29 Apr 2013
Well, lets see what all has been going on. Mom is still in the nursing home. She is doing better and is able to walk now with a walker and assistance. She has had some health issues while at the nursing home. Itching, sore throat and other things. It's always something. I don't know how much longer she will be there. She has until the end of May 100% paid for by medicare and her insurance. After that, she will be responsible for 80% of the bill. Chris is doing alright I guess. He is wheelchair bound now. He can walk alittle but is very unsteady and I am so afraid he will fall. He goes to the cardiologist May 7th. I'm so anxious to see what the doctor says. Oddly enough, I had a problem last week that I thought was indigestion/heartburn. It lasted quite a while and I was sick at my stomach, had a cold sweat and a headache. It finally calmed down but I kept thinking about it because it wasn't like any heartburn I have ever had. When I went to the doctor for my allergy shot a few days later I told him about it and that I have had a fluttering in my chest sometimes. He had me take an EKG and it showed an abnormality in my heart. He wanted me to go to a cardiologist and said they would probably do a cardiac catheter with dye injected but insurance doesn't cover it so I said no. The doctor told me to do light activity and take it easy. TAKE IT EASY???????????? How in the hell does a person take it easy taking care of someone with alzheimers!?! I gave up red meat for lent and decided to not eat red meat anymore so that is good. I have cut out anything fried and am really watching what I eat. I need to be healthy for Chris to take care of him. Chris' birthday is May 19th and he is turning the big 5o! I want to have a party for him at Casey Jones in Jackson. Hopefully, people will be able to come. Lol the only people we really know here are Jims family. It doesn't matter if it ends up being just me, Jim and Chris....we will make it special. Ofcourse we will go see Mom so he can spend some time with her too. Seems like more stuff has gone on too but I am in a fog. Can't remember and I kind of am in a numb mood right now. Chris asked me today how many kids I had. The questions he asks now are so random. I just answer them and move on. We try to go see Mom twice a week if lucky. She wants us to visit more and wants me to be more involved with everything but I can't. I make sure she gets what she needs and etc... but she has got to tell them when she needs something. She has had someone do everything for her her whole life and I can't do it. I am overloaded as it is. I have gotten really numb regarding her and I feel kinda bad about it but it is what it is. She has finally worn me down. I do what I can and if I can't I tell her I can't. If she's mad, then she's mad. She will have to get over it. Chris and I went to see my mother in law for a couple days. It was great and we had such a good time. I didn't tell Mom we were going because I knew it would become a big deal and she would try to sabotage the trip. Sad but true. have to get Chris ready for bed. My precious boy! In this crazy mixed up world there is one thing that is constant and that is Chris' sweetness. He is always loving and sweet. Love that boy!
Monday, April 29, 2013
Sunday, March 17, 2013
17 Mar 2013
What a week this has been. I am so glad it is over. First, found out a dear family friend died suddenly. He was 55 and passed in his sleep. He has a brother with Down Syndrome that is good friends with Chris. They went to school together and Dan (who passed away) and I went to school together. He always checked in with me every few days to see how Chris was doing. So sad. Wednesday Chris and I went to the doctor for my weekly allergy shot and Chris had a routine check up. He was really out of it that morning and at the end of his checkup he said he hurt. Doctor said maybe he should rest when he got home. He noticed that Chris' fingertips were very blue so he checked Chris' oxygen level and it was low. I had to sit there for 20 minutes after my allergy shot so as we're sitting there Chris starts to cry and says he hurts. His eyes got that wild horse look with the white showing all around his iris and he made weird sounds. I yelled for the doctor and he came back in, checked his pulse and took his blood pressure real quick. It was 43/13. He told his nurse to call an ambulance immediately. Chris almost flatlined. His pulse was 30 something. I thought I was losing my precious brother. He was in the hospital this week but is home now. They ran all kinds of tests and his heart just isn't pumping enough. I thought it was the alzheimers or his medication but it is the down syndrome. What a cruel twist is that? He is on some medication and is resting at home. He is suppose to rest and is going back to the doctor on thursday. My precious precious boy. I stayed with Chris nonstop. I slept on the other bed in his hospital room. Normally they put a pacemaker in for this problem but I don't think he would handle that well. He's happy at home and feeling pretty good. I am watching him like a hawk. Chris' dog, Barney, has been very sick and on medications and friday he got so bad I took him to the vet while Jim stayed with Chris and sadly had to put Barney down. I cried and cried. This week has been so sad and such great losses for us all. I didn't tell Chris about our friend Dan and I didn't tell Chris about Barney. I took Barney into Chris' room so he could see him and he said "Who's dog is that?" I told him it was his dog and he said "Can I call it Lassie?" He didn't remember the dog or the fact that he named it Barney after Barney Fife. Such sadness! It's just more than a person can handle. Cherish each and every day. I love every minute that I have with Chris. Jim and I love Chris and make his days happy and carefree and no worries about anything. Chris makes our days bright and happy and full of joy.
