Aa
Caregiver Burnout
Ok, before I get a lot of "what are YOU whining, you aren't sick!" comments, which I probably fully deserve....I am just coming here to unload a little. No doubt tomorrow the sun will shine and I will feel better, but on Saturdays (and truthtfully, Sundays, often also Mondays, now dragging into Tuesdays......) hubby is so sick on this TX. He is genotype 1 a or b (doesn't know, doesn't care, doesn't really matter) post liver transtplant (1 year on 9/11/07) whose HepC came back within a few months of the liver transplant. (He had cancer due to the HCV.) We had about 9 months of waiting for the transplant, then the transplant, one nasty-bad post op infection (hospital borne, put him back in the hosp for longer than the transplant stay!!) then the slow recovery. Back to work at 90 MPH as per his usual mode in January, complete with travel, but by April the news came that the virus was back. He had a biopsy, jumped thru all the hoops and being the take charge guy he is decided to be very aggressive in TX while the liver damage was minute. Began TX July Friday the 13th. (Yes, I am horribly supersititous). Complete downhill slide from there. He is so sick now he cannot get out of bed on Sat. or Sun. Maybe by Monday, but weeks like last week are not uncommon--only worked 2 days, the rest were spent lying on his side in bed with his laptop next to him. He finally went on AD's because he began randomly crying and that scared him, and his hep doc said if he got worse he'd be taken off, so he's on an AD. Hasn't has much problem with rashes, just an eyelid rash that makes him insane (I know because he recites to me, everyday, every single symptom, ache, pain, itch, weird thought or imagined symptom. Constantly. He will not eat if I do not fix him something. He will take his meds, but anything other than the immunosuppressants and the Riba, I need to remind him, in fact he likes me to give them to him. I even have to put the balm on his eyelids, he can't or won't do it himself.
He is barely able to work, but wants to because it gives him the feeling of normalcy, and honestly if he lays in bed for 31 more weeks, I think we'll both be crazy. He is also terrified if being fired, so has told no one at work what he is going through. They all just assume he's rejecting the liver (which actaully is in great shape).
Really, I know I am seriously just whining here. I am soooooo tired, We have the TV in our bedroom and it's on 24/7 when he's sick. I cannot sleep with it on and so as soon as I fall asleep he pops it back on (like I don't notice!)-I'll ask him please to turn it off and it's always "I want to watch this movie"...so mostly I sleep on the downstairs couch lately.
He only complains to me--everyone else in the family thinks he amazing, brave strong and really manning up to the task. It makes me so mad. I get the crabby, irritable, nit-picky complainer and they see dad/brother as some kind of super hero. I cry a ton, in the shower so nobody hears, If I say a word about him being down I hear about it from my kids. He didn't tell his mother what's going on so she calls constantly and tells me I'm not taking care of him. I took a part time job to pay for his drugs so now I have all the burden of the household (he does not even put a wet towel up to dry, nor a dish in the DW) and I am so tired and frustrated. I think only people who are going thru this can possibly understand what it is like to care for someone 24/7 now going on 2 years...almost non-stop..can do to you. I don't even know if I love him anymore. I feel like I am sticking this out because I have no choice, and even though I am doing this and caring for him as best I can, it is never good enough. People keep saying "Take time for yourself" and I don't even know what that means!! It's all about him, has been for so long and will be for so long, still.
Sorry if I have offended anyone. It's not my intention to do so. I'm just, well, dangling on the end of a rapidly fraying rope. 2 years ago at this time he got his cancer DX and our lives came to as grinding halt--nothing has been the same since. If normalcy hit me in the head I wouldn't recognize it.
If you're going to crucify me because I'm a selfish witch, save your typing fingers, I know I am. I am just blowing off steam. Still and all, there must be others out there who feel like I do, or maybe some of you on TX will see yourselves in my hubby (who I think used to be nice guy) and begin to see that this hell we call Interferon is about the whole family, not just you.
He is barely able to work, but wants to because it gives him the feeling of normalcy, and honestly if he lays in bed for 31 more weeks, I think we'll both be crazy. He is also terrified if being fired, so has told no one at work what he is going through. They all just assume he's rejecting the liver (which actaully is in great shape).
Really, I know I am seriously just whining here. I am soooooo tired, We have the TV in our bedroom and it's on 24/7 when he's sick. I cannot sleep with it on and so as soon as I fall asleep he pops it back on (like I don't notice!)-I'll ask him please to turn it off and it's always "I want to watch this movie"...so mostly I sleep on the downstairs couch lately.
He only complains to me--everyone else in the family thinks he amazing, brave strong and really manning up to the task. It makes me so mad. I get the crabby, irritable, nit-picky complainer and they see dad/brother as some kind of super hero. I cry a ton, in the shower so nobody hears, If I say a word about him being down I hear about it from my kids. He didn't tell his mother what's going on so she calls constantly and tells me I'm not taking care of him. I took a part time job to pay for his drugs so now I have all the burden of the household (he does not even put a wet towel up to dry, nor a dish in the DW) and I am so tired and frustrated. I think only people who are going thru this can possibly understand what it is like to care for someone 24/7 now going on 2 years...almost non-stop..can do to you. I don't even know if I love him anymore. I feel like I am sticking this out because I have no choice, and even though I am doing this and caring for him as best I can, it is never good enough. People keep saying "Take time for yourself" and I don't even know what that means!! It's all about him, has been for so long and will be for so long, still.
Sorry if I have offended anyone. It's not my intention to do so. I'm just, well, dangling on the end of a rapidly fraying rope. 2 years ago at this time he got his cancer DX and our lives came to as grinding halt--nothing has been the same since. If normalcy hit me in the head I wouldn't recognize it.
If you're going to crucify me because I'm a selfish witch, save your typing fingers, I know I am. I am just blowing off steam. Still and all, there must be others out there who feel like I do, or maybe some of you on TX will see yourselves in my hubby (who I think used to be nice guy) and begin to see that this hell we call Interferon is about the whole family, not just you.
Good points, all around. It HAS taken this illness, in all it's forms to make me open my eyes and see that I have created this "pita" so to speak. He is wonderful provider, and from his background and age (almost dinosaur era, it seems) being the provider was the only chore necessary to being the man of the house. And for years and years, because of the constant travel, it worked. Kids had chores, I ran the joint, when daddy came home it was party time. Then he'd leave again. All his down time was spent pursuing his personal interests, golfing, mountaineering, rock climbing...if the kids or I wanted to go, we were welcome, but it was hit & miss. Counseling has worked on all these issues and still will. Now he hasn't got the strength to do any of these things and fears he never will again. I know he will--but then I went thru 5 tough pregnancies and learned a lot of patience with my body and my inability to control what went on.
