4mom

Stroke Caregiver - female
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Blog Entries posted by 4mom

  1. 4mom
    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
  2. 4mom
    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.
  3. 4mom
    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