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Stroke Caregiver - female
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Everything posted by 4mom

  1. Happy Anniversary 4mom!

  2. Happy Anniversary 4mom!

  3. 4mom

    Ok I know this is going to sound crazy being as I have taken care of my mom for over 3 years now, but we started having some problems. Maybe someone out there has also experienced this and has some suggestions. My mom is quadraplegic and unable to adjust herself in bed. I turn her every 2 hours or sooner if she needs it. I did it religously for 2+ years even at night until we got the new bed for her. We bought a alternating pressure matress. I am told I don't need to turn her at night and this is one of the purposes of the bed, but she still wants moved once or twice on a good night, bad nights even more. The lack of sleep heas really worn me out and I don't ever feel like I get caught up. I stay tired all of the time. It just makes me feel lazy. Sorry to get off on that but the real problem is that her bottom is so sore. She really doesn't have a open wound, but it is more like it is peeling. She is in tears at times over it and her Dr. just put her back on hydrocodone to ease the pain. Her tailbone bothers her so bad. With the peeling it is on both sides of her bottom and it almost looks bruised. I know one of the problems is the way I move her. I am by myself 75% of the time so to move her or boost her up in bed I push her by her feet up in bed and then to turn her I pull her by the chuck from side to side whatever way she needs to face. I think it is friction that is causing the peeling. She never lays on her bottom except to be bathed. She does get up in her chair but not when her tailbone is really bothering her cause it puts all the pressure on the tailbone. She has a tilt in space chair but it still bothers her when she is in this much pain. If anyone has any advice on a way to make her more comfortable or a better way for me to move her by myself I would love to try anything. I know you learn from trial and error but I can't think of any way to change it. When my husband is home from work he helps. I won't wake him at night cause he has to work all day. Hopefully someone has experienced this and found something that worked. Thanks Ruth
  4. 4mom

