The Family Caregiver Forum
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Welcome to the NFCA's Family Caregiver Forum - a place where all family caregivers can post questions, receive support and communicate with others.
IWillPersevere
Posts: 2
Joined: May 2010
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Thursday May 20, 2010 4:28 PM
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Hi,
I'm new to this site, I just joined today. I'm in my mid fourties and have a chronically ill husband. He has thyroid, endocrine issues, chronic fatique, fibrmyalgia and other issues related to a head injury. He works but that's the most functional thing he does. He's not real engaged in anything else. He works and takes care of himself.
I have a young son. I'm trying to keep everything as normal appearing for him as possible but it's draining. I also work full-time. I feel like I'm a single parent and a caregiver but no longer a spouse. We have no family close by and I feel like I have drained my friends. It's very draining emotionally for me, lonely and frustrating. I cope by an ocassional shopping trip, reading, journaling. I should be getting more sleep, exercising and eating better but I'm not making it a priority.
I don't know anyone else my age who is in this situation - dealing with a spouse with health issues and raising a child.
Anyone else out there in this situation?
Jan
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Jan Clark
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rzxq2y
Posts: 1612
Joined: Jun 2009
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Thursday May 20, 2010 9:31 PM
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Hi, Jan,
I do not fit whom you are looking for, but I want to welcome you to the forum. Yes, we have quite a number of caregivers here caring for a husband and raising young children. Not everyone log on regularly, but I am quite sure that they will find you or you will find them when you read some of the other posts.
I am already retired and take care of my wife 24x7. Regardless of the situation, having a spouse with health issues does change our lives forever. We will have a new routine and new life style, although not as bright as before. Please do take care of yourself, which has to be a priority. Especially make sure that you get enough sleep. Exercises and eating properly is very important and helpful. You can leave some of the things not done, just make sure that you need to stay healthy or else you cannot care for your son and your husband.
As your ID says, you will persevere!
Best Regards,
Min-Shih
Edited: Thursday May 20, 2010 at 9:33 PM by rzxq2y
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ksmith
Posts: 14
Joined: May 2010
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Tuesday May 25, 2010 10:54 AM
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Hi Jan
I am also new here and in the same boat, work full time, have two young sons and do everything for them. My husband had a stroke in February and is getting better slowly but surely- but still can't do many things to help me out. He is frustrated, i am frustrated and it just leads to an unfriendly environment for our sons. He has good days and bad days, and on those days I stay away from him. He is very nasty, and takes everything out on me. You are right, no one understands the situation that we are in, they try to help, but they don't know what its like, and hopefully never will. I know its hard but try to MAKE time for yourself, even if its only 1/2 hour every couple days. I try to get to the gym 3 days a week to relieve some stress, and it works (of course i have to take the kids with me to the kids club) but it is worth it. You have to take care of yourself to be there for your son. Hang in there and continue vent on the board here, it does help, we all are in this together!!! 
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rzxq2y
Posts: 1612
Joined: Jun 2009
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Tuesday May 25, 2010 11:41 AM
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Hi, ksmith,
I am so glad that you are trying to go to sym 3 times a week, good for you! I would guess that the hard part is to get your husband to do exercises, which is so important for his recovery. My wife's condition is degenrative, but it is critical for her to exercises every day to keep whatever mobility she has for as long as possible. Since it is hard for her to move around, it can be challenging at times to get her to exercise. In a sense, she and are for fighting a losing battle, but we want to lose as slowly as possible.
I am also glad that you find the forum helpful. I found the forum about a year ago, and now it is a regular part of life. Please stay in touch with us.