He's actually been fabulously lucky, all things considered, but he sure doesn't think so. This alone makes me angry. I want to see some gratitude (not towards ME but towards God who gives him such tender mercies even in his pain)--I know when you don't feel well it is hard to be anything but self centered. And yes, maybe this trip will make him realize he's gotten way too dependent on me. I am going to pick up more hours next week and so less time for him. I don't have to work more, I want hubby to do more for himself, and the only way to get him to do it is by force, almost.
LOL--Hubby's doc once said "You are really an intense Type A person"..and hubby immediately said "I AM NOT!" thereby sealing the DX pretty fast.Doc & I were laughing so hard & hubby was clueless. Hubby said "IS that IN MY CHART???" Doc said "Yep." reminded me of that Seinfeld episode w/Elaine.....It happened 6 months ago and I'm still chuckling over it.
Merrybe--I hope things go well for you--I read a lot of posts and see your kind words to others. You are a trooper--that's for sure. I too have white gunk in my brain, which appears to be nothing, so I am grateful, but for a while docs told me I was throwing clots. Seriously, I have a love/hate thing for doctors. 2 of of my kids are, so I Iove them, but the rest.....maybe not so much.
He's actually been fabulously lucky, all things considered, but he sure doesn't think so. This alone makes me angry. I want to see some gratitude (not towards ME but towards God who gives him such tender mercies even in his pain)--I know when you don't feel well it is hard to be anything but self centered. And yes, maybe this trip will make him realize he's gotten way too dependent on me. I am going to pick up more hours next week and so less time for him. I don't have to work more, I want hubby to do more for himself, and the only way to get him to do it is by force, almost.
LOL--Hubby's doc once said "You are really an intense Type A person"..and hubby immediately said "I AM NOT!" thereby sealing the DX pretty fast.Doc & I were laughing so hard & hubby was clueless. Hubby said "IS that IN MY CHART???" Doc said "Yep." reminded me of that Seinfeld episode w/Elaine.....It happened 6 months ago and I'm still chuckling over it.
Merrybe--I hope things go well for you--I read a lot of posts and see your kind words to others. You are a trooper--that's for sure. I too have white gunk in my brain, which appears to be nothing, so I am grateful, but for a while docs told me I was throwing clots. Seriously, I have a love/hate thing for doctors. 2 of of my kids are, so I Iove them, but the rest.....maybe not so much.
I'll be greatly surprised if 10 days doen't make someone wake up and smell some coffee.
he reminds me of a couple type A's that really are as clueless as the pres. of Iran and just about the kind one could go nuclear on. and yet....some folks think that guys together too...go figure....
I don't think it's the same for everyone, but there are times, days, where I've lost track of what I was doing so many times it's frightening. It is really like hep c induced altzheimer's....don't know if this is hep brain fog everyone speaks of, or the 13 lumps of white gunk they say are in my brain...but it not fun getting so easily lost doing simple things.....and it's still not fun when you are on the receiving end of someone regressing as this is happening.
I agree that he's a pita...and that he may be a "professional" to a lot of people, but does not know how to love.
even a little thank you goes a long way with people.
do you think as people get sick and age their faults come to the surface?
Do you think maybe he thinks you like it cause you are a nurse?? c
an you make a list each day for your daughter...like until you have a job, you will do these 12 things before I get home, or eat from a cold can of beans cause their will be no pizza money forthcoming??? Since she thinks it's such an easy job, give her all the housechores for the next 10 days....
I think someone was onto something with counseling, you need to find ways to take your power back, even if in increments.
like put a note on the hamper if you have to...
this is a hamper, people who want their laundry done can use it, or forget it.......
and then kick his clothes in a heap until he runs out.
I can't bend over and pick things up somedays, but still manage to foot them into a hamper if they do fall...and wash them myself on good weeks...
not to sound like a broken therapist record here, but your husband doesn't sound like he wants to be your helpmate, which is what marriage is about.
since you are a nurse, you've seen true helplessness....
I think that's why this is bothering you, because you are describing mostly denial and laziness, or at least it appears that way. I did find out my pituitary had stopped working, and brain spots, but not ever hepper has this going on....then again, not many get tested to see what the disease is doing elsewhere...
he reminds me of a couple type A's that really are as clueless as the pres. of Iran and just about the kind one could go nuclear on. and yet....some folks think that guys together too...go figure....
I don't think it's the same for everyone, but there are times, days, where I've lost track of what I was doing so many times it's frightening. It is really like hep c induced altzheimer's....don't know if this is hep brain fog everyone speaks of, or the 13 lumps of white gunk they say are in my brain...but it not fun getting so easily lost doing simple things.....and it's still not fun when you are on the receiving end of someone regressing as this is happening.
I agree that he's a pita...and that he may be a "professional" to a lot of people, but does not know how to love.
even a little thank you goes a long way with people.
do you think as people get sick and age their faults come to the surface?
Do you think maybe he thinks you like it cause you are a nurse?? c
an you make a list each day for your daughter...like until you have a job, you will do these 12 things before I get home, or eat from a cold can of beans cause their will be no pizza money forthcoming??? Since she thinks it's such an easy job, give her all the housechores for the next 10 days....
I think someone was onto something with counseling, you need to find ways to take your power back, even if in increments.
like put a note on the hamper if you have to...
this is a hamper, people who want their laundry done can use it, or forget it.......
and then kick his clothes in a heap until he runs out.
I can't bend over and pick things up somedays, but still manage to foot them into a hamper if they do fall...and wash them myself on good weeks...
not to sound like a broken therapist record here, but your husband doesn't sound like he wants to be your helpmate, which is what marriage is about.
since you are a nurse, you've seen true helplessness....
I think that's why this is bothering you, because you are describing mostly denial and laziness, or at least it appears that way. I did find out my pituitary had stopped working, and brain spots, but not ever hepper has this going on....then again, not many get tested to see what the disease is doing elsewhere...
I am laughing...partly at some of the comments, but in big part because I get that huge bed all to myself tonight and for 10 more nights. You bet I am going to spoil myself.