    upadate time! Ok mom went to the wound healing clinic and I must say I realy wasn't to impressed. I wasn't real impressed because all they did was clean it and take pictures and they wanted het to come back every week. I don't see the point personally. They seemed to scrub to hard and take all the new healing skin off and then she was in so much pain for the next several days. They did however make a couple really good suggestions. There is a cream that is sold over the counter at most drugstores but you have to ask the pharmasist for it. It is called calmoseptine cream. It has really helped. They did end up saying that yes it is caused by the way I move her. They called it a pressure ulcer with sheering. The other thing that the nurse suggested is this thing called a slip pad. They say you are able to move a 400lb. person with one person. Boosting or repositioning. It says it takes the friction away. I had a hard time finding the one they recomended but did find one called mooveez. They call thiers a slider sheet. I think it is the same principal just a different name. I ordered it last week. I will let everyone know how it works when we get it. This sounds like a god send product. I can't wait to try it. I will let everyone know. Ruth
  5. My mom's stroke was a little over 3 years ago. She was left needing 24 hour care. Throughout this "journey" I have struggled with managing all that my life demands of me. Being a caregiver takes so much. I really truly think that no-one could understand how hard it is if you haven't done it. Then there are different degrees of care that individuals require. My mom in particular is unable to do anything for herself. She has grown very dependent on me. I am her safety blanket. There is so much guilt involved and she learned fast how to play me. For a long time (and being honest sometimes) it still works. Which I guess is my fault for letting it happen. ya know I love her so much and I fell so bad for her. She lost so much. I want to give her whatever I can to make her happy. There are the days though that I get mad and lately it has been happening more often. She says things that make me so mad. Like you would be happy to get rid of me, or I am a bother to you. I am so sick of telling her how much I love her and I am happy to take care of her. I tell her she just needs to give me a break. Last sunday I helped out my chiropractor with a health fair and before I left I got I don't want you to go, I will miss you. All over me leaving for a few hours. I used to let that get to me and I would feel guilty but now it makes me mad. She gets hurt when we do things that she can't and then that makes me feel guilty cause she can't. I wish she could. I would give anything to make it happen. I ask her don't you want me to live, to have a life? I tell her in many ways my life stopped when hers did. I have sacraficed alot and sometimes I don't think she can see past her own pain and see mine. Is that selfish of me to say? I have so many mixed feelings on this. I have taken a stand. One day when we were not getting along so well I kinda snapped on her. I feel I have given her so much and put my self and husband last. It was a day that she was depressed and kept saying stuff about me not wanting her and I had just had enough. I made the decision to move back to my room. We have slept on the pullout couch for over 3 years. She was/is afraid to sleep by herself. I bought a monitor and that night we went to our room. She cried on and off for about (honest to God) 3 hours. I finally snapped and yelled at her like mom just stop, I can't take it anymore. It was like your kid throwing a 3 hour fit. ENOUGH ENOUGH!!! It took all I had to stick to my guns and I didn't even tell my husband until he went to pull out the bed incase I chickened out. I followed through with it and she was fine and it felt so good to sleep in my own bed. I love it. She still doesn't like it but has adjusted to it. I knew it was just going to take me doing it for it to work. I have approached her on it many times over the years and she never agreed to it. So it has been about 3 weeks and I even stopped getting up at night and turning her. She has the pressure relief mattress and she wakes me if she needs me. She tries to tell on me to my brothers or my dad really anyone that will listen and they all just say it's about time. You want to know the sad thing is when I take care of me I feel selfish. I started seeing a chiropractor and he said someone needs to take care of you. He is trying accupuncture on me to try and help with my fatigue and stress. It felt so good to hear someone wanted to take care of me. I think I am desperate. I almost cried when he said it. It was like hey someone gets how exhaugsted I am. I told him I just want to feel alive again. Feel motivated again. I think I have run myself down so much that I can't get it back on my own. Shouldn't I be used to this after so long? Does this ever get any easier? I want to be her caretaker and able to have a life too. I want to be a good mom and wife. It is hard to make everyone happy. I know this is going to make me sound completely crazy, but I want to have a baby. I don't want my son to be a only child. I have 3 brothers and 1 sister and even though they drive me crazy I couldn't imagine my life w/o them. My mom is totally against me having a baby. She already had 12 grandkids. She is also worried about me being able to care for her with being pregnant and then after the baby I think she is worried I wouldn't have time. When my mom had her stroke my son was only a year and a half and there was no way I could handle another child plus we ended up taking in my twin 5 year old neices for 2 years. They are home now (thank God)! I just feel it is now or never. I turned 30 in Oct. and time is ticking. My son is already 5. I feel like I have given alot already and I don't want time to run out and regrett not having another child. I worry if I can physically handle it all. So am I crazy or what? Let me know if you have any thoughts on this Ruth
  6. My dad and mom divorced about 12 years ago. They were married for 31 years before they divorced. He does as much as he can and I am so thankful for what he does do. He visits her almost every day and takes us to appointments if I need him to. He will even sit with her for short periods of time when I need him to. He has helped financially and he is very supportive. I don't think most ex husbands would do what he does. He just isn't real good with her meds or feedings or changing her. If she chokes a little he freaks out. He doesn't have the best of health either. I have 3 brothers and 1 sister with whom are all content with letting me do it all. Whatever as long it doesn't affect them. I am the youngest and they have all lives thier lives. My youngest brother is the only one who I know I can call and he will come without giving me attitude. They do all take a weekend which is fri night to sunday morning. I do get a break, but by the time some of them show up on Fri I am ready to go to bed. I love my saturdays. You don't know what a luxury it is to just pick up and go if you want to. Sometimes we have stayed at my dads house just to get out of the house and have a real break. I tell him it is like a vacation. I know that I am part of the problem. I get in trouble for that. I am just to giving. My brothers all look up to me and I do alot for them. Especially since mom's stroke I kinda took her role. I have a problem saying no. You are so right when you talk about balance. It is really hard to find. I think I am moving in the right direction in small moves. You don't know how big of a deal it was to move to my room again. I can sometimes feel the resentment sneaking in and then feel guilty about it. I don't think of her as a burden. I feel sorry for her. For Mekelly how disabled is your mom? We brought in a friend of the family that helps out occassionaly. Mom threw a huge fit when we did it initially but then she learned to like her. Now she enjoys the company. Sandy loves to gossip and keeps mom up to date. We pay Sandy to come out once a week for about 3 hours so me and my family can go out to eat and usually get grocceries. It was hard for me to trust someone else with her as well. I guess I need to get over my guilt with her. Why does it get to me so much more than the others? I need to learn to put myself first. easier said than done. I wish I just had it in me to be like this is what I need and I am sorry if it hurts you or upsets you. I am just not that person. Thanks to all that posted and for all of the support. I know I have talked about this before but, sometimes it just helps to get it off your chest. Ruth
  7. 4mom