Best Regards,
Min-Shih
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lchanin
Posts: 4
Joined: May 2010
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Saturday May 29, 2010 10:47 PM
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Hi Jan,
You're not alone. I am a young 53. My wife is 48. She has advanced multiple sclerosis and is unable to walk. She has almost no use of her legs, almost no use of her right hand and limited use of her left hand. She tries to do as much as she can herself, but needs my help for many things, particularly in the bathroom and getting to bed, adjusting in bed, etc. We have two daughters, 18 and 15. My wife had an accident a few years ago where she fell out of her electric scooter and banged her head hard. She suffered from severe virtigo and said the fall made her condition ten times worse. She became incredibly sensitive and required extraordinary gentleness in handling. She would sleep on 6-8 pillows and it took 1-2 hours to get her settled in bed. She continually accused me of rough handling. We would end up having horrific fights in the middle of all this, because inevitably no matter how much care I gave it did not seem like enough. She would lace into me and I would become defensive and things would spiral out of control. This went on for more than a year. During this period my older daughter, who is incredibly smart, started having emotional problems and demanded to be home schooled. She was incredibly insistent and demanding, and after a while she wore our resistance down and we agreed. But then she broke all the pacts we made about course work she would do, and there was an extraordinary amount of stress around her schooling situation. With our strong encouragement she tested into another gifted program for 11th grade. But she only lasted a few months where again she was saying she couldn't deal with it. Her teachers were so understanding. They agreed to let come into school once a week and do all her course work at home. Even that didn't work. When she was saddled with deadlines on papers, she took an overdose of Tylenol. She said she knew it wouln't kill her. She looked it up on the internet, and found that if she got straight to the hospital she would be okay. She spent a week in a psych ward. Then we got her into a school for kids with emotional problems and drug problems. At about that time she was busted for heroin. We got her off the legal hook with the promise that she was in a full time program for kids with drug problems with mandatory drug testing. Despite this she continued to use and would sometimes not come home at all at night. It was an absolute nightmare. We finally got her into a rehab program last summer for one month. Then we sent her to a "wilderness" program for 3 months. Now she is at a center for young adults with drug and alcohol problems, and she is doing well. She is taking courses at a community college and seems receptive to the precepts of the program. She is a work in progress but we are hopeful, even though the situation has basically bankrupted us. Through the course of this my wife began to withdraw emotionally from me. We have not been intimate for a good five years, and before that there was little of it. Oh yeah, she had an affair with her old fiance about five years ago, and apologized profusely when I confronted her with the evidence; and discontinued the relationship. She would invite my younger daughter out to the movies, but not me, on a regular basis. When I told her I wanted to go out to dinner with her or do ANYTHING, she told me not to pressure her, she was going through a hard time. When I told her we need to discuss the situation between us, she said she is on the brink of a nervous breakdown, between her accident and my older daughter's hellish episodes, she couldn't take anything more. Oh yeah, and she was paralyzed with fear that her left hand, her only somewhat good hand, was deteriorating; and she was facing the possibility of taking some very nasty drugs, which she was very reluctant to do. I laid off. I would come home and find her crying oftentimes, or at other times she would spontaneously start crying. Throughout this, she continued to pay the bills and manage the household, and attend to our younger daughter as best she could. She started saying she could no longer live in our apartment, she had to get out. There were too many horrific memories. Plus she spends 99.9 percent of her time in the apartment, and that in itself is a reason to move. I said I would consider moving, but as a lawyer, I can't move far from New York, where I am admitted to practice. Not to mention I work near where I live, which makes it easy for me to come home if my wife needs held in the middle of the day, although it's not always easy to pull myself from a demanding job. She broke the news that she was planning to take a break from home for about a month, but she didn't tell me where she was going. I agreed to it, since she seemed to need it so much, and to be honest I was looking forward to a break. I assumed she would have to go to a nursing home, because she absolutely needs help with the bathroom (including catheterization) and getting to and from bed and adjusting in bed in the night. She finallly told me where she was going on her "sabbatical," which is what we started calling it. England. She had met these people on line and had maintained a relationship with them for a year, never once sharing any of it with me, and they had agreed to care for her for a month. She left a few weeks ago and it has been a vacation for me. I get up in the morning, and I have nothing to do but walk the dogs and get ready for work. I get home from work and I don't have to spend an hour or so helping her in the bathroom and to bed. I actually took my younger daughter camping for the first time in her life, because I was never able to get away before. The surprising thing is my wife has become far more affectionate over the phone during her sabbatical.
She calls me every day and we have very nice conversations. We are getting along better than we have for years. She actually told me she has come to realize that no one can give the quality of care I have provided to her. She has started to work on a novel, which she had been working on for a couple of years and she sounds in a much better frame of mind. She's decided to extend her stay for another month, and I am only to glad to oblige her. Meanwhile, I find myself alone a good deal of the time, which gets back to your issue of isolation. I don't have very close friends, and don't always want to hang with family, even if they are available. My older daughter lives far away now and my younger daughter is pretty busy with her own social life, although we do quite a bit together. I find myself really wanting to go out with a woman, even just to go to a movie or dinner, or the park. I even went to an al anon meeting, with the thought that maybe I might meet someone, which of course didn't happen. As you can see, you're not the only one who is dealing with issues of this kind. My heart goes out to you. I wonder if anyone can relate to my story.