What a week this has been. I am so glad it is over. First, found out a dear family friend died suddenly. He was 55 and passed in his sleep. He has a brother with Down Syndrome that is good friends with Chris. They went to school together and Dan (who passed away) and I went to school together. He always checked in with me every few days to see how Chris was doing. So sad. Wednesday Chris and I went to the doctor for my weekly allergy shot and Chris had a routine check up. He was really out of it that morning and at the end of his checkup he said he hurt. Doctor said maybe he should rest when he got home. He noticed that Chris' fingertips were very blue so he checked Chris' oxygen level and it was low. I had to sit there for 20 minutes after my allergy shot so as we're sitting there Chris starts to cry and says he hurts. His eyes got that wild horse look with the white showing all around his iris and he made weird sounds. I yelled for the doctor and he came back in, checked his pulse and took his blood pressure real quick. It was 43/13. He told his nurse to call an ambulance immediately. Chris almost flatlined. His pulse was 30 something. I thought I was losing my precious brother. He was in the hospital this week but is home now. They ran all kinds of tests and his heart just isn't pumping enough. I thought it was the alzheimers or his medication but it is the down syndrome. What a cruel twist is that? He is on some medication and is resting at home. He is suppose to rest and is going back to the doctor on thursday. My precious precious boy. I stayed with Chris nonstop. I slept on the other bed in his hospital room. Normally they put a pacemaker in for this problem but I don't think he would handle that well. He's happy at home and feeling pretty good. I am watching him like a hawk. Chris' dog, Barney, has been very sick and on medications and friday he got so bad I took him to the vet while Jim stayed with Chris and sadly had to put Barney down. I cried and cried. This week has been so sad and such great losses for us all. I didn't tell Chris about our friend Dan and I didn't tell Chris about Barney. I took Barney into Chris' room so he could see him and he said "Who's dog is that?" I told him it was his dog and he said "Can I call it Lassie?" He didn't remember the dog or the fact that he named it Barney after Barney Fife. Such sadness! It's just more than a person can handle. Cherish each and every day. I love every minute that I have with Chris. Jim and I love Chris and make his days happy and carefree and no worries about anything. Chris makes our days bright and happy and full of joy.
Thursday, March 7, 2013
7 Mar 2013
Went to get weekly allergy shot today. Chris started out this morning very out of it but later in the day he perked up some. Yesterday we went to Jackson to my appointment with the allergist. Chris could barely walk around with his walker. I know that soon it will be wheelchair time. We went to O'Charleys for lunch and Chris could hardly lift the spoon and fork. He almost lies his face in the plate. He kept putting his arm in his plate and I had to really help him eat lunch. He does alot of mean or confused looks towards me. I think he's confused and he's looking at Jim or I trying to figure out either what's going on or what Jim and I are doing. Jim made a rail for Chris' bed so he doesn't fall out of bed again and every night he asks me why I'm locking him up. He doesn't understand at all. I think it confuses him when I take him to the nursing home to see Mom. He doesn't seem to understand what's going on. I can't not take him though so we will just have to work through it. Mom has actually been pretty nice and loving to me. It's a big change and I will take it. I don't count on it being this way forever but for now I'll take it and enjoy. At least I'm in alittle better frame of mind now. After all this time, I got an email from my older brother asking for an update regarding Mom and everyone. Hmmmm.