Alagirl--you are right--we had issues and were in marriage counseling prior to TX. Staying in counseling is the only thing keeping us together. I have told him, in no uncertain terms, that I will NOT divorce him while he's on TX (because, in all fairness, he is not himself) but that I will not stay with him if he is unbearable. . I have left him once, for two nights. Went away with my sis. Cried for two solid days and felt a ton better. He IS a big baby and knows it, but I am partially to blame as I spoil him rotten and always have. Now that I have returned to work part-time, it's been a real strain on our marriage as I simply do not do everything as per the usual. He resents the heck out of my job, but I had no choice, these drugs are powerfully expensive and we still are paying for his TRANSPLANT for crying out loud. (Over 50K) I love my job, turns out, which is a blessing becasue it is very physically exhausting (nursing, believe it or not).
Hubby traveled extensivley all thru 31 years of marriage, so I just did everything.House, Yard, Bills, Taxes, Car maintenance, raised 5 kids. He just was never home. Trying to get him to step up and do something is like beating a dead horse..he just doesn't "get it" that he can take his own vehicle to have the oil changed. I guess he thought the oil fairy did it. Or put dirty clothes in the hamper. Or a dirty dish in the DW instead of on the nightstand. Very, very slowly is he coming around to the realization that although, yes, he worked and supported the family financially all these years, that is all he did. I did the rest. Now I have to shoulder the burden of all I have always done plus bring in a certain amount of income, too. I think the light is beginning to come on.
I know I'm real whiny on this post, and I think it's becasue I feel free to express what I cannot say to him but wish I could. I look at that emaciated, sick, sick man and my heart bleeds. We have been thru hell the last 2 years and I, for one, am sick of it. He's had countless mini-vacations with friends, family, etc, and I have gone nowhere, because I have to work and run the home. This is an issue for counseling. I know. It will be addressed soon.
Time for bed for this old gal--BTW, he didn't even take his bag balm...nobody to put it on his tender eyelids.
Alagirl--you are right--we had issues and were in marriage counseling prior to TX. Staying in counseling is the only thing keeping us together. I have told him, in no uncertain terms, that I will NOT divorce him while he's on TX (because, in all fairness, he is not himself) but that I will not stay with him if he is unbearable. . I have left him once, for two nights. Went away with my sis. Cried for two solid days and felt a ton better. He IS a big baby and knows it, but I am partially to blame as I spoil him rotten and always have. Now that I have returned to work part-time, it's been a real strain on our marriage as I simply do not do everything as per the usual. He resents the heck out of my job, but I had no choice, these drugs are powerfully expensive and we still are paying for his TRANSPLANT for crying out loud. (Over 50K) I love my job, turns out, which is a blessing becasue it is very physically exhausting (nursing, believe it or not).
Hubby traveled extensivley all thru 31 years of marriage, so I just did everything.House, Yard, Bills, Taxes, Car maintenance, raised 5 kids. He just was never home. Trying to get him to step up and do something is like beating a dead horse..he just doesn't "get it" that he can take his own vehicle to have the oil changed. I guess he thought the oil fairy did it. Or put dirty clothes in the hamper. Or a dirty dish in the DW instead of on the nightstand. Very, very slowly is he coming around to the realization that although, yes, he worked and supported the family financially all these years, that is all he did. I did the rest. Now I have to shoulder the burden of all I have always done plus bring in a certain amount of income, too. I think the light is beginning to come on.
I know I'm real whiny on this post, and I think it's becasue I feel free to express what I cannot say to him but wish I could. I look at that emaciated, sick, sick man and my heart bleeds. We have been thru hell the last 2 years and I, for one, am sick of it. He's had countless mini-vacations with friends, family, etc, and I have gone nowhere, because I have to work and run the home. This is an issue for counseling. I know. It will be addressed soon.
Time for bed for this old gal--BTW, he didn't even take his bag balm...nobody to put it on his tender eyelids.
I don't care how friggin' sick he is.
He sounds like a royal PITA and you sound like you've got your hands full.
Enjoy your reprieve.
wyntre
He sounds like a royal PITA and you sound like you've got your hands full.
Enjoy your reprieve.
wyntre
I hope that you're feeling better now that you get a bit of a break. Geez! I went through treatment and I had sides too, but somehow most of us make it through and are still able to balm up our own eyelids. He's spoiled rotten! I really hope you get some rest and relaxation because you really deserve it.
Kathy
Kathy
Its so weird. I think when you're single or divorced you just get used to doing everything on your own. I HATE like hell to ask for help when I'm sick and there have been a couple times I've had to since I've been on tx. I've just been too sick to do something on my own a couple of times. But I've managed some pretty complex medical issues alone most of my life, and I guess this one is more or less no exception (to me). I have family here and they've all been at Gulf Shores for three weeks now (my father, stepmother and grandmother). So they're no help. My son is 19 and works and attends school full time. He helps when he's home and not asleep, which is not much of the time. So, he's willing, just not able.
My best friend Valerie does come over and help with housework once every week or two for a couple of hours and if I need to hop a ride to the ER at night, she'll take me and then pick me up... It's handy that we found out last week that apparently, she won't even balk at cleaning up puke. Ok, well, she'll puke while she cleans it up, making an even bigger mess, but still... she's willing to take it on. On the other hand, I write term papers for her online courses... Hey! Gotta have something to do lying in bed all day ;)
I don't know. I don't necessarily always want someone helping me though. I mean, sure. There are times when it would be REALLY nice, don't get me wrong. But I'm pretty independent. I have had this annoying guy trying to leach onto me since I've been sick and I just really want to be by myself a lot right now.
Oh yeah, but back to what this thread was about... Just because your husband is sick does not mean that the normal rules of a relationship don't apply. If there are some things you resent, tell him. It seems to me that some of the issues the two of you have may actually be marital issues that need to be worked out and are exacerbated by the illness. Just ways that you've learned to deal with each other that might not really be working for either of you all that well anymore. Especially if nobody is really happy. Sometimes crisis time is a good time to implement change, believe it or not.