Les
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lchanin
Posts: 4
Joined: May 2010
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Saturday May 29, 2010 10:50 PM
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Hi Jan,
You're not alone. I am a young 53. My wife is 48. She is beautiful, but has advanced multiple sclerosis and is unable to walk. She has almost no use of her legs, almost no use of her right hand and limited use of her left hand. She tries to do as much as she can herself, but needs my help with many things, particularly in the bathroom and getting to bed, adjusting in bed, etc. We have two daughters, 18 and 15. My wife had an accident a few years ago where she fell out of her electric scooter and banged her head hard. She suffered from severe virtigo and said the fall made her condition ten times worse. She became incredibly sensitive and required extraordinary gentleness in handling. She would sleep on 6-8 pillows and it took 1-2 hours to get her settled in bed. She continually accused me of rough handling. We would end up having horrific fights in the middle of all this, because inevitably no matter how much care I gave it did not seem like enough. She would lace into me and I would become defensive and things would spiral out of control. This went on for more than a year. During this period my older daughter, who is incredibly smart, started having emotional problems and demanded to be home schooled. She was incredibly insistent and demanding, and after a while she wore our resistance down and we agreed. But then she broke all the pacts we made about course work she would do, and there was an extraordinary amount of stress around her schooling situation. With our strong encouragement she tested into another gifted program for 11th grade. But she only lasted a few months where again she was saying she couldn't deal with it. Her teachers were so understanding. They agreed to let come into school once a week and do all her course work at home. Even that didn't work. When she was saddled with deadlines on papers, she took an overdose of Tylenol. She said she knew it wouln't kill her. She looked it up on the internet, and found that if she got straight to the hospital she would be okay. She spent a week in a psych ward. Then we got her into a school for kids with emotional problems and drug problems. At about that time she was busted for heroin. We got her off the legal hook with the promise that she was in a full time program for kids with drug problems with mandatory drug testing. Despite this she continued to use and would sometimes not come home at all at night. It was an absolute nightmare. We finally got her into a rehab program last summer for one month. Then we sent her to a "wilderness" program for 3 months. Now she is at a center for young adults with drug and alcohol problems, and she is doing well. She is taking courses at a community college and seems receptive to the precepts of the program. She is a work in progress but we are hopeful, even though the situation has basically bankrupted us. Through the course of this my wife began to withdraw emotionally from me. We have not been intimate for a good five years, and before that there was little of it. Oh yeah, she had an affair with her old fiance about five years ago, and apologized profusely when I confronted her with the evidence; and discontinued the relationship. She would invite my younger daughter out to the movies, but not me, on a regular basis. When I told her I wanted to go out to dinner with her or do ANYTHING, she told me not to pressure her, she was going through a hard time. When I told her we need to discuss the situation between us, she said she is on the brink of a nervous breakdown, between her accident and my older daughter's hellish episodes, she couldn't take anything more. Oh yeah, and she was paralyzed with fear that her left hand, her only somewhat good hand, was deteriorating; and she was facing the possibility of taking some very nasty drugs, which she was very reluctant to do. I laid off. I would come home and find her crying oftentimes, or at other times she would spontaneously start crying. Throughout this, she continued to pay the bills and manage the household, and attend to our younger daughter as best she could. She started saying she could no longer live in our apartment, she had to get out. There were too many horrific memories. Plus she spends 99.9 percent of her time in the apartment, and that in itself is a reason to move. I said I would consider moving, but as a lawyer, I can't move far from New York, where I am admitted to practice. Not to mention I work near where I live, which makes it easy for me to come home if my wife needs held in the middle of the day, although it's not always easy to pull myself from a demanding job. She broke the news that she was planning to take a break from home for about a month, but she didn't tell me where she was going. I agreed to it, since she seemed to need it so much, and to be honest I was looking forward to a break. I assumed she would have to go to a nursing home, because she absolutely needs help with the bathroom (including catheterization) and getting to and from bed and adjusting in bed in the night. She finallly told me where she was going on her "sabbatical," which is what we started calling it. England. She had met these people on line and had maintained a relationship with them for a year, never once sharing any of it with me, and they had agreed to care for her for a month. She left a few weeks ago and it has been a vacation for me. I get up in the morning, and I have nothing to do but walk the dogs and get ready for work. I get home from work and I don't have to spend an hour or so helping her in the bathroom and to bed. I actually took my younger daughter camping for the first time in her life, because I was never able to get away before. The surprising thing is my wife has become far more affectionate over the phone during her sabbatical.
