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.
Friday, October 26, 2012
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.
Thursday, September 20, 2012
20 Sep 2012
Some days it is so hard to be a caregiver. You question yourself; am I'm doing enough? Am I good enough? Should I have done that differently? Can I really do this? Ahhh, some days are just damn hard and that's all there is to it. Chris had another spell this morning where his eyes rolled back in his head and he almost fell. I think he is having some seizures. The doctor thinks he might be also. October 1st I guess we will find out. They will run more tests and see. Later, we went to WalMart because i had to get 2 medication refills for Chris, 2 for Jim, and 1 for Mom. Chris was so out of it and it was very difficult. He had to sit alot and was confused. I suppose the time is coming where I can't take Chris on errands with me anymore. This means that I will have to find someone that can sit with him. I'm so untrusting of people and this is going to be a hard one. They definitely have to at least be a CNA. I'd love to find a nurse or recently retired nurse that would be willing to sit with him. They have to be certified in first aid and know the heimlich manuveur. In the meantime, Jim can be with Chris and I will have to shop on the weekends. It will all work out. It has to doesn't it? Some days it is so hard to be a caregiver..............
Some days it is so hard to be a caregiver. You question yourself; am I'm doing enough? Am I good enough? Should I have done that differently? Can I really do this? Ahhh, some days are just damn hard and that's all there is to it. Chris had another spell this morning where his eyes rolled back in his head and he almost fell. I think he is having some seizures. The doctor thinks he might be also. October 1st I guess we will find out. They will run more tests and see. Later, we went to WalMart because i had to get 2 medication refills for Chris, 2 for Jim, and 1 for Mom. Chris was so out of it and it was very difficult. He had to sit alot and was confused. I suppose the time is coming where I can't take Chris on errands with me anymore. This means that I will have to find someone that can sit with him. I'm so untrusting of people and this is going to be a hard one. They definitely have to at least be a CNA. I'd love to find a nurse or recently retired nurse that would be willing to sit with him. They have to be certified in first aid and know the heimlich manuveur. In the meantime, Jim can be with Chris and I will have to shop on the weekends. It will all work out. It has to doesn't it? Some days it is so hard to be a caregiver..............
Tuesday, September 18, 2012
18 Sep 2012
The last few days have been fair. I am down in my back and that has made things much more difficult. I have to sit down while I dress Chris and even then it is hard. Chris is doing fair. I don't know if I mentioned this last post but the other morning when I woke him up he told me he had so much to do. I asked him what did he need to do and he said he needed to go to church. For those of you that don't know Chris that well, he is a very faithful person and loves church but hasn't been for awhile due to his health. It kind of got me because the way he said it was almost like he was, as they say, "getting his house in order". Some days I feel that he won't be around much longer. Other days it is better and I have hope for him having more quality time here on earth. After he ate breakfast (he eats breakfast in his room so he can sit and watch Andy Griffith), I looked in at him and he was sitting on the side of bed and jerking his legs around, his body was shaking and he had his eyes closed. I thought that perhaps he was having another seizure. I asked him what he was doing and he said he was trying to get out of a trap. I told him to just lift his legs up and he said he was trying but they wouldn't move. I could tell he was really trying and he couldn't lift them. Freaky because it was all mind over matter. He really thought he couldn't lift his legs because they were trapped. Anyway, got his legs moved and he is sitting in bed watching cartoons. Each day is more and more foggy. I want my brother back. I want my sweet giggliing funny boy that always has a smile on his face and a joke to tell. The season is changing and soon it will be dark dreary cold days and I don't think I can face those days. At least with the sunshine, there is a feeling of warmth and brightness and hope. I know I need to be strong but some days I feel so very weak. I have to work once again to find that joy. It's there. There is alot of joy in life. There still is alot of joy in Chris. He is now watching Scooby Doo and he loves it so. He puts on his scooby doo hat, and I got him a scooby doo bandana so he likes to wear that around his neck. Now that is funny and joyful in such a good way. I had Chris pick out some halloween stuff and we put up some lights around the house today. I need to put the skeleton up in his room that he picked out. I think I'll get some more lights and put them in his window. I haven't been sharing different things to make things easier to care for him or medications and food. You know, helpful hints. I mean to do that but I get caught up in the sadness. One thing I have figured out it and it is working well now-Chris was waking up every morning with his bed wet. I have a plastic cover on the matress and pads on top of that. The fitted sheet is next with pads on it to catch what leaks out. He wears 2 long pads and 2 pull up pads at night. Still, he is wet and so is the bed. Well, I found that if I tape the bed pads down so they don't move around, the bedding is saved and I don't have to wash his bedding every single day. All I have to do is remove those used bed pads and put new ones down. It has helped alot and has made it so much easier on me and my washer lol. Plus, Chris feels better about it too because he felt bad when he would wet the bed. I tell not to worry about it; no big deal but he still feels bad. My sweet little baby bro.