My best friend Valerie does come over and help with housework once every week or two for a couple of hours and if I need to hop a ride to the ER at night, she'll take me and then pick me up... It's handy that we found out last week that apparently, she won't even balk at cleaning up puke. Ok, well, she'll puke while she cleans it up, making an even bigger mess, but still... she's willing to take it on. On the other hand, I write term papers for her online courses... Hey! Gotta have something to do lying in bed all day ;)
I don't know. I don't necessarily always want someone helping me though. I mean, sure. There are times when it would be REALLY nice, don't get me wrong. But I'm pretty independent. I have had this annoying guy trying to leach onto me since I've been sick and I just really want to be by myself a lot right now.
Oh yeah, but back to what this thread was about... Just because your husband is sick does not mean that the normal rules of a relationship don't apply. If there are some things you resent, tell him. It seems to me that some of the issues the two of you have may actually be marital issues that need to be worked out and are exacerbated by the illness. Just ways that you've learned to deal with each other that might not really be working for either of you all that well anymore. Especially if nobody is really happy. Sometimes crisis time is a good time to implement change, believe it or not.
I think the best time for my wife was when I took Short Term Disability leave from work. I slept 10 hours and then got up to go to the couch and sleep. She went to work as usual.
I fed and watered the 8 cats and 3 dogs and changed out the two automatic litter boxes twice a week.
I was responsible for taking my own meds and feeding myself. Sometimes I forgot my INF or Procrit shot and she would remind me, bless her heart.
At times during tx, she or I would get snappy but we got over it.
Thank God for the caregivers.
I fed and watered the 8 cats and 3 dogs and changed out the two automatic litter boxes twice a week.
I was responsible for taking my own meds and feeding myself. Sometimes I forgot my INF or Procrit shot and she would remind me, bless her heart.
At times during tx, she or I would get snappy but we got over it.
Thank God for the caregivers.
I feel for what you are going thru with aging parents...already done that (twice) no fun there.
No, my children are not able to help out at all. Ihave a 20 yo who lives at home who actually is the source of a lot of the stress. We need her to leave, but she cannot seem to hold a job and she is a trial and problem unto herself. Hubby will not interact with her and she tells me constantly what a terrible job I have/am done caring for him. One son, lives out of state, calls occasionally but does not believe his perfect dad could be as ill as I portray him, and he wouldn't be helpful anyway. Oldest daughter had a baby last week. Third daughter has 2 small girls herself, Fourth daughter is in school 20 hours a semester and has a hubby in Med School and I just mentioned the "baby". Hubby's mom is a nutjob and doesn't even know he has HepC. If she did she would not even come into our home.
My best support is my own mom who cared for my dad as he slowly died of Parkinson's. Truth be told, Hubby doesn't need daily care, he's just so darn demanding of me all the time. I cannot take personal calls at work and he will STILL call me, which has gotten me in trouble a few times. Today he went on a business trip and called as soon as he got into his hotel room frantic because he was certain someone had stolen all his drugs. Nope, he's packed & repacked so many times he'd ended up putting them on the piano of all places. I found them, raced to the FedEx place, packaged them and overnighted them to him. Cost:$75. Did he even thank me? No, chewed me out for being "uncooperative". Who left the dang drugs on the piano, for crying out loud?? This was in no way , shape or form my fault, but he makes everything seem as if it is.
Honestly, if I hadn't come home and taken a long nap (still have a cold) I think I would have written him an email and asked for a legal separation. KNOWING it's the drugs....helps....but it still hurts so much. I think a lot of caregivers fee like I do--we don't want our love for the person we're caring for to die before they get through TX.
God moves in mysterious ways, tho. My son just called and told me he & his wife are expecting their 2nd child on the same day as my hubby's last shot is due. A sign? Perhaps, maybe just a little sunshine around the edge of the cloud that is always hanging around. I'll take it.
No, my children are not able to help out at all. Ihave a 20 yo who lives at home who actually is the source of a lot of the stress. We need her to leave, but she cannot seem to hold a job and she is a trial and problem unto herself. Hubby will not interact with her and she tells me constantly what a terrible job I have/am done caring for him. One son, lives out of state, calls occasionally but does not believe his perfect dad could be as ill as I portray him, and he wouldn't be helpful anyway. Oldest daughter had a baby last week. Third daughter has 2 small girls herself, Fourth daughter is in school 20 hours a semester and has a hubby in Med School and I just mentioned the "baby". Hubby's mom is a nutjob and doesn't even know he has HepC. If she did she would not even come into our home.
My best support is my own mom who cared for my dad as he slowly died of Parkinson's. Truth be told, Hubby doesn't need daily care, he's just so darn demanding of me all the time. I cannot take personal calls at work and he will STILL call me, which has gotten me in trouble a few times. Today he went on a business trip and called as soon as he got into his hotel room frantic because he was certain someone had stolen all his drugs. Nope, he's packed & repacked so many times he'd ended up putting them on the piano of all places. I found them, raced to the FedEx place, packaged them and overnighted them to him. Cost:$75. Did he even thank me? No, chewed me out for being "uncooperative". Who left the dang drugs on the piano, for crying out loud?? This was in no way , shape or form my fault, but he makes everything seem as if it is.
Honestly, if I hadn't come home and taken a long nap (still have a cold) I think I would have written him an email and asked for a legal separation. KNOWING it's the drugs....helps....but it still hurts so much. I think a lot of caregivers fee like I do--we don't want our love for the person we're caring for to die before they get through TX.
God moves in mysterious ways, tho. My son just called and told me he & his wife are expecting their 2nd child on the same day as my hubby's last shot is due. A sign? Perhaps, maybe just a little sunshine around the edge of the cloud that is always hanging around. I'll take it.
Thank you for your honesty. You may not feel lucky but you are when you consider that at least you are in touch with how you feel. I'm at my parent's home right now dealing with the ultimate inevetability of them moving into assisted living. My dad (the caregiver) is angry all the time but won't admit it (or can't) and refuses his children's help and support. So, with that said, I think you are one step closer to resolving your problems. Are your children available to help you? Can you demand them to come and give you a break? Personally, being here, seeing the situation first hand has given me so much more compassion for my dad (even though he continues to make me crazy!)
So, know that you are not alone!
Also, would talking to a professional help? I'm a big believer in talk therapy.
Here's a little game I play when I'm feeling down: I ask myself, "Could it be any worse?" and the answer always comes back a resounding "YES, it can!"
Liz, I'm really not one to be giving pep talks because I wouldn't last one day doing what you do. So take comfort in the fact that you've already surpassed many in your caregiving skills.
Keep fighting the good fight.
Anna.
So, know that you are not alone!