    Thanks so much for everyone's wonderful advice. I have been so busy lately. My dad got sick and was in the hospital so I had both parents sick. It was crazy going from one parent in a hospital bed to the next. Trying to line up someone to come sit with my mom so I could go be with my dad. Ya know it is funny cause when someone is sick they just don't seem to be able to remember what the doctors say so with my dad I needed to be there when the Dr. came in and boy do they take thier sweet time. We have made some progress with my mom's bottom. I put a big garbage bag under her sheet that we use to turn her and it helps. She slides so much easier. Her bottom has started to heal. She saw the Dr. today and she reffered her to a dermatologist. He looked at it and said it is a stage 2 pressure ulcer. He said that it is because it is right under her bone and would not be caused from me sliding her to move her. He said there was a problem there to begin with and that the friction obviously did not help once the breakdown started. He is also sending her to a wound healing clinic next week so we will see what happens with that. I will let you guys know what happens maybe they will have some useful ideas. Thanks Ruth
  8. NOTE: This topic was split from the 'friends leaving' thread to prevent a hi-jacking. MBA: JR -------------------------------------------------------------------------------------------------------------------- Thank you all I really needed this website. I joined a caretaker support group once before and no one was really active in it so it is so nice to feel like someone is out there listening to me. I have my husband but I don't even think that he really understands. I try to make this as easy as possible on him. I really try not to ask to much of him. With my friends I just try not talking about it all the time cause I don't want them to get sick of it. I have a burning question and it sounds like alot of you are truly connected with God. How can you accept what has happened to you or your loved one? My mother has had honestly a rough rough life. She has had many horrible things happen to her. She has suffered more before the stroke than any one person should. How do I answer her when she says why me? Why did God let this happen to her? I think in my head that he can't be that cruel. He won't let her suffer like this for the rest of her life. They say that if you have faith then God will heal you. I just watched a telecast about healing and they said that you just have to accept it. You are healed, do you have the faith? So they said that if you are not healed it is because you haven't accepted it? So since she isn't healed are they saying that it is her fault? I even had a minister come over and lay hands on her. They read all the healing words in the bible saying you have the right to ask it of GOd and be answered. SO am I praying wrong? Have I been saying the wrong words for the past year and a half? I think for a long time I was mad at God. Why my Mom? WHy me? I know it sounds selfish on my part to say why me but this has taken away in many ways both of our lives. I have gotten over being angry at God and have asked to be forgiven for my anger towards him and given thanks instead for what she has recovered. I am thankful for the fact that she is till alive, but I also sometimes feel guilt over that. She wasn't able to make that decision and I did. Was it fair of me to put her through this or should I have let her go in peace and left her at the other hospital. Was it selfish of me to pray to God to keep her alive? If she gets better it will be worth it but if not does she want to live the rest of her life like this? I don't think so. I know that God doesn't make bad things happen to people. I just don't understand. You look at all the drug dealers selling drugs to kids or child molestors and wonder why not them? Why my mom who has never done anything wrong. She was a good mother, wife and friend. She never did drugs, maybee once a year had a drink . She did smoke. That was her bad habbit. Everyone tells me that God has a special place for me in heaven and that I will be rewarded. All I want for a reward is for her to get better. She is worth all of the hard work and I will devote as much time as needed to get the job done. I just hope it pays off for both of us. If anyone has any thoughts on this I would love to hear them. Thanks Ruth
  9. 4mom

    Back again

    The weekend is really a good time for me to take time out for me. I get to sit at the computer and relax for a little bit. Thanks to all that have replied. I really appreciate you taking time out to give me your thoughts and encouragement. First of all I will shed some light on my family situation. My parents were married for 31 years and have been divorced for about 10 years. They were married very young, 16. They began dating at 13 years old. They never really acted so much like they were divorced. My dad wouldn't let her go. He lets just say wanted his cake and to eat it to. He would come over every day even after they were divorced. They never quit loving eachother. When mom had her stroke it was horrible. My dad took it very hard and he suprised me but he was there the entire time. He even stayed with us out of town for weeks while she was in the NICU. I have never needed my dad so much and he really came through for all of us. He even came to see her in rehab hours away from home and drove me back and forth to the hospital. To this day he still comes over daily and helps out any way he can. He owns a bar and restaraunt so he is busy with that alot, but he makes time for us whenever we need him. He has been my biggest supporter. He is good at sitting with mom, but he doesn't do much else. He can turn her or empty the cath. or feed her pudding, but when it comes to changing her or using the feeding tube he is lost. My siblings are another story. I have 3 brothers and 1 sister (actually a half sister- My dad's daughter). I am the baby of the family. My sister is my biggest help out of my siblings. I don't know what I would do without her. Me and her were not really very close before mom's stroke, but now we are very close. Like someone mentioned I think most are "comfortable" with the way things are. I have went through many emotions about this. When we said we were bringing her home everyone said we were doing this together. The nurses and social workers had meetings with us and explained how hard this was going to be and how it was going to take all of us or I would burn out. Well everyone said they were going to do this and that, well that died out I think almost before we came home. They all do take a weekend. Some show up at 5 pm fri and some show up at 8 pm. Some leave at 10 am sun , my sister leaves at 1pm. They don't get how much I have given up or they just really don't care as long as they don't have to do more. I asked that they stay til 5 on sundays so we could go do something on sundays. I got well if we are there all weekend we have stuff to do when we get home on sundays. Whatever. They leave and say ohh I am going to go home and hit the couch. They are tired from getting up at night and taking care of her, HELLO!!!!!!!!!! Once a month not even 24 hours. WHat do they think about me? They don't even have to clean house or anything else that I do. THey never do excercises with her and most don't get her out of bed. I do almost all the transfering. I guess I got myself started. There is no resentment here :Tantrum: Anyway point is I have asked for more help and just haven't recieved. 1 brother just hired a nurse to come out once a week for 3 hours because he is to busy to come out which only hurt my mom even more. I have really been working on getting mom ok with me going back to my room. I so want to go back to my bed. She is scared though. I told her that for my birthday that is what I want. I have been telling her that for months. My birthday is this coming Fri. I just feel like she has been through so much I hate being the cause of more pain. I think it honestly would just take her getting used to kinda like making my son sleep in his own bed, but I haven't won that battle yet either. I am such a pushover. As far as putting her in a home that is not a option for me. I couldn't live with myself if I did that. She is to young and been to good of a mother to live that way. Some nursing homes are wonderful, but most are understaffed and have to many patients to care for. My grandma was in one and they were ok with her mainly because my dad knew alot of them and someone was there everyday. It is not for my mom. I love her to much and as long as I am able I will take care of her. She is worth the sacrafices that I have made. We have some things to work out and I am trying to ease her into some changes. Sometimes I just need a little reassurance that I am doing the right thing. Well my husband is waiting for me. He was busy playing a game until I decided to get on the computer now he keeps asking what are you doing? He must feel neglected. I better go see my boys. Ruth
  10. 4mom