Went to get weekly allergy shot today. Chris started out this morning very out of it but later in the day he perked up some. Yesterday we went to Jackson to my appointment with the allergist. Chris could barely walk around with his walker. I know that soon it will be wheelchair time. We went to O'Charleys for lunch and Chris could hardly lift the spoon and fork. He almost lies his face in the plate. He kept putting his arm in his plate and I had to really help him eat lunch. He does alot of mean or confused looks towards me. I think he's confused and he's looking at Jim or I trying to figure out either what's going on or what Jim and I are doing. Jim made a rail for Chris' bed so he doesn't fall out of bed again and every night he asks me why I'm locking him up. He doesn't understand at all. I think it confuses him when I take him to the nursing home to see Mom. He doesn't seem to understand what's going on. I can't not take him though so we will just have to work through it. Mom has actually been pretty nice and loving to me. It's a big change and I will take it. I don't count on it being this way forever but for now I'll take it and enjoy. At least I'm in alittle better frame of mind now. After all this time, I got an email from my older brother asking for an update regarding Mom and everyone. Hmmmm.
Tuesday, February 26, 2013
26 Feb 2013
So I got the results back from Chris' xrays and he has arthritis in his back. Right now, the doctor recommended Chris take aleve for the back pain because ibuprofen helps with inflammation and Chris has pain pills if it hurts real bad. Nothing can be done for it. Chris seems to be comfortable for now and that's good. We are going for my weekly allergy shot tomorrow and then will go see Mom. She has been nice to me ever since she told me the other night that she apreciated me. Now, I'm not expecting her to always be this way. (Too much history between us) but after she also said that she neglected me and my older brother, which was very true, and I told her that she did the best she could do; I made the decision to forgive and move forward with Mom. Not go backwards into the past. It was as close as I will ever get to an apology from her and I'm okay with that. How I react from here on is all up to me. I have made the decision to move forward.....EVEN if she goes back, I won't! She did do the best that she could do. Was it good? No. Was it enough? No. Was she capable of giving more? Probably not. She just wasn't meant to be a mother. Some people aren't. Anyway, I am really working on me to be the best that I can be. Jim and I are doing great. Chris is happy and his appetite has been very good! He forgets and I deal with it and we move on. He has been able to feed himself the last couple of days. Chris is so sweet. I know I say that alot but it's true. His soul is so pure and he's gentle and kind and loving. He might have alzheimers and is having health issues but his light shines brighter than anyone else I've ever known and I have been blessed to know alot of truly good people. Lots of appointments coming up with lawyers and doctors and the nursing home. Praying everything goes well with all.
So I got the results back from Chris' xrays and he has arthritis in his back. Right now, the doctor recommended Chris take aleve for the back pain because ibuprofen helps with inflammation and Chris has pain pills if it hurts real bad. Nothing can be done for it. Chris seems to be comfortable for now and that's good. We are going for my weekly allergy shot tomorrow and then will go see Mom. She has been nice to me ever since she told me the other night that she apreciated me. Now, I'm not expecting her to always be this way. (Too much history between us) but after she also said that she neglected me and my older brother, which was very true, and I told her that she did the best she could do; I made the decision to forgive and move forward with Mom. Not go backwards into the past. It was as close as I will ever get to an apology from her and I'm okay with that. How I react from here on is all up to me. I have made the decision to move forward.....EVEN if she goes back, I won't! She did do the best that she could do. Was it good? No. Was it enough? No. Was she capable of giving more? Probably not. She just wasn't meant to be a mother. Some people aren't. Anyway, I am really working on me to be the best that I can be. Jim and I are doing great. Chris is happy and his appetite has been very good! He forgets and I deal with it and we move on. He has been able to feed himself the last couple of days. Chris is so sweet. I know I say that alot but it's true. His soul is so pure and he's gentle and kind and loving. He might have alzheimers and is having health issues but his light shines brighter than anyone else I've ever known and I have been blessed to know alot of truly good people. Lots of appointments coming up with lawyers and doctors and the nursing home. Praying everything goes well with all.