She calls me every day and we have very nice conversations. We are getting along better than we have for years. She actually told me she has come to realize that no one can give the quality of care I have provided to her. She has started to work on a novel, which she had been working on for a couple of years and she sounds in a much better frame of mind. She's decided to extend her stay for another month, and I am only to glad to oblige her. Meanwhile, I find myself alone a good deal of the time, which gets back to your issue of isolation. I don't have very close friends, and don't always want to hang with family, even if they are available. My older daughter lives far away now and my younger daughter is pretty busy with her own social life, although we do quite a bit together. I find myself really wanting to go out with a woman, even just to go to a movie or dinner, or the park. I even went to an al anon meeting, with the thought that maybe I might meet someone, which of course didn't happen. As you can see, you're not the only one who is dealing with issues of this kind. My heart goes out to you. I wonder if anyone can relate to my story.
Text
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lchanin
Posts: 4
Joined: May 2010
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Saturday May 29, 2010 10:51 PM
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Hi Jan,
You're not alone. I am a young 53. My wife is 48. She has advanced multiple sclerosis and is unable to walk. She has almost no use of her legs, almost no use of her right hand and limited use of her left hand. She tries to do as much as she can herself, but needs my help for many things, particularly in the bathroom and getting to bed, adjusting in bed, etc. We have two daughters, 18 and 15. My wife had an accident a few years ago where she fell out of her electric scooter and banged her head hard. She suffered from severe virtigo and said the fall made her condition ten times worse. She became incredibly sensitive and required extraordinary gentleness in handling. She would sleep on 6-8 pillows and it took 1-2 hours to get her settled in bed. She continually accused me of rough handling. We would end up having horrific fights in the middle of all this, because inevitably no matter how much care I gave it did not seem like enough. She would lace into me and I would become defensive and things would spiral out of control. This went on for more than a year. During this period my older daughter, who is incredibly smart, started having emotional problems and demanded to be home schooled. She was incredibly insistent and demanding, and after a while she wore our resistance down and we agreed. But then she broke all the pacts we made about course work she would do, and there was an extraordinary amount of stress around her schooling situation. With our strong encouragement she tested into another gifted program for 11th grade. But she only lasted a few months where again she was saying she couldn't deal with it. Her teachers were so understanding. They agreed to let come into school once a week and do all her course work at home. Even that didn't work. When she was saddled with deadlines on papers, she took an overdose of Tylenol. She said she knew it wouln't kill her. She looked it up on the internet, and found that if she got straight to the hospital she would be okay. She spent a week in a psych ward. Then we got her into a school for kids with emotional problems and drug problems. At about that time she was busted for heroin. We got her off the legal hook with the promise that she was in a full time program for kids with drug problems with mandatory drug testing. Despite this she continued to use and would sometimes not come home at all at night. It was an absolute nightmare. We finally got her into a rehab program last summer for one month. Then we sent her to a "wilderness" program for 3 months. Now she is at a center for young adults with drug and alcohol problems, and she is doing well. She is taking courses at a community college and seems receptive to the precepts of the program. She is a work in progress but we are hopeful, even though the situation has basically bankrupted us. Through the course of this my wife began to withdraw emotionally from me. We have not been intimate for a good five years, and before that there was little of it. Oh yeah, she had an affair with her old fiance about five years ago, and apologized profusely when I confronted her with the evidence; and discontinued the relationship. She would invite my younger daughter out to the movies, but not me, on a regular basis. When I told her I wanted to go out to dinner with her or do ANYTHING, she told me not to pressure her, she was going through a hard time. When I told her we need to discuss the situation between us, she said she is on the brink of a nervous breakdown, between her accident and my older daughter's hellish episodes, she couldn't take anything more. Oh yeah, and she was paralyzed with fear that her left hand, her only somewhat good hand, was deteriorating; and she was facing the possibility of taking some very nasty drugs, which she was very reluctant to do. I laid off. I would come home and find her crying oftentimes, or at other times she would spontaneously start crying. Throughout this, she continued to pay the bills and manage the household, and attend to our younger daughter as best she could. She