    Tough week

    Well I haven't been able to work on my blog much lately. It has actually been a tough couple weeks. My whole house had the flu. Everyone recovered pretty quickly except for my son. He is four and the poor kid must have a weak immune system. He gets everything and anything especially the wierd stuff. He had the flu and then it turned into a viral infection that decided to show itself in his mouth. His mouth broke out in canker sores all over his gums and lips. His poor gums swelled over his teeth. It has been almost 2 weeks and he is just now getting to be able to eat because it hurt so bad. I can't brush his teeth yet because his gums bleed so bad. He has missed 2 weeks of pre-school. I pray he is all well and can go back on Monday. It has also been a very stressful time with my mom. Her stroke has changed her so much. Sometimes she is so selfish. She has been so moody lately. Actually throwing fits when she doesn't get her way. If she wants something and I tell her to hold on a second to let me finish say sweeping the floor, she pouts and gets all pissy. Then she won't (try) talk to me. I try telling her that I am doing my best but I have alot to take care of. When I clean she gets all quiet and you can just tell she is mad cause I am not paying attention to her. I can't handle living in a mess and neither could she. Yesterday was especialy tough. I had to got to a meeting at 10 am about my neices that live with us. So I had my dad come over and sit with my mom. First I had to get the girsl off to school, pick the house up, get my son dressed and I had to shower. Inbetween, mom had to have her feeding, meds and be turned, empty her cathetar. So I ran all morning. I came home and told mom I was going to take her with us to my sons Dr. appt so I didn't have to line someone else up to come out. She threw a huge fit, literally. She cired for about 45 minutes. I told her I was going to start banging my head into the wall if she didn't shut up!!! I was ready to go crazy. She lost the ability to cry softly so it is like a kid throwing a fit and my son has done nothing but since he has been sick. I wanted to run away. It is so hard. People say you have to take your emotions out of it, but I can't. It makes me feel like I fail when she is unhappy. I am basically responsible for her in every way including entertaining her. It isn't even comparible to a baby, because they need less than what she needs. She knows what she is missing out on. I get a break on the weekends, but it doesn't even feel like it because my siblings take turns and stay with her, but she still asks me to do things. Sometimes I hide out in my room because everytime she sees me she wants something. She sometimes won't ask them and waits for me to walk by. She will say ohh they have to work tommorow or I didn't want to bother them. She expects so much from me. I really don't think she can see how hard what I do is. I have 3 kids, her and a husband. I feel like I am always working. Someone always needs or wants something from me. It is like they think I don't get tired. It probally sounds like I am feeling sorry for myself, but I am not. I am really just frustrated right now. On her bad days like yesterday I feel like I can't take it. Most days I am good but the way her moods have been lately have been trying to say the least. The other night my husband wanted to watch house and tape deal or no deal, she got all mad because I taped deal or no deal and we watched house. The rest of the night she sulked and wouldn't look at anyone. She later told me I kissed his butt. She is crazy because I always kiss her butt. I baby her and have my whole life. Don't do this, don't say this I don't want mom upset. Trust me it caused problems for me and my husband way before the stroke. I just would always do anything to stop someone from hurting her. I always looked at her as so emotionally fragile. She has had panic attacks and at one point was institutionalized for attemtping suicide. She has had a rough life in so many ways. I can't stand seeing her hurt anymore. I love her so much. It should be obvious to her, but she questions it and it kills me. Yesterday after she calmed down she asked if I loved her. I get mad when she says stuff like that now. She also says she is a burden and no-one wants to take care of her. I don't do anything to make her feel that way. I try very hard to not make her feel that way. Yes sometimes I get crabby and a little short when I get tired, but I always tell her I am sorry mom I am just tired. She knows I don't ever sleep well. We have been sleeping on a very uncomfortable pull out couch for 2 years in the living room next to her and I have to turn her every 2 hours plus I have insomnia which was being treated before her stroke. So on top of all I do I don't get the proper rest. I think anyone would be tired. On the weekends I take sleeping pills to that I get a full nights sleep, but it doesn't make me feel like I caught up on my rest. I just wish she could be a little more understanding. How do I make her understand without making her feel like more of a burden. I tell her how happy I am to have her here no matter how much work she is. I thank God everyday that she is still alive. I wouldn't give her up for anything. I just get tired. Well there is my whining for the day. I just needed to get it off my chest.
  11. 4mom