Monday, February 25, 2013
25 Feb 2013
So I was reading back in this blog and I started out with it all about Chris and his alzheimers and his care and medications and info I had found and now it's about me me me and what I'm dealing with. I didn't really intend this blog to be about that but I have to look at it as a natural transition since being a caregiver for someone involves everyone and does have to do with Chris and this damn disease. It's hard and I am doing what I can and Chris is doing what he can. Most days are still good. He has his foggy days and days when he physically hurts. He is losing more and more skills. The other day I had to spoon feed him his entire meal. He didn't have the strength to lift a spoon or fork. However, there are days he does just fine. The curse of this disease. One day he doesn't know who anyone is, the next day he knows everyone and is joking and being his old self. Some days he can feed himself and walk fairly well, the next day he can't. Every morning is an adventure (not in a good way). There is one thing that is always consistent; Chris is ALWAYS sweet and loving and caring. He worries about me all the time. He always says "I love you". He gives me kisses and hugs. I am dealing with Chris and Mom's health problems and have not been watching myself enough. I have let myself go to take care of them and I know that's not good because if I don't take care of myself, who will take care of them if I can't? I have not paid enough attention to my husband as well and our marriage. I am so wrapped up in this mother f$^#?ing disease and trying to deal with it and everything connected to it that I'm not living right and taking care of other things just as important. I had an argument with my husband and we never argue. We talked ALOT and he feels that his feelings don't matter to me. He feels that he isn't as important to me as everything else. He feels that I don't have time for him. He's right. I have been neglecting him and our relationship dealing with everything else that is going on with Mom and Chris. It's not right and not fair to him. He is so good and so loving and has been so quiet about everything. My husband is a very good man and I am so blessed to have him. He loves Chris so much and does so much for him. He treats my Mom so good and he is so good and loving to me. I feel that I have become a different person. I'm angry and frustrated and hurting and sad and weepy and tired and overwhelmed and did I mention angry; so damn angry. I didn't realise until my husband and I were really talking things out. I'm so angry at this disease. I'm angry that I have so much dumped on me and so much responsibility. I'm angry that I don't have the same carefree life that I did have with my husband. I'm angry that I don't have that freedom any longer for me and my husband to do what we want or just go take a trip whenever we want. I'm extremely angry that my older brother doesn't do anything to help. That's why I moved Mom here. He lived 10 minutes away from her and would call me and tell me that I needed to come up there and take care of her and Chris because he didn't have time. (I lived 8 hrs away). I'm angry that he doesn't care at all, doesn't give a shit about his own brother and mother. He didn't call or even send a birthday card to Chris in May. He hasn't come down here once since Mom moved here (which will be 2 yrs in May) to see her or Chris. He knows their medical problems and he knows that Chris might not be around much longer or Mom either and he's missing his chances to see them one more time. He says he can't afford to come. But he has money to buy a new kayak and do plenty of other things. Besides, all he would have to pay for is gas. He can stay at Moms house or stay with us in our guest house. I'm angry that he hasn't called or answered my emails to see how Mom is since she moved to the nursing home. He has her phone number at the nursing home and he has her cell phone number as well. This disease has isolated me. I feel so alone. I am a 24/7 caregiver and bill payer for Jim and I, Chris and Mom, an appointment maker, a housecleaner for 2 houses, a laundry lady for 4 people, etc.... I never have a day off and I'm not doing a very good job on housecleaning, keeping up with laundry (Chris goes through 3 sets of clothes a day). I feel like I'm really whining here and I feel guilty about that. I feel guilty about not being better at everything. I feel guilty that I can't go see Mom everyday. I feel guilty when I get frustrated with Chris. I feel guilty that I'm not more attentive to my husband. So much anger, so much sadness, so much guilt. I want to be the best for everyone and I'm not. Not by a long shot. I am worried about Mom because she still can not walk. I don't know if she will ever be able to walk again. She has therapy everyday at the nursing home so I pray that it helps. I have to state that there are happy sweet moments. Chris is always precious Chris. My Mom told me the other day that she appreciated me and what I'm doing (and that's a first!) and after talking to my husband about everything we are fine and are even stronger now as a couple. We both understand better now how each is feeling and we love each other very much. I'm just trying to make myself better so I can be better for the one's I love.