Also, would talking to a professional help? I'm a big believer in talk therapy.
Here's a little game I play when I'm feeling down: I ask myself, "Could it be any worse?" and the answer always comes back a resounding "YES, it can!"
Liz, I'm really not one to be giving pep talks because I wouldn't last one day doing what you do. So take comfort in the fact that you've already surpassed many in your caregiving skills.
Keep fighting the good fight.
Anna.
I may be a soldier but I am by no means a saint. Hunbby commented this am (as I drove him to the airport--gosh I hope this 12 day trip doesn't do him in!) that I am the one with Riba rage--he's perfectly fine, and he'd really like me to work on my "snapping" at people. (True I snap at our 20 y.o. who just lost her 2nd or 3rd job in as many months....won't get out of bed but parties all night, every night....sheesh, who WOULDN'T snap at HER!?) This comment alone made it real easy to leave him curbside.
I plan on taking the next 12 days to do exactly what I want. Sleeping late and reading and calling friends. I do not plan on worrying about him. I do have to run to the Dr's as I have been having weird chest pains, which I am sure are stress, but she wants to do an EKG. Big waste of time I had one in Feb and I was fine.
If hubby had to be his own caregiver the state would have to step in. I left him home for 1 day and our poor dog was drinking out of the toilet and scavenging the garbage b'cuz Hubby failed to feed & water her. Only job he HAD to do. Good luck to you, Wyntre...I don't know if going it alone is better or worse. Hope you have a network of support of some kind.
Best,
Liz
I plan on taking the next 12 days to do exactly what I want. Sleeping late and reading and calling friends. I do not plan on worrying about him. I do have to run to the Dr's as I have been having weird chest pains, which I am sure are stress, but she wants to do an EKG. Big waste of time I had one in Feb and I was fine.
If hubby had to be his own caregiver the state would have to step in. I left him home for 1 day and our poor dog was drinking out of the toilet and scavenging the garbage b'cuz Hubby failed to feed & water her. Only job he HAD to do. Good luck to you, Wyntre...I don't know if going it alone is better or worse. Hope you have a network of support of some kind.
Best,
Liz
You are a real soldier, not to mention a saint.
i really feel for what you're going through even though I am my own (reluctant) caregiver
and it seems i don't do such a great job of it.
You must get time for yourself and put yourself first. you need space, time, reflection, decompression, privacy, putting down the burden for a few days.
I hope you can arrange this for yourself ASAP, Liz.
wyntre
i really feel for what you're going through even though I am my own (reluctant) caregiver
and it seems i don't do such a great job of it.
You must get time for yourself and put yourself first. you need space, time, reflection, decompression, privacy, putting down the burden for a few days.
I hope you can arrange this for yourself ASAP, Liz.
wyntre
Again, thanks for the comments. I am very nervous about him being on the Provigil. He plans to take it only for the duration of this trip and then only if absolutely necessary. He took one this am and it did give him a much needed boost, although he was noticeably more irritable tonight. He went to visit a new grandbaby whom he will not see for 10 days and I sent him alone. I could tell he was itching for a fight or something, just the way he was talking. I am going to bed so I will be asleep when he gets home. He has to leave at 8;30 am and I will be taking him to the airport....nervously hoping he;ll be ok for the 10 days. It's the weekend that worry me--y'all know what those are like. (He's on Celexa for an AD, and it does help, but the Riba rage is a powerful enemy).
Yep, wish I could go away for a long, long time. Haven't had a vacation in 3 years and THAT was tending a newborn grandbaby for a month so her mom could do her final rotation in Med School. Not really a vacation at all. Just a change of location!
I have cried my eyes out today and feel calmer and more able to deal. IF he can man thru this trip and IF the one kid remaining at home doesn't push me over the edge, I do plan to take a mini-vacation. I just got a call to go back to work a week earlier than I had planned, so I only have one week, but hope to make the best.
If my rant and rage makes one personon TX be kinder and more thoughtful to their caregiver(s) for one day I will feel justified in all I have said. WE KNOW IT'S HARD ON YOU...IT'S HARD ON US TOO!!! I have told my hubby a ahundred times that if I could take this from him I would do so in a heartbeat. And he has said he wishes he could. That's how we feel--the caregivers. Am I right? Totally helpless.
Yep, wish I could go away for a long, long time. Haven't had a vacation in 3 years and THAT was tending a newborn grandbaby for a month so her mom could do her final rotation in Med School. Not really a vacation at all. Just a change of location!
I have cried my eyes out today and feel calmer and more able to deal. IF he can man thru this trip and IF the one kid remaining at home doesn't push me over the edge, I do plan to take a mini-vacation. I just got a call to go back to work a week earlier than I had planned, so I only have one week, but hope to make the best.
If my rant and rage makes one personon TX be kinder and more thoughtful to their caregiver(s) for one day I will feel justified in all I have said. WE KNOW IT'S HARD ON YOU...IT'S HARD ON US TOO!!! I have told my hubby a ahundred times that if I could take this from him I would do so in a heartbeat. And he has said he wishes he could. That's how we feel--the caregivers. Am I right? Totally helpless.
I'm sure if I did live with anyone else either they or i would now be deceased. Either I would have driven them mad or i woulda murdered them in a fit of riba-rage.
I'm more the wounded-animal-that-skulks-off-to-their-den -to-nurse-their-injuries type, myself. Knowing that probably makes the SX a little easier to tolerate. . . and even then it's brutal.
I just have ZERO expectations of others.
What week are you on? Isn't it somewhere around 32?
wyntre
coz mselves back to healtr
I'm more the wounded-animal-that-skulks-off-to-their-den -to-nurse-their-injuries type, myself. Knowing that probably makes the SX a little easier to tolerate. . . and even then it's brutal.
I just have ZERO expectations of others.
What week are you on? Isn't it somewhere around 32?
wyntre
coz mselves back to healtr
I, like you live alone...and most of the time, I do find it a luxury. I relate strongly to this statement, "There are days I deliberately avoid any human contact cause I'm so friggin' irritable and anti-social " and sometimes...."I can barely stand myself "...fits me to a T.
Hopefully.....this too shall pass.....
Other times, I want someone to rub my back...feed me soup and tuck me in.....I guess I can't have 'everything'....understatement of the month.
uh oh...sounds like 'm startin' my own pity party. (not MyOwn but my own ;)..
Can't go there...it'll only make things worse.
Better days ahead, please God.