started saying she could no longer live in our apartment, she had to get out. There were too many horrific memories. Plus she spends 99.9 percent of her time in the apartment, and that in itself is a reason to move. I said I would consider moving, but as a lawyer, I can't move far from New York, where I am admitted to practice. Not to mention I work near where I live, which makes it easy for me to come home if my wife needs held in the middle of the day, although it's not always easy to pull myself from a demanding job. She broke the news that she was planning to take a break from home for about a month, but she didn't tell me where she was going. I agreed to it, since she seemed to need it so much, and to be honest I was looking forward to a break. I assumed she would have to go to a nursing home, because she absolutely needs help with the bathroom (including catheterization) and getting to and from bed and adjusting in bed in the night. She finallly told me where she was going on her "sabbatical," which is what we started calling it. England. She had met these people on line and had maintained a relationship with them for a year, never once sharing any of it with me, and they had agreed to care for her for a month. She left a few weeks ago and it has been a vacation for me. I get up in the morning, and I have nothing to do but walk the dogs and get ready for work. I get home from work and I don't have to spend an hour or so helping her in the bathroom and to bed. I actually took my younger daughter camping for the first time in her life, because I was never able to get away before. The surprising thing is my wife has become far more affectionate over the phone during her sabbatical.
She calls me every day and we have very nice conversations. We are getting along better than we have for years. She actually told me she has come to realize that no one can give the quality of care I have provided to her. She has started to work on a novel, which she had been working on for a couple of years and she sounds in a much better frame of mind. She's decided to extend her stay for another month, and I am only to glad to oblige her. Meanwhile, I find myself alone a good deal of the time, which gets back to your issue of isolation. I don't have very close friends, and don't always want to hang with family, even if they are available. My older daughter lives far away now and my younger daughter is pretty busy with her own social life, although we do quite a bit together. I find myself really wanting to go out with a woman, even just to go to a movie or dinner, or the park. I even went to an al anon meeting, with the thought that maybe I might meet someone, which of course didn't happen. As you can see, you're not the only one who is dealing with issues of this kind. My heart goes out to you. I wonder if anyone can relate to my story.
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Star1
Posts: 301
Joined: Sep 2008
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Sunday May 30, 2010 8:32 AM
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Les, welcome! Don't worry about what anyone else might think of you. When you come here you can 'tell all' if you want to.
Min-Shih, so far the kidney failure thing is on hold. David had an infection [UTI] and is taking antibiotics for it. His appointment with the kidney doctor is on June 18, so we will maybe find out something at that time. His sister died at 52 from kidney failure and his 59 year old brother is in renal failure right now. David's brother, Tom, has a friend who calls David "the indestructable man!" I don't know about that, but, he has survived so many things that should have killed him. He had typhoid fever as a child, as an adult he had rabies and survived, he has broken his neck twice, he has been written up in a medical journal because he survived the broken neck at C-2 which is 99% fatal [he never even became crippled from it!] He has had pneumonia more times than I can count, twice he was supposed to die from it. He was in hospice care for a year. When hospice told me it was over because he was only breathing sporatically and was so near death you could smell it, he pulled through. He should have died at this last hospitalization. He had pancreatitis, a gallbladder attack, a bacterial infection in his bowels where he was gushing blood, and his blood pressure was sky high. He tells me that he is going to pass away peacefully in his sleep!! He could very well be right.
The problem with all of this is the toll it takes on me. It is an emotional roller coaster, over and over with him. Just when I think this will be over soon, he pulls through again and everyone does the oohs and aahs about how resiliant he is! It's so hard to keep going through this. Pam.
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lchanin
Posts: 4
Joined: May 2010
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Monday May 31, 2010 3:54 AM
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Thank you Gaby, Pam and Carolina I appreciate your kind, empathic words- the words of people who "know," who have paid their "dues." Carolina, I hear your silent scream. I wish you a full life in every sense of the word, with all the joy God put you in the world to experience, although I' am not a religious man. Dang the relatives! As a therapist, you know there is an id, which should not be totally denied, or life loses all meaning.