So I was reading back in this blog and I started out with it all about Chris and his alzheimers and his care and medications and info I had found and now it's about me me me and what I'm dealing with. I didn't really intend this blog to be about that but I have to look at it as a natural transition since being a caregiver for someone involves everyone and does have to do with Chris and this damn disease. It's hard and I am doing what I can and Chris is doing what he can. Most days are still good. He has his foggy days and days when he physically hurts. He is losing more and more skills. The other day I had to spoon feed him his entire meal. He didn't have the strength to lift a spoon or fork. However, there are days he does just fine. The curse of this disease. One day he doesn't know who anyone is, the next day he knows everyone and is joking and being his old self. Some days he can feed himself and walk fairly well, the next day he can't. Every morning is an adventure (not in a good way). There is one thing that is always consistent; Chris is ALWAYS sweet and loving and caring. He worries about me all the time. He always says "I love you". He gives me kisses and hugs. I am dealing with Chris and Mom's health problems and have not been watching myself enough. I have let myself go to take care of them and I know that's not good because if I don't take care of myself, who will take care of them if I can't? I have not paid enough attention to my husband as well and our marriage. I am so wrapped up in this mother f$^#?ing disease and trying to deal with it and everything connected to it that I'm not living right and taking care of other things just as important. I had an argument with my husband and we never argue. We talked ALOT and he feels that his feelings don't matter to me. He feels that he isn't as important to me as everything else. He feels that I don't have time for him. He's right. I have been neglecting him and our relationship dealing with everything else that is going on with Mom and Chris. It's not right and not fair to him. He is so good and so loving and has been so quiet about everything. My husband is a very good man and I am so blessed to have him. He loves Chris so much and does so much for him. He treats my Mom so good and he is so good and loving to me. I feel that I have become a different person. I'm angry and frustrated and hurting and sad and weepy and tired and overwhelmed and did I mention angry; so damn angry. I didn't realise until my husband and I were really talking things out. I'm so angry at this disease. I'm angry that I have so much dumped on me and so much responsibility. I'm angry that I don't have the same carefree life that I did have with my husband. I'm angry that I don't have that freedom any longer for me and my husband to do what we want or just go take a trip whenever we want. I'm extremely angry that my older brother doesn't do anything to help. That's why I moved Mom here. He lived 10 minutes away from her and would call me and tell me that I needed to come up there and take care of her and Chris because he didn't have time. (I lived 8 hrs away). I'm angry that he doesn't care at all, doesn't give a shit about his own brother and mother. He didn't call or even send a birthday card to Chris in May. He hasn't come down here once since Mom moved here (which will be 2 yrs in May) to see her or Chris. He knows their medical problems and he knows that Chris might not be around much longer or Mom either and he's missing his chances to see them one more time. He says he can't afford to come. But he has money to buy a new kayak and do plenty of other things. Besides, all he would have to pay for is gas. He can stay at Moms house or stay with us in our guest house. I'm angry that he hasn't called or answered my emails to see how Mom is since she moved to the nursing home. He has her phone number at the nursing home and he has her cell phone number as well. This disease has isolated me. I feel so alone. I am a 24/7 caregiver and bill payer for Jim and I, Chris and Mom, an appointment maker, a housecleaner for 2 houses, a laundry lady for 4 people, etc.... I never have a day off and I'm not doing a very good job on housecleaning, keeping up with laundry (Chris goes through 3 sets of clothes a day). I feel like I'm really whining here and I feel guilty about that. I feel guilty about not being better at everything. I feel guilty that I can't go see Mom everyday. I feel guilty when I get frustrated with Chris. I feel guilty that I'm not more attentive to my husband. So much anger, so much sadness, so much guilt. I want to be the best for everyone and I'm not. Not by a long shot. I am worried about Mom because she still can not walk. I don't know if she will ever be able to walk again. She has therapy everyday at the nursing home so I pray that it helps. I have to state that there are happy sweet moments. Chris is always precious Chris. My Mom told me the other day that she appreciated me and what I'm doing (and that's a first!) and after talking to my husband about everything we are fine and are even stronger now as a couple. We both understand better now how each is feeling and we love each other very much. I'm just trying to make myself better so I can be better for the one's I love.