Y
Hopefully.....this too shall pass.....
Other times, I want someone to rub my back...feed me soup and tuck me in.....I guess I can't have 'everything'....understatement of the month.
uh oh...sounds like 'm startin' my own pity party. (not MyOwn but my own ;)..
Can't go there...it'll only make things worse.
Better days ahead, please God.
Y
Liz, I'm sure you know that post above was for you, not me writing to me...once again proving the brain cylinders could use some tuning or fog lights : ))))))))).
I also wanted to ask, what AD did they put your hubby on....reason being, the Riba itself makes people speedy and snarley, and some AD's can add to that, meaning a double dose of jitters/grouch/and sleep probs. Making sure he's not on More than he need to be, or one that is know to be too stimulating is part of the delicate equation of how to treat liver people. A good doc knows this, but some don't know hard some AD's are on the liver, or how much over stimulation can actually work against what you are trying to achieve.
of course, until someone has been on a drug for a few weeks, it's hard to be sure what dose is best.
but like with kids, and old people, they metabolize things differently because their kidneys and livers can't handle as much...well same with hep patients.
In children especially they see where a downer will act like an upper to the child, and vise-versa...so just be sure he's not being overdosed there, and think about whether he is using the TV and the laptop to distract him from the discomfort he's in. If I'm really doing bad, I can't do the laptop, but most days it's just a dull throb, and I manage to ignore it by writing or reading or viewing...but when someone speaks to me...sometimes it like draws me out of my focus, and intensifies the pain 5x's...and that does then make me growlly, amplified by the Riba which seems to remove all the fuses....it's kinda like a sick animal doesn't want you to touch the sore paw....for some reason, the brain can go somewhere else, and avoid much of the pain, without pain killers, but then when pulled back to reality it's literally like another punch in the tummy.
don't know what stage he's at...but just something to consider.
also, if he is on painkillers they can make us bit.chy.....a delicate balance there as well.
I also wanted to ask, what AD did they put your hubby on....reason being, the Riba itself makes people speedy and snarley, and some AD's can add to that, meaning a double dose of jitters/grouch/and sleep probs. Making sure he's not on More than he need to be, or one that is know to be too stimulating is part of the delicate equation of how to treat liver people. A good doc knows this, but some don't know hard some AD's are on the liver, or how much over stimulation can actually work against what you are trying to achieve.
of course, until someone has been on a drug for a few weeks, it's hard to be sure what dose is best.
but like with kids, and old people, they metabolize things differently because their kidneys and livers can't handle as much...well same with hep patients.
In children especially they see where a downer will act like an upper to the child, and vise-versa...so just be sure he's not being overdosed there, and think about whether he is using the TV and the laptop to distract him from the discomfort he's in. If I'm really doing bad, I can't do the laptop, but most days it's just a dull throb, and I manage to ignore it by writing or reading or viewing...but when someone speaks to me...sometimes it like draws me out of my focus, and intensifies the pain 5x's...and that does then make me growlly, amplified by the Riba which seems to remove all the fuses....it's kinda like a sick animal doesn't want you to touch the sore paw....for some reason, the brain can go somewhere else, and avoid much of the pain, without pain killers, but then when pulled back to reality it's literally like another punch in the tummy.
don't know what stage he's at...but just something to consider.
also, if he is on painkillers they can make us bit.chy.....a delicate balance there as well.
You don't sound cruel or uncaring or selfish; you just sound like a human trying to be a superhuman.
this TX is so rough that half the time i can't stand being around myself which is why I try my best not to inflict it on anyone else.
As a single person, I have that relative luxury.
I can't imagine having to be around anyone else 24/7 on these meds. There are days I deliberately avoid any human contact cox I'm so friggin' irritable and anti-social and even people I don't know, like store clerks or waitresses or gas station attendants, and will never see again get on my last nerve.
Of course I can barely stand myself and there are times when my only escape is sleep, for which i take ambien.
Don't be so hard on yourself. you've gone through h*LL and right now there doesn't seem to be a clear end in sight.
i agree it would be great if you can take some time for yourself but I'm thinking more like weeks instead of hours: days at the very least.
I hope your husband's trip gives you some space and time to reflect.
And rant all you want whenever you want.
wyntre
this TX is so rough that half the time i can't stand being around myself which is why I try my best not to inflict it on anyone else.
As a single person, I have that relative luxury.
I can't imagine having to be around anyone else 24/7 on these meds. There are days I deliberately avoid any human contact cox I'm so friggin' irritable and anti-social and even people I don't know, like store clerks or waitresses or gas station attendants, and will never see again get on my last nerve.
Of course I can barely stand myself and there are times when my only escape is sleep, for which i take ambien.
Don't be so hard on yourself. you've gone through h*LL and right now there doesn't seem to be a clear end in sight.
i agree it would be great if you can take some time for yourself but I'm thinking more like weeks instead of hours: days at the very least.
I hope your husband's trip gives you some space and time to reflect.
And rant all you want whenever you want.
wyntre
Being the wife of an alcoholic, I learnt that I had to ask myself not "Am I able to do this?" but "Do I want to do this?". Always, always would my man have greater needs than I. I waited for it to be my turn, but it never was. Finally I crashed into OCD.
If I don't put myself and my needs first at times, he certainly never will. It's not easy, I know. I asked him (we have split up now) and my adult daughter for help the other week, with the result of my workload being multiplied after heavy family arguments.
We are both fighting hep C now, taking turns at treating, but luckily we have not had to go through liver transplant and cancer like your husband and you have. I can't imagine the burden this must have been and still is on you both.
If I don't put myself and my needs first at times, he certainly never will. It's not easy, I know. I asked him (we have split up now) and my adult daughter for help the other week, with the result of my workload being multiplied after heavy family arguments.
We are both fighting hep C now, taking turns at treating, but luckily we have not had to go through liver transplant and cancer like your husband and you have. I can't imagine the burden this must have been and still is on you both.
Enjoy his trip away....order food in, take a hot bath, go to your own bed early.
I took Provigil for 5 months of my last treatment. Be careful with it. Provigil gave me energy the first part of the day but I crashed in the afternnoon. The FDA recently issued an adverse symptoms warning about Provigil that it can cause serious rashes and psychiatric issues.
I took Provigil for 5 months of my last treatment. Be careful with it. Provigil gave me energy the first part of the day but I crashed in the afternnoon. The FDA recently issued an adverse symptoms warning about Provigil that it can cause serious rashes and psychiatric issues.