    Thought I would give this a try

    Well I have been thinking about starting a blog for a while now. I just haven't been taking much time out for myself lately. I have not been very active on the board recently and I really miss it. I am 28 soon to be 29. I have a 4 year old son named Tristen and have been married for 9 years. My mother had her brainstem stroke almost 2 years ago at the age of 55. Like most it was a complete shock to my family. Our worlds were turned upside down. I became her caretaker as she requires 24 hour care. 1 year ago my brother began having some problems and I took in his twins. They are now 6 years old. I think it is safe to say that me and my husband's plates are pretty full. Sometimes I wonder why we take on so much. I just have a hard time saying no! Our lives have changed in so many ways since this stroke took over. It has taken away so much from us. My mom lost it all and I still sometimes struggle with why? I think why couldn't she have been lucky and only lost one side? I know to those who have lost use of one side they do not feel lucky but when I compare them to my mom it is almost incomparable. She lost the ability to do anything for herself. She can't eat, talk, use her arms or legs. She is tube fed and has a catheter. I don't want to sound ungrateful because I can find good things such as she was removed from life support and had her trech removed. She can now drive her wheelchair with her hand. She can play a computer with a ball mouse. She can swallow pudding and she can speak a little. I of course understand her the best. Just like my kid. I always try and point out what she can do. I try to focus on that rather than what she lost. My mom struggles with depression daily. Sometimes it is very hard for me to deal with. I hate seeing her hurt. She asks me why I want her around? What good is she to anyone? I tell her I am so thankful that my mom is alive. I really struggled with my decision was I right to fight to keep her alive or was I just being selfish? She is worth all of the work to me. I want her. I can still hug her and talk to her. Yes she is different but she is and always will be my mom. Most days she says she is glad she is alive, but on the really bad ones she cries that she wishes she wasn't. I don't know that I would feel much different. Being a caretaker a mom and a wife is a ton of work. It is a huge balancing act trying to do it all. You really cannot make everyone happy. It makes me sometimes feel like a failure. I need to do more of everything but sometimes I just run out of gas. The kids need more work with school, mom needs more therapy, the house needs to be cleaner and then there is my husband. Every night I pray for energy to keep me going. I feel like I cannot give anything a 100%. I try but it is not possible. I think we can just do our best and try to accept that is all we can do. At the end of the day I don't think anyone of us expect our lives to be like this, but we got what we got and we can't change it so the best you can do is keep going and make the best of what you have. I am hoping that my blog will help me get out some of my feelings and bring me a inner peace with life after stroke. Ruth
  12. 4mom

    Thanks so much for your comments. It truly feels so good to be able to share my feelings with others that don't have a emotional stake in how I feel. I can't hurt your feelings I guess is what I am trying to say. I don't want to come out as a whiner but it feels good to get it off my chest. I have good friends but I don't always like to share this with them. I don't want it always to be about me and always talk about the same things with them. You guys on this site truly understand what me and my family are going through and it helps knowing that there are others out there. At times this feels so isolating. It was really bad in the begining before I found this site because there are no support groups around here. So thanks again. Rut
  13. 4mom