Monday, February 18, 2013
18 Feb 2013
So much has gone on. Last wed, the 13th, Chris and I were going to Moms and taking lunch and eat with her, getting the guardianship paper from her and then going to the appt. with the lawyer regarding getting guardianship of Chris. I called Mom before we left the house to see what she was wanting for lunch; no answer on her cell phone. Tried it several times so I then called her house phone; no answer. After numerous calls (by then we were on the road, on our way to her house) I called Jim and said something is up. I got to Moms house, let myself in and there was Mom lying in the hallway. She said she thought she broke her hip. She fell in the kitchen and crawled to the hallway. We got there about 1:30pm. She had fallen about 10am. Called 911, ambulance took her to Jackson and they did surgery that night. She did well through surgery and is now at a nursing home in Parsons. They think that she will be up walking and be able to go home in maybe 4 to 6 weeks. I don't think so. She is lying in bed and can't stand on her leg, much less walk. Besides this going on, Chris is having more and more difficulty walking and we went to Walmart saturday and when we got back out to the car, We followed our routine like we always do. He leaves his walker by the car, walks around and gets in the car. He left his walker, started to walk around the car and either tripped or lost his footing and fell. His face hit the brush bar on the front of the Jeep and then he fell on his back. I dropped everything and ran to him and fell kindof on him. His nose was bleeding so bad. He was crying. I got him to sit up and out of nowhere a man comes up and says "Can I help you get him up?" I said yes and I was thinking, my back is not going to be able to do this and out of nowhere another man comes up and says "Wait. Let me help get him up." Thank God for the angels. They got him up while I held kleenex to his nose and they got him around to the door and got him in the jeep. I had left my purse and our cart of stuff just sitting out in the lane and thank you God once again, no one messed with it or took off with my purse because I sure wouldn't have noticed. I took Chris to the ER to be checked over and they took xrays of his nose. It was not broken. They looked him all over; scratched up knee but other than that he was ok. His back is hurting some now so I'll call the doctor tomorrow. I think maybe he should have xrays of his back. He has fallen on his back 3 times now and it does seem to be bothering him. It is so hard for him to describe pain or tell someone where he is hurting. If you ask Chris he always says he hurts all over. It has been a very bad few days and before Mom fell she had gotten mad at me and had called me a spoilt brat, not a nice person and a bitch. I am just so worn out and emotionally exhausted. It's getting harder and harder to deal with everything. Add to that complete burn out and I know that I need to get someone to help with things and help with Mom and Chris too at times. Today, Chris was in a terrible fog. He ket falling asleep off and on today and while we were at the restaurant eating he started crying and said he was hurting. I told Mom about Chris falling and his nose bleeding and all she could say was she knew what that was like to fall. She didn't ask how he was or seemed concerned at all. I don't really know why I expected her to be. My sweet precious Chris is slipping away and I feel like I can't give him the attention he deserves and needs. I'm just going to have to have someone deal with Mom so I can devote my time to Chris. Not to mention that I also need to devote time to my marriage. Someone that has not been a caregiver could not understand how it effects every corner of your life. How everything in your life changes. I'm not complaining about taking care of Chris. I knew I would always be taking care of him and I love him dearly and would do anything for him. But taking care of Chris AND Mom is too much. I can't do it.
