laughed and was a happy boy. We went to Moms yesterday and took her some chicken. My God she loves chicken lol. We are going back there today because I forget to bring her medicine I got for her and I forgot to have the doctor sign a paper so I can get the handicap card for the car. I am so forgeful! Chris picked out more halloween decorations for his room and he also picked out a scary clown mask. It looks like the clown "It" from the Stephen King novel. He spotted it and said can I get this? I said are you sure you want that? He said yes and I said you know I'm really scared of clowns and he said I know. Lmao!!! That's my Chris. When these moments surface of the old Chris that I grew up with and love so very much, it just makes my day. He's in there. Sometimes he doesn't come out but when he does I cherish it and am so happy and grateful. I say I love my brother so much but I can never truly express how deeply I love him. Words can not describe the love I have for him. He is perfect in my eyes and I am so very very lucky and blessed to call him my brother my buddy my friend.
Subscribe to:
Posts (Atom)