    Hello, I am glad your treatment is working for you. I looked in to it for my mom and I got scared off. I give you credit for your bravery. My mom stroked at 55. We went to the ER and she was sent home after a catscan with a migraine. She could barely walk. Hours later we returned to the ER and were told she had a minor stroke. They said the only treatment was aspirin. They admitted her and put her on the regular floor. Her Dr. said she would be fine she would need a few days in the hospital and a few weeks in rehab. As the hours went on she lost the abilty to swallow and breathe on her own. When the nuerologist decided to come see her for the first time after his office closed he called us in a room and looked at us and said she is going to die as he shrugged his shoulders. Like no big deal. We had her transferred to another hospital. The new Dr. had her started on a blood thinner before they would let them fly her and he looked at the MRI and said there is no way it could have been read as minor. She had a brain stem stroke. We never heard of TPA or Heparin or anything til she got to the new hospital. Everyone told us we should contact a lawyer. We were so mad that there was something that could have helped her and they didn't use it or even discuss it as a option. Now she is quadraplegic and unable to do anything for herself. Our lawyer got all of her medical records and had some doctors review them and it came down to us having to prove that had they given her the shot it without a doubt would have made a difference. He said that nuerologists are divided on the drug and that we could have a handful of ones to say yes and they would have 10 that would say no. IT didn't matter that we were misinformed about her stroke would it have changed the treatment that they did and the answers were No. Each hospital has a set of standards that Doctors have to follow and if they meet those standards then there is no negligence. It just doesn't seem fair. If we would have known how severe her stroke was we would have had her moved right away when she was still able to walk and talk. We blamed ourselves for a long time. If only we would have taken her to another hospital would she be where she is. Good luck to you and I think you are right if you can open thier eyes and make them treat stroke patients better or make them more knowledgeable then it is worth it. My mom was given the shot eventually way past the window of time they use it for but she was loked in and the Dr. was willing to try anything. Her prognosis was poor. Maybe that is what brought her back to us. She has little movement now and on some days can speak some. Who knows if they had given it to her right away maybe she wouldn't be stuck in a bed. Ruth
  14. 4mom

    Hi Joe Ann. Welcome to the scariest roller coaster you will ever ride, The Evil Stroke! My mom stroked at the age of 55 and her stroke was a brain stem stroke. Her stroke stripped away everything from the ability to walk, talk, breathe and swallow. She basically lost it all. It has been almost 2 years. The longest 2 years of my life. My mom is/was my best friend. It is so hard to accept that your parents have changed. I would give anything to get my mom back. Doesn't it seem odd that you grieve for someone who is still here? I am her care taker and she is unable to do anything for herself. SHe has a feeding tube and cathater, she needs to be turned every 2 hours to prevent bed sores. I also have 3 kids twin 6 year olds and a 4 year old. It is a hard job taking care of everyone. It is hard spreading yourself out to give everyone enough time. My mom and my son were so close when mom had her stroke. He was only about 2 when it happened and he was scared of her at first as well. Now he is what keeps her going. I love it. He can make her smile when no-one else can. It hurts her watching him grow up and having to lay there and watch it happen. I tell her she plays in her own way. He loves her to death and now grandma is normal to him. He climbs in bed with her, rides on her chair and he is always trying to feed her. They are trouble together. I really think your kids will come around. Just don't force it let it happen at thier own pace. My mom has changed so much to. She can be very demanding mostly to me. When my brothers or sisters are here she asks alot less from them. She feels the most comfortbale with me. I am 28 soon to be 29 just like you. I admire you taking care of your father. I truly know how hard it is. My best advice is try to keep your emotions away from your father. I get upset with my mom sometimes but I never let her see it. I know how horrible she already feels I will not add to it. It gets hard sometimes keeping my feelings in check. Somedays I just want to scream what about me, what about what I need??????????? That is when I turn my head close my eyes and scream inside. I tell myself she did not ask for this and did not deserve this. I know she would rather be doing for herself than having me do it. I am just thankful she is still here fighting for me. You have a long road ahead of you with lots of ups and downs. I wish your husband didn't have to leave you so soon. I am sure you could really use his support. I don't know what I would do without mine. I think one of the heardest things for us was feeling so isolated. When mom was in the hospital there were so many people around, but when she came home everyone dissapeared. Friends, family all gone. There were no support groups in our area and we were on our own. I found this site looking for research on accupuncture. It was a life saver for me. I found it when I was at one of my lowest points. I was filled with anger and greif and it helped me through it. Now I find less time to get on the site as I am so busy, but it has meant alot to me. There is so much support and knowledge from the people that know the best. Love and prayers Ruth
  15. 4mom