In many ways you and I are in the same place, although we arrived there in different ways. Unlike you, I knew what I was getting into, or at least I had a clue, so i guess you could say I "asked for it." In many ways, our marital problems stem from my unwillingness to totally commit to the relationship. Although I said "I do," I never gave myself over to my wife 100%. I could not deal with all the pain she has to endure on a daily basis; the incredible sadness of losing her physical abilities in so many ways; all the disappointments of her life, not to mention a lot of actual physical suffering. She is a very proud woman and has been forced into a dependent role, which she loathes. Sometimes she vents her anger at me. (I know this was different for you and your husband, Carolina, since he was not ill when you married; and I assume you fully emotionally gave yourselves over to one another.) She really wanted to get married and I had a very hard time saying no, since I did love her. She's a beautiful woman. I finally told her I would agree to marry her if she would agree to have kids. I thought that even if my marriage is not ideal, I would at least have kids, which I have always very deeply wanted. I was hoping a cure might be found before she deteriorated too badly. Unfortunately, that has not occurred. Part of me was hoping she would reject my ultimatum, then at least it would be her who was saying no. I guess you could say she called my bluff, and we got married. We had a daughter right away. My wife didn't want to waste any time, knowing her condition was deteriorating. I became totally immersed in the children's lives, particularly my older daughter. My joy and sense of fulfillment was largely through them. My relationship with my wife mainly revolved around the kids. We often disagreed about how to deal with them on a day-to-day basis, which created a lot of friction between us. We sort of drifted apart over the years. Although we still continued to love one another, we had few interests in common. After my wife's accident and the saga with my older daughter, things deteriorated to the point that we barely related at all, except while I was physically assisting her or about business matters or the kids. She withdrew all forms of affection. Maybe when she gets back from England, things will be different, as Gaby suggested. Part of me hopes so, and part of me doesn't.
For years, my older daughter has been urging me to "get a life." She has sensed that I feel very trapped and unfulfilled in many ways. She and I were (and continue to be) very close, even during her period of drug use. I foolishly believed her when she said she did not have a serious problem. Since all of her difficulties and leaving home last July, I lost my identity in many ways. I lost my hope, which she had embodied. I have come to realize that I can no longer depend on her for my own identity, but must find fulfillment in myself, so she and the rest of my family can depend on me, rather than the other way around! About a year ago, I started working on a writing project, which has given me a lot of satisfaction, although it has been a bumpy road. Although I am still struggling with the desire for a "normal" relationship, which I sometimes dream about, I am trying to develop a purpose. The writing goal has helped fill that void, at least partially; and has given me some measure of hope.
I hope you can find fulfillment within yourself, not only for your sake, but for your son, as well as your husband. My advice, for what it's worth, is to do the best you can for your husband, but don't totally sacrifice yourself! If you have lost all hope, which I basically had, you've got to try to get some back. My very best to you and everyone else out there who is grappling with these ridiculously impossible problems.
Les
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ksmith
Posts: 14
Joined: May 2010
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Wednesday June 02, 2010 10:11 AM
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Carolina I know exactly how you feel. I am 39 years old, my husband is 51. He suffered a stroke on Feb 5th and was in the hospital/rehab for 2 months, our lives have been turned upside down. We have two young boys 4 and 7 and they are having a hard time understanding why daddy can't do the things he used to. Thankfully one day he may be able to he is getting better everyday and luckily there was no paralysis. He has trouble with balance, swallowing and stamina. They are saying hopefully he will be back to 90-95% himself with a year under his belt, but we have to wait and see. We have been having some behavior issues with the 4 year old, acting out, hitting and being nasty to his dad. He is mad at his dad for being away for so long. My son would see his dad like twice a week in the rehab, but it wasnt the same as having him home, and now that he is home he is nasty to him. It doesnt help that my husband has a very short fuse and is constantly yelling at the boys. I try to keep them out of the house as much as possible. But your right no one knows what its like to be in our shoes. You can only do the best that you can do, and don't let anyone tell you different. Its hard for me when people ask how he is to be polite and say what they want to hear with a smile, when I am angry, frustrated and ready to cry at the drop of a hat. But we do what we have to to get by. hang in there, i just joined the forum last week and it helps with my frustration, and to no that we are not alone
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