I had a friend, Jack Slater, who wrote a series of articles about hep c. liver transplant, re-occurring hep c and then he died.
The series are on=line @ Seattle Times, Seattle, WA.
There's alot of ways people react. My caregiver many sexual encounters and mistresses b/I was so sick I never knew--I just was giving him his 'space' after going thru tx w/me and then multiple other health problems.
And now that I'm @ the end of the line, I'm alone. 42 yrs of hep c take their toll and the virus seems to be back after 6 yrs.
I was the exact opposite of your husband b/the results were the same--broken relationships and a lonely death for someone.
The series are on=line @ Seattle Times, Seattle, WA.
There's alot of ways people react. My caregiver many sexual encounters and mistresses b/I was so sick I never knew--I just was giving him his 'space' after going thru tx w/me and then multiple other health problems.
And now that I'm @ the end of the line, I'm alone. 42 yrs of hep c take their toll and the virus seems to be back after 6 yrs.
I was the exact opposite of your husband b/the results were the same--broken relationships and a lonely death for someone.
Well, I posted this late last night, packed up my gear for the sofa downstairs and knew my cyberfriends would come up with a lot of much needed shoulders to cry on and I wasn't disappointed. (scratchinnghead, I laughed pretty hard, thanks)
A lot of good ideas and some that can and possibly will be implemented--esp the idea that you need to have the TV on 24/7 to distract you. I can sleep downstairs for 7 more months, I guess) I had not thought of that. This has always been hubbys "style" and has been more of a way to block out intimacy (yep, we're in marriage counseling) than anything else, but lately, it's just for the noise, action and distraction and I will remember that.
We have 5 kids, all but one are married and busy with their own lives. I would not dream of involving them in this. The one who lives at home has serious mental issues (bipolar or personality disorder or goodness knows what-and has "fake" attempted suicide a couple of times..last time wound up in the psych ward for 10 days--scared the snot out of her) so is as useful and supportive as wet tissue paper. In fact, I wish she would move out, she is a real drain on me. She is hyper ciritcal of the care I give her dad and that makes things a lot worse. I told her she could do it, then, and she said "He's YOUR husband and you're doing a shi++y job of caring for him." Lovely young lady, all around. She turns 21 in 2 weeks-guess what she's getting?? THE BOOT!
I KNOW the Riba is making him angry. And I KNOW he should have been on AD's right from the start, it would have made things so much smoother. But things have to be his way, so I have to let him do what he wants. Eventually he usually comes around.
The ONLY person he seems to enjoy being with is his brother, who live s 1200 miles away. He visits as often as possible and God bless him, he will bundle Hubby up in the car and go for long car rides and just talk. I wish I had that capability, the one that makes him feel better, but I don't.
He is going to try to go on a business trip this week--actually it's planned for 10 days. I am terrified as no one going with him knows he's so sick. He did get a scrip for Provigil as a last ditch effort for some energy--but it doesn't seem to do anything. I am embarassed at how glad I am that he is going. I can't wait to sleep in our brand new pillow top bed after sleeping on the sofa for a week. It will be so nice to have NO TV on (I wouldn't even own one if were up to me)..no whining, no constant moaning and no 15 minute updates on the ache 'n' pain front.
I really don't mean to sound so heartless.I think I am flashing back to any one of my 5 pregnancies where he would literally step around me as I lay on the bathroom floor, alternately puking my guts out all day with other little tykes wanting mommy to get up and play....and he never once asked if I was OK or if he could take a day off and help me. 5 C-section deliveries and he rarely took a day off to take care of me or the kiddies--work always came first. I think if he saw a correlation between the two--but he doesn't-- it might make me feel just a tad more compassionate.
I KNOW I have to hang in there. And I will. I'm just tired, so tired--and it's not a physical tired at all, it's all emotional. I am a very religious person and I know there is some reason we have to go through this, I wish I could see the end and know he's going to be healed, but I also am scientific enough to know his chances are only about 30%. Haven't seen many SVR's on this board. MAybe once they're cured they never come back.
Oh well-to all you caregivers, my heart goes out to you. I honestly don't know if I can hang in there. I'm trying, but I am losing the ability to care any more. He is sucking the life out of me....I think if we'd had some break between transplant and TX it would have been a lot easier.
Oh well--off to church. Maybe that will help.
Thanks to all. You guys are great. I KNOW this stuff is hard. And to think, someday they'll have a vaccine or a one month TX and you;ll look back and go "In MY day, we treated for x number of weeks" and people will just look at you like you're crazy. It'll be like the polio vaccine, or smallpox (which nobody ever gets---) someday, huh?
A lot of good ideas and some that can and possibly will be implemented--esp the idea that you need to have the TV on 24/7 to distract you. I can sleep downstairs for 7 more months, I guess) I had not thought of that. This has always been hubbys "style" and has been more of a way to block out intimacy (yep, we're in marriage counseling) than anything else, but lately, it's just for the noise, action and distraction and I will remember that.
We have 5 kids, all but one are married and busy with their own lives. I would not dream of involving them in this. The one who lives at home has serious mental issues (bipolar or personality disorder or goodness knows what-and has "fake" attempted suicide a couple of times..last time wound up in the psych ward for 10 days--scared the snot out of her) so is as useful and supportive as wet tissue paper. In fact, I wish she would move out, she is a real drain on me. She is hyper ciritcal of the care I give her dad and that makes things a lot worse. I told her she could do it, then, and she said "He's YOUR husband and you're doing a shi++y job of caring for him." Lovely young lady, all around. She turns 21 in 2 weeks-guess what she's getting?? THE BOOT!
I KNOW the Riba is making him angry. And I KNOW he should have been on AD's right from the start, it would have made things so much smoother. But things have to be his way, so I have to let him do what he wants. Eventually he usually comes around.
The ONLY person he seems to enjoy being with is his brother, who live s 1200 miles away. He visits as often as possible and God bless him, he will bundle Hubby up in the car and go for long car rides and just talk. I wish I had that capability, the one that makes him feel better, but I don't.
