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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
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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
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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.
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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
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improved walking!...and possible malpractice...
4mom commented on rj711's blog entry in rj711's Blog
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 -
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
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Does it ever get any easier????
4mom replied to al belfield's topic in Post Stroke Feelings and Emotions
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 -
Your father also may just be coming to undertand what happened to him. I think that it takes a while for it to set in. My mother was locked in (only able to move her eyes up and down, couldn't even breathe on her own) for about a week. She is 1.5 years post stroke and doesn't remember the first 2 weeks after her stroke. The doctor started my mom on zoloft for deppression right away as she has always had problems with depression and anxiety. He may need reassurance that he has a chance of getting better. He may think this is it. 3 weeks must feel like forever to the patient but in stroke rehabilitaion it is like a second. This past year and a half has been the longest for me and my mom, but tell him he can't give up. Every gain is worth the work. My mom has went through spurts where she doesn't want to work anymore, and I think that everyone prob. does. Her stroke was in her brain stem and she literally lost it all. Today to a outsider they prob. don't think she has come very far, but if you think about someone that could only move her eyes to now it is a long long way. I also told her that if she gives up then I am which means I will put her in a nursing home cause I am not busting my but for her if she isn't doing the same for me. I never would and she knows that but I don't want her to give up. There is so much hope still. Don't be suprised to see your father have major mood swings such as uncontolable laughter or crying. It is a common side effect of strokes. I remember when it started with my mom it was so hard. One day we went to a educational movie about strokes where the whole rehab group was there and just out of the blue she started wailing, I say wailing cause it was so loud. Everyone turned and started staring at us. It was the only time I ever felt embarassed by her. I was so ashamed of myself for feeling that way, it was just my gut reaction. I knew it wasn't her fault and she would never want to call attention to her self like that. That day it took over a hour to calm her down. Therapists ended up coming in. To this day she has lost the inappropriate laughter, but still has issues with crying. We all thought in the begininning after her stroke she is laughing and smiling more than we have ever seen her before, then someone explained it to us. I thought in the begining I was so happy she could cry when they capped her trech. I thought finally a way for her to express herself. It prob. felt good to just make noise. Now when she starts I want to run for the hills. It can go on and on and on. I have learned to ingnore it or at least most days I try to. If I play into it, it goes on and on. So distracting her or by changing her settings sometimes it works. Also like they said changes in medication can affect them. One day we came up to see my mom the only time I left her alone and they had put her on baclofen for spasticity. I called the doctor in cause she had changed so much. She was almost lathargic. Once she adjusted to the medication she came back to herself, but I didn't like it. My mom also gets so weak when she has a infection. It zaps her and she always has a set back. Just recently she was hospitalized her central line had gotten infected and she ended up spending 4 days in ICU then 6 more on the reg. floor. This was in Jan. Just nw she is getting her strength back. She really lost alot. Now we have to work hard just to get her back up to where she was. It will be a long battle and it won't always be uphill, but look at the alternative. I would rather fight the battle. How old is your father? Does he have any movement yet? The first thing my mom regained was her middle finger on her right hand. Yep so she flipped everyone off all the time. The rehab doctor said he would know she was recovered when she could flip him off with both hands. Good luck and lots of prayers Ruth
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I get the tired and ready to collapse comment. I have been taking care of my mom for 1.5 years who is now quadraplegic and I have a 3 year old and twin 5 year olds. Being a caretaker is a never ending job. Some days I literally feel like I have to kick myself out of bed. On thurs. I told my mom I was taking a personal day. I only did what I had to and I sat on the couch (felt terribly guilty) andn watched tv. I am always tired. I have help only on the weekends, but I usually don't sleep on Fri cause my system is all out of wack from getting up every 2 hours to turn her during the week that I just can't get in the rythym or I worry if they are waking up with her. Does your wife nap? My mom doesn't but I am told that is a great time to get rest if they do. As fas as the stomach goes, if she is not regular that can make her belly bloated. My mom went for 3 weeks w/o haveing a bowel movement after the stroke and the doctors and nurses also were not concerned. When they moved her to the rehab hospital she was impacted and the nurse literally had to help pull it out. She was in so much pain. Sorry if that grosses anyone out. They put my mom on senocot (over the counter stool softner), ducolax suppositories (over the counter) and a liquid called colace (prescription) to help her with her bowel movements. I still have to give her the suppository every other day to make her go she doesn't on her own. That really helped and it helped her feel better. Is she in pain? Can she use a bed pan or does she wear diapers. My mom is in diapers. It was hard cleaning her the first time but I made myself jump right in and we try to make a joke about it. Thank god she has a good sense of humor about it. I am sure it is humiliating. She has handled it better than I ever thought she could. Hang in there and take any opportunity to rest that you can.