The last few days have been fair. I am down in my back and that has made things much more difficult. I have to sit down while I dress Chris and even then it is hard. Chris is doing fair. I don't know if I mentioned this last post but the other morning when I woke him up he told me he had so much to do. I asked him what did he need to do and he said he needed to go to church. For those of you that don't know Chris that well, he is a very faithful person and loves church but hasn't been for awhile due to his health. It kind of got me because the way he said it was almost like he was, as they say, "getting his house in order". Some days I feel that he won't be around much longer. Other days it is better and I have hope for him having more quality time here on earth. After he ate breakfast (he eats breakfast in his room so he can sit and watch Andy Griffith), I looked in at him and he was sitting on the side of bed and jerking his legs around, his body was shaking and he had his eyes closed. I thought that perhaps he was having another seizure. I asked him what he was doing and he said he was trying to get out of a trap. I told him to just lift his legs up and he said he was trying but they wouldn't move. I could tell he was really trying and he couldn't lift them. Freaky because it was all mind over matter. He really thought he couldn't lift his legs because they were trapped. Anyway, got his legs moved and he is sitting in bed watching cartoons. Each day is more and more foggy. I want my brother back. I want my sweet giggliing funny boy that always has a smile on his face and a joke to tell. The season is changing and soon it will be dark dreary cold days and I don't think I can face those days. At least with the sunshine, there is a feeling of warmth and brightness and hope. I know I need to be strong but some days I feel so very weak. I have to work once again to find that joy. It's there. There is alot of joy in life. There still is alot of joy in Chris. He is now watching Scooby Doo and he loves it so. He puts on his scooby doo hat, and I got him a scooby doo bandana so he likes to wear that around his neck. Now that is funny and joyful in such a good way. I had Chris pick out some halloween stuff and we put up some lights around the house today. I need to put the skeleton up in his room that he picked out. I think I'll get some more lights and put them in his window. I haven't been sharing different things to make things easier to care for him or medications and food. You know, helpful hints. I mean to do that but I get caught up in the sadness. One thing I have figured out it and it is working well now-Chris was waking up every morning with his bed wet. I have a plastic cover on the matress and pads on top of that. The fitted sheet is next with pads on it to catch what leaks out. He wears 2 long pads and 2 pull up pads at night. Still, he is wet and so is the bed. Well, I found that if I tape the bed pads down so they don't move around, the bedding is saved and I don't have to wash his bedding every single day. All I have to do is remove those used bed pads and put new ones down. It has helped alot and has made it so much easier on me and my washer lol. Plus, Chris feels better about it too because he felt bad when he would wet the bed. I tell not to worry about it; no big deal but he still feels bad. My sweet little baby bro.
Wednesday, September 12, 2012
12 Sep 2012
Today has been a terrible day. It started out bad with Chris in fog and so slow this morning and being confused. We had to get up early because Chris had a doctors appt. We got to the doctor and Chris was in a daze. He couldn't hear anything and was just basically lost. the doctor prescribed him some eye drops for his watery red swollen eyes and he checked Chris' circulation in his left leg that hurts him alot. I cried in front of our doctor and I tell you he is the kindest most compassionate man. He's from India and is so gentle and caring and so kind to Chris and Mom. Jim and I really like him too. He is really smart and thorough. A country doctor in a little town in Tennessee from India lol. Chris and I then went and got Mom and went to Lexington and got Chris' medicine and got neccessities and groceries. As usual, it was very trying with my Mom and totally wore me out. After dropping Mom off, Chris and I were heading home and all of a sudden he came out of his funk and was talking and laughing and was the Chris I've always known. My Chris was back. All evening he has been happy and laughing and cheerful. I just tucked him in and he is now sleeping. A very stressful day and I have cried off and on all day. Today it really hit me just how much Chris has changed. Everything; his laughter, his excitement over things-just everything. I talked about it at length with my husband tonight and we talked about how it will reach a time when I might not be able to care for Chris. If he needs medical care that I can't do or something. I know that there will possibly be a time when this happens but I told Jim that I can only take it day by day. As of now, I can handle everything. I will do it as long as I physically can. He will stay with us and when the time comes, I will get a nurse to come in and help. I told Mom it doesn't work for me to take her and Chris shopping. It's too hard. They both are on walkers and I can't keep up with both and Chris is getting to the point that physically he can't do it. I'm going to have to get someone to help Mom. She is not happy about it I'm sure but I told her I can't do it all. I can only do so much and Chris' needs are pressing at this time and Mom is doing pretty good considering so I might have to have someone do her grocery shopping or going to check on her. Who knows; I guess I will find out soon enough. Time for bed; I'm exhausted.
Today has been a terrible day. It started out bad with Chris in fog and so slow this morning and being confused. We had to get up early because Chris had a doctors appt. We got to the doctor and Chris was in a daze. He couldn't hear anything and was just basically lost. the doctor prescribed him some eye drops for his watery red swollen eyes and he checked Chris' circulation in his left leg that hurts him alot. I cried in front of our doctor and I tell you he is the kindest most compassionate man. He's from India and is so gentle and caring and so kind to Chris and Mom. Jim and I really like him too. He is really smart and thorough. A country doctor in a little town in Tennessee from India lol. Chris and I then went and got Mom and went to Lexington and got Chris' medicine and got neccessities and groceries. As usual, it was very trying with my Mom and totally wore me out. After dropping Mom off, Chris and I were heading home and all of a sudden he came out of his funk and was talking and laughing and was the Chris I've always known. My Chris was back. All evening he has been happy and laughing and cheerful. I just tucked him in and he is now sleeping. A very stressful day and I have cried off and on all day. Today it really hit me just how much Chris has changed. Everything; his laughter, his excitement over things-just everything. I talked about it at length with my husband tonight and we talked about how it will reach a time when I might not be able to care for Chris. If he needs medical care that I can't do or something. I know that there will possibly be a time when this happens but I told Jim that I can only take it day by day. As of now, I can handle everything. I will do it as long as I physically can. He will stay with us and when the time comes, I will get a nurse to come in and help. I told Mom it doesn't work for me to take her and Chris shopping. It's too hard. They both are on walkers and I can't keep up with both and Chris is getting to the point that physically he can't do it. I'm going to have to get someone to help Mom. She is not happy about it I'm sure but I told her I can't do it all. I can only do so much and Chris' needs are pressing at this time and Mom is doing pretty good considering so I might have to have someone do her grocery shopping or going to check on her. Who knows; I guess I will find out soon enough. Time for bed; I'm exhausted.
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