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.

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.

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.

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.

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.

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.

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.