He is going to try to go on a business trip this week--actually it's planned for 10 days. I am terrified as no one going with him knows he's so sick. He did get a scrip for Provigil as a last ditch effort for some energy--but it doesn't seem to do anything. I am embarassed at how glad I am that he is going. I can't wait to sleep in our brand new pillow top bed after sleeping on the sofa for a week. It will be so nice to have NO TV on (I wouldn't even own one if were up to me)..no whining, no constant moaning and no 15 minute updates on the ache 'n' pain front.
I really don't mean to sound so heartless.I think I am flashing back to any one of my 5 pregnancies where he would literally step around me as I lay on the bathroom floor, alternately puking my guts out all day with other little tykes wanting mommy to get up and play....and he never once asked if I was OK or if he could take a day off and help me. 5 C-section deliveries and he rarely took a day off to take care of me or the kiddies--work always came first. I think if he saw a correlation between the two--but he doesn't-- it might make me feel just a tad more compassionate.
I KNOW I have to hang in there. And I will. I'm just tired, so tired--and it's not a physical tired at all, it's all emotional. I am a very religious person and I know there is some reason we have to go through this, I wish I could see the end and know he's going to be healed, but I also am scientific enough to know his chances are only about 30%. Haven't seen many SVR's on this board. MAybe once they're cured they never come back.
Oh well-to all you caregivers, my heart goes out to you. I honestly don't know if I can hang in there. I'm trying, but I am losing the ability to care any more. He is sucking the life out of me....I think if we'd had some break between transplant and TX it would have been a lot easier.
Oh well--off to church. Maybe that will help.
Thanks to all. You guys are great. I KNOW this stuff is hard. And to think, someday they'll have a vaccine or a one month TX and you;ll look back and go "In MY day, we treated for x number of weeks" and people will just look at you like you're crazy. It'll be like the polio vaccine, or smallpox (which nobody ever gets---) someday, huh?
I don't think you're being selfish. Your feelings are valid. It's what you do with them that will make the difference.
I suggest you go out and do something nice for yourself. Get a massage, nails done, something that you enjoy so you can recharge your internal battery.
Good luck to you and your husband.
I suggest you go out and do something nice for yourself. Get a massage, nails done, something that you enjoy so you can recharge your internal battery.
Good luck to you and your husband.
Hi Liz, my name is Mike and I just completed my second round of treatment on the Vertex Prove 3 trial. I'm hoping that I'm cured.
Reading your post was like looking into a mirror image of a post I made about 7-8 weeks ago. In my post I was "whining" about my wife not understanding just how sick I feel ALL the time.
A couple people at this forum told me to give my wife and family a mini-vacation FROM ME! The treatment for HCV is a long haul that affects not only the patient but the family too. It's hard having a loved one sick for such a long time.
First off, your hubby should have started anti-depressants 2-3 weeks before starting treatment. Is he being seen by a hepatologist who is really knowledgable about HCV treatment? If so, the good docs manage side effects aggressively.
Throughout treatment I worked in a pressured job with frequest travel. By the end of the day I was so wiped there was nothing I could do. My wife stepped it up by preparing all meals for our family (we normally split the cooking about 50-50).
She just wasn't able to walk in my shoes and didn't understand the effects of treatment. I talked to her and asked her to read the responses to my posting at this forum. She didn't know that I was involved with this forum and it helped her to to read what other people had to say; on both side of treatment....that is both patients and caregivers.
Everone reacts to treatment differently. Some work, others can't. I'm not judging if your husband can or can't work.
From your post I will comment that I think your husband needs to evaluate his behavior toward you....handing him his meds, rubbing balm on his eyelids, TV 24/7.....this is a long term thing and it sounds like he may need to "man-up" on some of the minor things and be grateful for the major care-giving you offer. You sound like a keeper to me.
In return please understand that this treatment really makes you feel irratible, tired, sick and craaby. The riba can screw with your head and make small things seem much larger.
Come here anytime you need a advice or a friend. Your husband would benefit from reading this posting too.
Be strong and good luck Liz.
Mike
Reading your post was like looking into a mirror image of a post I made about 7-8 weeks ago. In my post I was "whining" about my wife not understanding just how sick I feel ALL the time.
A couple people at this forum told me to give my wife and family a mini-vacation FROM ME! The treatment for HCV is a long haul that affects not only the patient but the family too. It's hard having a loved one sick for such a long time.
First off, your hubby should have started anti-depressants 2-3 weeks before starting treatment. Is he being seen by a hepatologist who is really knowledgable about HCV treatment? If so, the good docs manage side effects aggressively.
Throughout treatment I worked in a pressured job with frequest travel. By the end of the day I was so wiped there was nothing I could do. My wife stepped it up by preparing all meals for our family (we normally split the cooking about 50-50).
She just wasn't able to walk in my shoes and didn't understand the effects of treatment. I talked to her and asked her to read the responses to my posting at this forum. She didn't know that I was involved with this forum and it helped her to to read what other people had to say; on both side of treatment....that is both patients and caregivers.
Everone reacts to treatment differently. Some work, others can't. I'm not judging if your husband can or can't work.
From your post I will comment that I think your husband needs to evaluate his behavior toward you....handing him his meds, rubbing balm on his eyelids, TV 24/7.....this is a long term thing and it sounds like he may need to "man-up" on some of the minor things and be grateful for the major care-giving you offer. You sound like a keeper to me.
In return please understand that this treatment really makes you feel irratible, tired, sick and craaby. The riba can screw with your head and make small things seem much larger.
Come here anytime you need a advice or a friend. Your husband would benefit from reading this posting too.
Be strong and good luck Liz.
Mike
I'm new to the forum. I'm the caregiver (2 years). I just want to say your words have helped me more than you know. I felt so alone in this struggle. Every day I wonder if he will be alive when I wake up. The future is so uncertian. He has hep c and liver disease.
You have every right to whine. I must tell you, the caregiver must take care of themselves first. When I started picking on my husband, I started AD's, it worked for a while then we upped them. Being on Tx. is miserable and we only let those closest to us see how miserable we are. We push through for others. I have times when I lie in bed and moan. Not a pretty picture. I want to pull the blankets over my head and sleep. I don't want to get dressed. I don't want to go to the movies. Having my husband cuddle with me is nice. It doesn't happen enough. I can be enticed to go out for ice cream. We are sleeping in seperate rooms and I too have the TV on all the time. Not sure what I am watching, but it distracts me. Go out do things you want to do. We don't need someone there 24/7. We will get through, we can get up and get our fluids and take our meds. And there are times nothing tastes good. Take care of yourself.
Teri
Teri
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