So much has gone on. Last wed, the 13th, Chris and I were going to Moms and taking lunch and eat with her, getting the guardianship paper from her and then going to the appt. with the lawyer regarding getting guardianship of Chris. I called Mom before we left the house to see what she was wanting for lunch; no answer on her cell phone. Tried it several times so I then called her house phone; no answer. After numerous calls (by then we were on the road, on our way to her house) I called Jim and said something is up. I got to Moms house, let myself in and there was Mom lying in the hallway. She said she thought she broke her hip. She fell in the kitchen and crawled to the hallway. We got there about 1:30pm. She had fallen about 10am. Called 911, ambulance took her to Jackson and they did surgery that night. She did well through surgery and is now at a nursing home in Parsons. They think that she will be up walking and be able to go home in maybe 4 to 6 weeks. I don't think so. She is lying in bed and can't stand on her leg, much less walk. Besides this going on, Chris is having more and more difficulty walking and we went to Walmart saturday and when we got back out to the car, We followed our routine like we always do. He leaves his walker by the car, walks around and gets in the car. He left his walker, started to walk around the car and either tripped or lost his footing and fell. His face hit the brush bar on the front of the Jeep and then he fell on his back. I dropped everything and ran to him and fell kindof on him. His nose was bleeding so bad. He was crying. I got him to sit up and out of nowhere a man comes up and says "Can I help you get him up?" I said yes and I was thinking, my back is not going to be able to do this and out of nowhere another man comes up and says "Wait. Let me help get him up." Thank God for the angels. They got him up while I held kleenex to his nose and they got him around to the door and got him in the jeep. I had left my purse and our cart of stuff just sitting out in the lane and thank you God once again, no one messed with it or took off with my purse because I sure wouldn't have noticed. I took Chris to the ER to be checked over and they took xrays of his nose. It was not broken. They looked him all over; scratched up knee but other than that he was ok. His back is hurting some now so I'll call the doctor tomorrow. I think maybe he should have xrays of his back. He has fallen on his back 3 times now and it does seem to be bothering him. It is so hard for him to describe pain or tell someone where he is hurting. If you ask Chris he always says he hurts all over. It has been a very bad few days and before Mom fell she had gotten mad at me and had called me a spoilt brat, not a nice person and a bitch. I am just so worn out and emotionally exhausted. It's getting harder and harder to deal with everything. Add to that complete burn out and I know that I need to get someone to help with things and help with Mom and Chris too at times. Today, Chris was in a terrible fog. He ket falling asleep off and on today and while we were at the restaurant eating he started crying and said he was hurting. I told Mom about Chris falling and his nose bleeding and all she could say was she knew what that was like to fall. She didn't ask how he was or seemed concerned at all. I don't really know why I expected her to be. My sweet precious Chris is slipping away and I feel like I can't give him the attention he deserves and needs. I'm just going to have to have someone deal with Mom so I can devote my time to Chris. Not to mention that I also need to devote time to my marriage. Someone that has not been a caregiver could not understand how it effects every corner of your life. How everything in your life changes. I'm not complaining about taking care of Chris. I knew I would always be taking care of him and I love him dearly and would do anything for him. But taking care of Chris AND Mom is too much. I can't do it.
