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Denial.......? Fear?
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<blockquote data-quote="dreamer" data-source="post: 125678" data-attributes="member: 1697"><p>I keep thinking of how to say what is on my mind without needing so many words to do so- I am not succeeding.but several people here have said some great things. </p><p>I was so ----lots of emotions- when my husband was sick. I hated him sometimes, partly becuz he was sick, and he could not do a lot of the things he used to do. I thought it was unfair, I felt like I had gotten ripped off, felt like hey this was not part of the deal- I resented haveing to pick up the slack and do the things I always did PLUS the things he could no longer do and then add on that there were things for him that I had to begin doing- like feeding him? </p><p>So many times people around me said things like - you deserve better, you deserve more, this is not fair to YOU. </p><p>when we realized oldest was difficult child I was upset- among other emotions, and worn out....so much work involved in having a difficult child. It put so much on my plate, and I was so busy all the time, every day, 24-7. Sometimes I thought WHOA this is more than I bargained for. </p><p>Then I got sick. ANd boy did I ever- and suddenly no part of my body worked. and my brain sorta went on strike- in hindsight I think yes, it was partly the pain was so mind blowing, and the other part was some escapism. I could not face that here I was, ME who had been careprovider in my work life for comatose patients, and here me, who had been caregiver for my first husband, my in laws and more- and now I was totally helpless myself- me who had always been able to work thru anything---do what had to be done- and now here I laid. Not only could I no longer do things- but I now needed someone to change ME, feed ME. etc. SLowly I realized that my family had been acustomed to me taking care of EVERYTHING......now not only did they have to take care of themself, but also now they had to also take care of ME. I had spoiled them. It was hard for them. They did not do a very good job...partly becuz they did not know how, partly becuz they were exhausted, partly becuz they were scared to peices. I guess me and them all assumed I would live forever and be in perfect health forever? We had to face brutal reality, and do it in a crash course against our will. </p><p></p><p></p><p>Now see, - I used to have my own times of resenting my husband and difficult child and sons etc. I used to holler and whine that it was not fair to me that their issues were so hard on us here. Not fair I had to attend IEP meetings, staffings, endlessly. WRAP meetings, not fair I had to get husband to his day treatment, or do chores that should have been his. I as not always very good about makeing sure I kept my complaints away from their eyes and ears. I mean gosh- look, I was doing so much FOR TTHEM. Did they appreciate it? </p><p>Well, after I was sick awhile- I suddenly realized, wow, now the table is turned. I now caused them to have to be out of THEIR comfort zone. My illness was impacting THEIR day to day life. </p><p>Now THEY had to do the things I no longer could. Now before they went off to school they had to change me, set me up food, make sure I had a phone clipped to me! </p><p>It is one thing to know this is how it "should be"- but few families have to FACE this reality day to day 24-7 to these levels. Sure we assume if something like this occurs in a family, we will all simply pull together, work together and things will magically fall into place. Reality is, it is hard. It is a demanding lifestyle. And not knowing if or when any of it will change, or get better, or God forbid- get worse? That adds to the stress. and the constant continued stress has an accumulative effect that it continues to wear people down. and it builds. </p><p></p><p>Just like we come to this message board and sometimes we have a need to vent about how difficult our lives have become becuz we have a difficult child? The caregiver loved ones in the lives of chronically ill people also sometimes need to vent, sometimes feel overwhelmed, and sometimes do not know what to do, how to do it or even if they CAN do what needs to be done. Our mind can know what should be, or our mind can know what is logical, but when we live 24-7 high stress, and unsure future- our logical mind is NOT always what is going to guide our actions, our thoughts, and our words. </p><p>I would hazard a guess your husband is prolly haveing some sleep difficulties of his own- between your erratic schedule- and his fears and worries- he prolly has some sleep deprivation going on.....even if it is low key, it is prolly by now relatively long term. This IS going to affect his ability to remain solid stable and logical 24- 7. Your medications prolly DO make you somewhat erratic etc--with mood etc.....and he may not always know whether something you are doing or saying is based on reality or mood swing or whatever, or if you remember something or not etc. High possibility even you yourself do not always know. Your actions and words may currently be vastly different than they used to be- and he may be wondering gosh where is my wife? who is this in her body? AAnd becuz of the effects of some of your medications- things he maybe used to be able to say or do and you would react to them, possible now you do not react the same. </p><p>I know there were a lot of times I looked at my husband and said - (well, OK screamed) at him WHO ARE YOU? what have you done with my best friend? where is he? give him back right now! I do not know YOU what are you doing in MY house, get out! and there are LOTS of times now when my husband or one of the kids will be expecting one reaction from me- but this long term limits of mine has changed my expectations and my reactions and they say to me, wow- mom? is that YOU? Uh yeah, I think it might be me, maybe it is a new