    I have been caring for my mother for almost 2 years. It has been a long rough road with lots of adjustments. I am still dealing with lots of bouts of depression with her. I don't know what I would do if she were mean to me. She has irrational thoughts and feelings that at this point I just want to scream at her. It is very hard to not take offense to it. I get so sick of hearing she is a burden and that she is wrecking my life. I am doing my best to not make her feel that way and it truly makes me feel like a failure. I think caregiving for someone who is completely dependent on you is the hardest job in the world. I would never give her up not for anything but It wears you down. There is never time for you. After 2 years of getting up every 2 hours to turn her my body is so out of wack that I don't sleep hardly at all during the week. On the weekends when I have a little relief I take sleeping pills. There is so much work that needs to be done. I like you have small children a 4 year old and twin 6 year olds. It is alot of work. It is so hard to understand that our loved ones are so different when they look the same. It is hard to let go of who they were. I miss my mother horribly. Isn't that crazy to say when she is still here. It is hard to see how selfish she can be sometimes. I am her securtiy blanket and she hates it when I leave. I struggled with that for so long. I let her make me feel guilty for so long. I hope that the Dr. can help you guys. I am sure this isn't how he wants to be either. Strokes are just evil monsters. They really hurt the whole family not just the survivor. Good luck and God bless Ruth
  16. Any updates on your husband? I hope everything is ok. I have been thinking about you allot and watching for a new post. If you find the time please let us know how everything is going. Take care Ruth
  17. I am the caregiver to my mother who was also locked in. She had her stroke at the age of 55. We were told that her prognosis was poor and that she had a 1 in a million chance of surviving. She was locked in for about a week. She was only able to move her eyes up and down. Her mind was completely there but she was unable to communicate other than by blinking for yes and no. She was on life support for about 2 weeks before they started to weing her off. She had a trech for about 2 months. The first thing she moved was her right foot. Then she began to move her head. It has been almost 2 years and the progress has been extremely slow, but she is here. I think it is a good sign that he is moving his foot and squeezing your hand. It means that there is some flow of blood. That is what her Dr. told us when she started to move. Do not let them force you into a decision you are not ready to make. Take your time. 1 week out is so soon. Make it clear that you are not giving up on him and you won't let the doctors either. It will be a rough road. Make sure to do range of motion excercises with him. They are so important. Once the muscles tighten it is so hard to get the range back. If you have any questions feel free to Pm me. We have been through it and I know how hard it is. Many prayers Ruth
  18. Steve I am not against stem cell treatment and personally would do anything to make my mom well. I have watched my mother suffer for almost 2 years unable to do anything for herself and would love it if this were the key to making her well. I have no reason to be againgst stem cell. I am someone that doesn't even really have a ethical issue with it. I would love to see this be the answer to all who suffer with debilitating diseases. The truth is that there is no documented information on success with this treatment. I think that there are alot of people on this website that would love for this to be the answer to thier prayers. Do you really think that noone should question this? There are lives at stake here. If you were going to have this treament done would you not want to know what your real chances of success were or what the risks were? I was really close to taking my mom for the treatment in Tiajuana and I would in a heartbeat if I had more evidence that it works and wouldn't hurt her. I have someone willing to pay for it. I think there are alot of important questions that need to be answered before someone should have this done. I realize that SCTI is a small company promoting thier service and trying to get the word out. When someone makes a educated decision they have to weigh the negitaves against the positives. I think that is all anyone is trying to do. Thanks Ruth
  19. Peter, Thanks for the fast response. I understand that you are a very busy man. That is why I had asked if someone else could help. When I first heard about this treatment and saw Ian's improvement I wanted my mother to have it "Now". We have watched my mom suffer for almost 2 years unable to do anything for herself, so you can imagine my hastiness for answers. We thought if it could help her regain even 1 thing it would be worth it. I started reading some of the other links mentioned on this website and saw some things that scared me. Yes you know the difference between the types of stem cells but it is all new to me. I would never want to risk making my mom worse after we have worked so hard to get her where she is. As far as Ian goes you offered me his email address I did not ask. I asked for more stories about success with this treatment on stroke patients. It sounds as though not many stroke patients have been treated. You just do not read anything that talks about alot of real success with it yet. I hope that it can help everyone suffering with these debilitating diseases. It would be a miracle. Hopefully when this is a treatment more people have done the cost will be able to go down or insurance will eventually pay for it. If someone needs 2 treatments like Ian is going to have his second it is $60k. Not many can afford that. I recieved the handbook back in April and call me stupid but as I told you alot of it was medical terminology that I did not understand. I did take the time to read it. I was actively pursuing this for my mom. Thanks again for you quick response Ruth
  20. Peter, It is nice to hear all the information that you offer. I have spoken to you a few times on the phone and via email regarding treatment for my mother. I have found it very hard to get my questions answered. I mentioned this to Steve and he said that he has found that you reply very quickly to him. Me and my family were very interested in doing this for my mom. We even had financing for it. I asked very specific questions of you and I did recieve answers to some, but not all. To some of the questions I to be honest felt your answers were evasive. You even offered to supply me with Ian's email address so I could ask him questions directly and I never got another email with that info either. My first email to you with my questions I waited almost 2 weeks for answers (which you said I would have within the next couple days) and inbetween I sent additional emails asking if there were someone else I could contact to get the answers. I am not a impatient person it was a decision we felt ready to make with all the answers we needed. I realize you are a busy man and seem to be busy actively promoting this now. It would be nice to hear of more success stories on stroke patients than just Ian. It is wonderful to hear that he is having success but what is the ratio of those who have success to those with no change? How many stroke patients have been treated? I have also read some articles about large tumors developing in the brain that grew teeth and bones. The fact that I had such a hard time getting the answers scared me off. Ruth
  21. So today is the big day! I hope everything is going well. It is a whole new world when you come home. I like you couldn't wait to get my mom home. I had been away from my husband and 2 year old son for 2 months. It was so hard. I just wanted to get home and settle in a routine. It was so depressing being at a hospital or rehab facitlity all the time. I was doing all the work anyway. Once they showed me how to do something I took over on it. Mom had the trech also and we used to sit and wait for respitory to come and put on her pacimere valve before she could start her therapy. I finally just started doing it myself one day. I just took charge. I think in the end it has made me allot stronger as her caregiver. I remember how tired I was. I barely got any rest at the hospital because I did do it all and I had to sleep in a chair. I even got to the point where I did all her feedings. All they did was clean her room and give her any meds and only because I legally couldn't. I remember calling for them to put her back to bed one day. They always used 2 CNA's to do it. We waited for 45 minutes and she was really hurting. She begged me to do it. I had been shown how to do it and had done it a couple times but never without someone there to help incase something went wrong. I gave in and did it. From that point on I had to do that all the time. I guess it took just doing it to get the confidence. I learned so much, before this I was a head teller at a credit union. No nursing experience at all. All I can say is get ready for allot of ups and downs. I try to just roll with the punches. There are really good days and really bad days. There are days that I feel so tired I don't want to function. Be patient with yourself. It is hard taking care of a house and your loved ones, but it is worth it. I do get tired but I wouldn't change my decision. Take care I hope to hear how it is going. This site has been wonderful for me. Ruth
  22. 4mom