Sunday, January 27, 2013
27 Jan 2013
It's getting to where I can't seem to find time to write in my blog. The days get shorter and more filled with something going on. There just aren't enough hours in the day. At times I feel like I'm fighting a losing battle. Chris is about the same; some days really good some days not. A few days ago I got up to check on him as usual (about 6am). I could hear him making a strange noise like a cry and I thought he was having a bad dream. I didn't see him in his bed and I thought he must be sitting up in bed since he does that alot. I walked further down the hall to see what he was doing and I see that he is lying on the floor. He had fallen out of bed. I have no idea how long he had laid there but he was wet and his pjs felt ice cold. He had hit the back of his neck and he had a bruise on his upper arm. I had to go wake Jim up to help me get Chris up out of the floor. I had Chris lie back down for alittle. I them got his breakfast ready and got Chris up out of bed and while I'm changing him and dressing him he falls again and hits his head and fell right on his back. He has bruises across his back. I took him to the doctor and he checked him over and looked really close for any head injury or problem. Chris has actually been fine since then. I don't know why he fell out of bed but he does move around alot now in bed. Lots of tossing and turning. I suppose he just rolled out. I feel terrible that he fell again right in front of me. My poor baby. It is just another change to deal with. If Chris isn't able to stand while I change him and out his pads on him I'm going to have to get different pads and change him like a baby. It is a very difficult situation. To top things off, I have that lovely stomach virus. I got so sick friday evening and I have never thrown up so hard in my life. It's sunday evening now and I am feeling better now but am so weak. I've been able to change Chris, clean him up and Jim has been fixing him his meals. Sweet Chris saw me throwing up and is so worried about me. He has the most tender heart of anyone I've ever known. He keeps wanting to hug me and kiss me. I told him that he can't because I don't want him to get sick. He understands but doesn't understand. He says he wants to hug me so I'll feel better. I told him when I got better he could hug and kiss me all he wanted because I sure love his kisses and hugs. I am praying that Chris and Jim do not get it. Chris might end up in the hospital if he got it.
It's getting to where I can't seem to find time to write in my blog. The days get shorter and more filled with something going on. There just aren't enough hours in the day. At times I feel like I'm fighting a losing battle. Chris is about the same; some days really good some days not. A few days ago I got up to check on him as usual (about 6am). I could hear him making a strange noise like a cry and I thought he was having a bad dream. I didn't see him in his bed and I thought he must be sitting up in bed since he does that alot. I walked further down the hall to see what he was doing and I see that he is lying on the floor. He had fallen out of bed. I have no idea how long he had laid there but he was wet and his pjs felt ice cold. He had hit the back of his neck and he had a bruise on his upper arm. I had to go wake Jim up to help me get Chris up out of the floor. I had Chris lie back down for alittle. I them got his breakfast ready and got Chris up out of bed and while I'm changing him and dressing him he falls again and hits his head and fell right on his back. He has bruises across his back. I took him to the doctor and he checked him over and looked really close for any head injury or problem. Chris has actually been fine since then. I don't know why he fell out of bed but he does move around alot now in bed. Lots of tossing and turning. I suppose he just rolled out. I feel terrible that he fell again right in front of me. My poor baby. It is just another change to deal with. If Chris isn't able to stand while I change him and out his pads on him I'm going to have to get different pads and change him like a baby. It is a very difficult situation. To top things off, I have that lovely stomach virus. I got so sick friday evening and I have never thrown up so hard in my life. It's sunday evening now and I am feeling better now but am so weak. I've been able to change Chris, clean him up and Jim has been fixing him his meals. Sweet Chris saw me throwing up and is so worried about me. He has the most tender heart of anyone I've ever known. He keeps wanting to hug me and kiss me. I told him that he can't because I don't want him to get sick. He understands but doesn't understand. He says he wants to hug me so I'll feel better. I told him when I got better he could hug and kiss me all he wanted because I sure love his kisses and hugs. I am praying that Chris and Jim do not get it. Chris might end up in the hospital if he got it.
Sunday, January 13, 2013
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.
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.
Thursday, December 13, 2012
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.
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.
Friday, December 7, 2012
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.
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.
Monday, November 26, 2012
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.
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.
Friday, November 23, 2012
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.
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.
Wednesday, November 21, 2012
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.
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.
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.
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..............
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