me---becuz see, now that I am simply so grateful that I am still alive and very grateful I again can walk? I no longer get unglued about some of the things I used to blow a gasket over. I am so appreciative that I have my husband to converse with SOMETIMES now....that I now am not quite so upset he cannot remember things for more than 30 seconds. I am so tickled to see difficult child did not suicide in the nite, I now do not care if she plays her music full blast. I am glad she is alive to do so, glad I am alive to have to listen to it. A new me, a different me. VERY different than the pre sick me. </p><p>Now if I cannot make my hands cut veggies for soup- well, LOL, we have new choices. SOmeone else can do them, or we can throw them in the pot how they are- or we can skip them, or we can skip dinner entirely. I no longer struggle to do what I cannot at the moment. I no longer scream and demand someone else come do it.....now mostly I simply shrug and say oh well. See, it is not my fault I cannot always do it. and it is not their fault I cannot always do it. It just is. Will it be different tomorrow? I have NO idea. Maybe. Maybe tomorrow there will be a cure for my illness. Maybe I will be hit by lightening tonite. Maybe one of them will get hit by a car in the morning. Tonites soup pot will not be important tomorrow. Not my fault, not their fault. It just is. </p><p></p><p>Yes, it is their right to be angry I got this darned illness. Yes it is my right to get angry they have their illnesses. It ALL stinks. Its NOT fair. To any of us. After we have our lil tantrum over it, we go back on moving forward, anyway. Hanging together becuz in spite of it all, we love each other anyway. Unconditionally. In spite of bipolar and panic, thru catatonia and fugues and disaasociative states and cancer, despite mobility issues and weird auto immune garbage, whetehr we can see or not......and as we go we learn new and better ways to get thru it and live life around all these things. </p><p>And yes, we do manage to live around and thru all of it, so far. LOL. If husband is catatonic, we feed him and go about our business. If difficult child is panic struck we grab her hand and drag her thru whatever needs to be done, if I cannot walk, they toss me onto my scooter and on we go. when one of us says "this stinks" we all agree and go on. if one of us says hey, you did not do your share- we smile and say ok. acknowledge it and move on. </p><p>Our most said thing might be----Love ya anyway. </p><p>Love ya anyone.</p><p>Or maybe- hey is someone gonna die becuz that happened or did not happen? if no- hey let it go, love ya anyway. </p><p>If we wake up and all of us are haveing a GOOD day? we seize the moment, hard! </p><p> </p><p></p><p>Hugs to you------the things I said? Nah, it did not come easy, did not happen easy, and might not be the things that will work for you.....</p><p>In any event, my thoughts and prayers are with you-------and your husband, and kt and wm. One family members illness DOES affect everyone and it is hard for everyone and hard on everyone. Many gentle hugs. and you always are in my prayers.</p></blockquote><p></p>
[QUOTE="dreamer, post: 125678, member: 1697"] I keep thinking of how to say what is on my mind without needing so many words to do so- I am not succeeding.but several people here have said some great things. I was so ----lots of emotions- when my husband was sick. I hated him sometimes, partly becuz he was sick, and he could not do a lot of the things he used to do. I thought it was unfair, I felt like I had gotten ripped off, felt like hey this was not part of the deal- I resented haveing to pick up the slack and do the things I always did PLUS the things he could no longer do and then add on that there were things for him that I had to begin doing- like feeding him? So many times people around me said things like - you deserve better, you deserve more, this is not fair to YOU. when we realized oldest was difficult child I was upset- among other emotions, and worn out....so much work involved in having a difficult child. It put so much on my plate, and I was so busy all the time, every day, 24-7. Sometimes I thought WHOA this is more than I bargained for. Then I got sick. ANd boy did I ever- and suddenly no part of my body worked. and my brain sorta went on strike- in hindsight I think yes, it was partly the pain was so mind blowing, and the other part was some escapism. I could not face that here I was, ME who had been careprovider in my work life for comatose patients, and here me, who had been caregiver for my first husband, my in laws and more- and now I was totally helpless myself- me who had always been able to work thru anything---do what had to be done- and now here I laid. Not only could I no longer do things- but I now needed someone to change ME, feed ME. etc. SLowly I realized that my family had been acustomed to me taking care of EVERYTHING......now not only did they have to take care of themself, but also now they had to also take care of ME. I had spoiled them. It was hard for them. They did not do a very good job...partly becuz they did not know how, partly becuz they were exhausted, partly becuz they were scared to peices. I guess me and them all assumed I would live forever and be in perfect health forever? We had to face brutal reality, and do it in a crash course against our will. Now see, - I used to have my own times of resenting my husband and difficult child and sons etc. I used to holler and whine that it was not fair to me that their issues were so hard on us here. Not fair I had to attend IEP meetings, staffings, endlessly. WRAP meetings, not fair I had to get husband to his day treatment, or do chores that should have been his. I as not always very good about makeing sure I kept my complaints away from their eyes and ears. I mean gosh- look, I was doing so much FOR TTHEM. Did they appreciate it? Well, after I was sick awhile- I suddenly realized, wow, now the table is turned. I