    My mom also has complete sensation and she also gets sore from sitting all day. Recently she has been complaining more about her back hurting , like her spine is pushing into her chair, than her bottom. In the beginning she could barely sit a hour. Now she tolerates about 4-6. Big improvement. It was so confusing to me in the begining about her being able to feel and them saying she was paralyzed. We have always been told that it is a good sign that she has sensation. For whatever that is worth. Ruth
  23. 4mom

    Steve, I am like the many others that have thanked you. This site has been like a life line to me. I am the caregiver to my mother who had a brain stem stroke and we were so isolated before I found this site. It has done more for me than paying for therapy. My mom's stroke left her completely disabled and unable to speak just like you. We were told by the doctors that this type of stroke was very rare and her condition locked in syndrome was also very rare. When I tried to find info on the net about it I think I found a 3 sentence paragraph that said that the prognosis was very poor for patients with this. I was so excited to hear others stories that had been where she has. It has truly been a comfort. I think that you truly turned your stroke into something positive for others. You have made a difference in the lives of others and I think that is what most hope to accomplish in thier lives. :Clap-Hands: You should be proud of yourself. Thanks to you and Missy for all of your hard work Ruth
  24. 4mom

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  25. I could not imagine loosing my child. You think as a parent you are suppost to go before your child. Sadly it doesn't always work that way. I have to say that you are a strong strong man to still be functioning. You have definitely had more than your share. They say that God never gives you more than you can handle, but I have to ask how much can one person bear? I am a caretaker to my mom who stroked at 55. She lost it all. She has slowly regained very little but is still making progress. My mother was locked in and only able to move her eyes. I get what you say about your wife being in there somewhere. I still have my mom to, but it is nowhere close to being the same. I am trying to accept that it never will be the same again but it has been a slow process. I want her back still. She is quadreplegic now and literally unable to do anything for herself. I am more than happy to be taking care of her because she is still here. That is what keeps me going. Recently one of my dads good friends was planting trees in our lots next to our house. He was here Wed, thurs and fri of last week and on sunday his aunt called to say that he had a brain aneurisom. Completely fine one day and 2 days later slumped over the wheel of his truck unconscious. Yesterday the Dr. said he is brain dead. Today his family took him off life support. When they took him off he started breathing on his own. I am not sure what that means, and we haven't heard a update in several hours. The point is I feel really lucky when I hear stories like that. My moms stroke was devastating and I can't think of many things worse but this was one of them. She is still here the same or not. I can tell her I love her and she can say it back. It is one of the few times I can say I feel lucky about her stroke. Keep up your hard work. I admire you for your courage. Your wife is lucky to have such a strong man to support her through all this grief. I don't know how you and her manage. Here's to better days Ruth