now caused them to have to be out of THEIR comfort zone. My illness was impacting THEIR day to day life. Now THEY had to do the things I no longer could. Now before they went off to school they had to change me, set me up food, make sure I had a phone clipped to me! It is one thing to know this is how it "should be"- but few families have to FACE this reality day to day 24-7 to these levels. Sure we assume if something like this occurs in a family, we will all simply pull together, work together and things will magically fall into place. Reality is, it is hard. It is a demanding lifestyle. And not knowing if or when any of it will change, or get better, or God forbid- get worse? That adds to the stress. and the constant continued stress has an accumulative effect that it continues to wear people down. and it builds. Just like we come to this message board and sometimes we have a need to vent about how difficult our lives have become becuz we have a difficult child? The caregiver loved ones in the lives of chronically ill people also sometimes need to vent, sometimes feel overwhelmed, and sometimes do not know what to do, how to do it or even if they CAN do what needs to be done. Our mind can know what should be, or our mind can know what is logical, but when we live 24-7 high stress, and unsure future- our logical mind is NOT always what is going to guide our actions, our thoughts, and our words. I would hazard a guess your husband is prolly haveing some sleep difficulties of his own- between your erratic schedule- and his fears and worries- he prolly has some sleep deprivation going on.....even if it is low key, it is prolly by now relatively long term. This IS going to affect his ability to remain solid stable and logical 24- 7. Your medications prolly DO make you somewhat erratic etc--with mood etc.....and he may not always know whether something you are doing or saying is based on reality or mood swing or whatever, or if you remember something or not etc. High possibility even you yourself do not always know. Your actions and words may currently be vastly different than they used to be- and he may be wondering gosh where is my wife? who is this in her body? AAnd becuz of the effects of some of your medications- things he maybe used to be able to say or do and you would react to them, possible now you do not react the same. I know there were a lot of times I looked at my husband and said - (well, OK screamed) at him WHO ARE YOU? what have you done with my best friend? where is he? give him back right now! I do not know YOU what are you doing in MY house, get out! and there are LOTS of times now when my husband or one of the kids will be expecting one reaction from me- but this long term limits of mine has changed my expectations and my reactions and they say to me, wow- mom? is that YOU? Uh yeah, I think it might be me, maybe it is a new me---becuz see, now that I am simply so grateful that I am still alive and very grateful I again can walk? I no longer get unglued about some of the things I used to blow a gasket over. I am so appreciative that I have my husband to converse with SOMETIMES now....that I now am not quite so upset he cannot remember things for more than 30 seconds. I am so tickled to see difficult child did not suicide in the nite, I now do not care if she plays her music full blast. I am glad she is alive to do so, glad I am alive to have to listen to it. A new me, a different me. VERY different than the pre sick me. Now if I cannot make my hands cut veggies for soup- well, LOL, we have new choices. SOmeone else can do them, or we can throw them in the pot how they are- or we can skip them, or we can skip dinner entirely. I no longer struggle to do what I cannot at the moment. I no longer scream and demand someone else come do it.....now mostly I simply shrug and say oh well. See, it is not my fault I cannot always do it. and it is not their fault I cannot always do it. It just is. Will it be different tomorrow? I have NO idea. Maybe. Maybe tomorrow there will be a cure for my illness. Maybe I will be hit by lightening tonite. Maybe one of them will get hit by a car in the morning. Tonites soup pot will not be important tomorrow. Not my fault, not their fault. It just is. Yes, it is their right to be angry I got this darned illness. Yes it is my right to get angry they have their illnesses. It ALL stinks. Its NOT fair. To any of us. After we have our lil tantrum over it, we go back on moving forward, anyway. Hanging together becuz in spite of it all, we love each other anyway. Unconditionally. In spite of bipolar and panic, thru catatonia and fugues and disaasociative states and cancer, despite mobility issues and weird auto immune garbage, whetehr we can see or not......and as we go we learn new and better ways to get thru it and live life around all these things. And yes, we do manage to live around and thru all of it, so far. LOL. If husband is catatonic, we feed him and go about our business. If difficult child is panic struck we grab her hand and drag her thru whatever needs to be done, if I cannot walk, they toss me onto my scooter and on we go. when one of us says "this stinks" we all agree and go on. if one of us says hey, you did not do your share- we smile and say ok. acknowledge it and move on. Our most said thing might be----Love ya anyway. Love ya anyone. Or maybe- hey is someone gonna die becuz that happened or did not happen? if no- hey let it go, love ya anyway. If we wake up and all of us are haveing a GOOD day? we seize the moment, hard! Hugs to you------the things I said? Nah, it did not come easy, did not happen easy, and might not be the things that will work for you..... In any event, my thoughts and prayers are with you-------and your husband, and kt and wm. One family members illness DOES affect everyone and it is hard for everyone and hard on everyone. Many gentle hugs. and you always are in my prayers. [/QUOTE]
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