I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Spouses and Caregivers => Topic started by: Sara on August 04, 2006, 12:25:10 PM
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Ever since the dialysis stuff started, it's been really hard for me to insist that Joe do his share around the house. I feel guilty, because it's like, what if he dies? Should he spend his remaining days cleaning the bathroom, or whatever? And I've let him get away with some really frivolous purchases that if he were not sick I probably would have fought harder to avoid. I know that professionals say you should try to keep things as normal as possible, but I've been having trouble doing that. Is anyone else in the same boat?
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There are some days when I just go out and "blow a wad" thinking I´m going to die soon anyway. Then I usually regret it. I try to live as normally as possible but that little voice in the back of my head is always saying "live a little - you don´t have that much time left." My family acts as if nothing is wrong. Sometimes I ask for a little help but they kind of ignore me. I guess it´s their way of dealing with the problem :( . Your husband is lucky. I wish somebody would not make me clean the bathroom! But sometimes I feel like crap and don´t have the energy to clean anything.
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you know sara, being on the other end and being the sick one. I too expect to be pampered because i am "sick" and i just want to be. Our lives are going through something we or anyone can ever expect and sometimes we do things to make US feel better. BUT, i still believe in doing what i can do, cooking, cleaning what i can, when i can, laundry, you name it, i will eventually have to do it. Hubby works too damn hard so it doesnt bother me, as long as he doesnt bother me and start telling me what to do and when to do it (unless he is out of clean chonies) lol :P . Joe should be doing some things still, especially now that he is sick. If he does do it, it may take some time. The whole not having any energy thing is very common so give him some sympathy BUT NOT ALOT cuz then he will eat it up and get too spoiled, lol. And about these purchases, hmmmm, i dont know about at this point and time, i think i would strangle my hubby if he made any purchases without discussing them with me first. Should be a mutual decision. Good Luck and let us know how your doing with this, k,
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Well here is my take on the situation, as you know I am the one who is sick or as I like to call it "dying" >:D but my son and I do as much as we can for my wife, his mother. She is the bread winner and she goes to college. WE do all the laundry, cleaning, and I pay ALL the bills, she does not have to worry about any of that. Plus we eat out a lot so, she rarely cooks. I am even training my son to be my NxStage partner, he is learning to set up my machine and everything involved with the treatment. I always have the house all clean when my wife comes home. But It does help I have a wonderful son who works for his very expensive toys like his PSP, IPOD, DS, so on and so on.
And my wife is great when it comes to me wanting something, she never tells me no, in fact she likes it when I treat myself, like right now I am sitting in front of my new 20" Dell Ultrabright Digital LCD. 8)
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I think it wasn't hard for her to treat me pretty much normally when I was sick. In some ways I took care of things around the house better when I was on dialysis than I do now. We both always worked but she went the extra distance for me by bringing dinner down after a 10 hour day and a 90 mile commute and being understanding when it came to my limitations as far as being on the dialysis tether and what that would allow us to do. She was with me every step of the way and in fact forced me to go to the Dr. one day before I started emergency dialysis which was a day when I happened to be very close to death according to the treating physicians. She was with me in the hospital that day, with me for the transplant evaluation, and with me the day we beat feet to San Diego for the big event. Without her support, I wouldn't be here to post today, I would have been gone 7 1/2 years ago.
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you all are so lucky!
I hope this isn't off topic but it is a reply to what this thread is about.
When I first lost my transplant I was living with my ex-boyfriend Jay who was a truck driver and only came home to sleep or eat or jump on his computer or else go out to strip bars with his best friend. I had to give up my 9 year job because I couldn't do the 12-hr shifts anymore since I said I didn't want HD but wanted to be back on PD like I was when I was 16. But that meant CAPD 4 times a day until I could be trained to do the nocturnal CCPD.
My hemoglobin dropped extremely low (so low the nurse said that she was surprised I ever got out of bed much less tried to still go to work) and I asked my boyfriend to go with me to the store which was only a block away. He got mad at me calling me lazy. We eventually broke up because he was mad that I was not "independent" like I used to be...
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Every time I go to visit with Angie, she seems so perky and happy that I sometimes forget that she doesn't have the normal energy level as a healty person her age. Then when I see her get worn out just by walking down the stairs, I am quickly reminded of just how tired and weak she really is. I always want to do so much for her but she is about as stuborn as I and insists that she helps or joins me. Since I have the strength and energy, I have no problems doing any of the manual labor like cleaning her apartment or taking her to the store to do some shopping or whatever. I just have to keep reminding myself to slow down to her pace so we can keep going together.
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All I know is it is hard to do it all. My hubby took over the cooking and shopping for the past seven and a half years, now I am back to doing it for him. Our lives have taken a strange turn around here. I have been on dialysis or "sick" for so long and he took care of me. With his accident I am taking care of him. We have a lot of help right now with the CNAs coming and cooking and cleaning for him. I could get used to this!
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All I know is it is hard to do it all. My hubby took over the cooking and shopping for the past seven and a half years, now I am back to doing it for him. Our lives have taken a strange turn around here. I have been on dialysis or "sick" for so long and he took care of me. With his accident I am taking care of him. We have a lot of help right now with the CNAs coming and cooking and cleaning for him. I could get used to this!
CNA's? Is that like my VON's or CCACN's?
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CNA- Certified Nurses Aide. Must be high school educated and go through a training course.
I have no idea what a VON is or a CCACN is/are?
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CNA- Certified Nurses Aide. Must be high school educated and go through a training course.
I have no idea what a VON is or a CCACN is/are?
VON = I thought the V was for Vocational but it turns out I was wrong .. it stands for: Victorian Order of Nurses
CCACN = Community Care Access Centre Nurse
It was a nurse from the CCAC that had to help me do the Eprex (Epo) injections when I was on PD and afraid to do them myself. I know .. it was a very small needle given subcutaniously but it still scared me. But she got me to start doing it myself and then her job was done and I was on my own. But now that I am on Hemo I don't have to do that anymore.
When I still lived with Jay he would do it for me sometimes but I had to learn to do it myself.
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Ever since the dialysis stuff started, it's been really hard for me to insist that Joe do his share around the house. I feel guilty, because it's like, what if he dies? Should he spend his remaining days cleaning the bathroom, or whatever? And I've let him get away with some really frivolous purchases that if he were not sick I probably would have fought harder to avoid. I know that professionals say you should try to keep things as normal as possible, but I've been having trouble doing that. Is anyone else in the same boat?
Sara,
I also have trouble keeping things normal. In the beginning when my hubby first found out he was sick, neither of us realized how serious it was. We both continued to work and do everything that we always had done. It wasn't very long before our fast paced lives caught up with us and hubby started having complications. We realized that nothing would be the same again.
While we don't have enough money left over at the end of the month for him to make frivolous purchases (although he did talk me into a big screen TV last year ;)), I do have trouble denying him things or making him do things around the house. Basically he has not cooked or cleaned in about 3 years now. I really do baby him because I'm like you, what if today is the last day he'll ever have? Do I want my last memory of him crouched down cleaning out the vegetable bin in the fridge?
There are some days when I will make him help me with simple tasks, not really because I want him to do it, but just so we can do something together. Right now, my hubby is still in the hospital recovering from a bacterial infecton and having part of his arm amputated and I spend all of my free time up there running about making sure he is comfortable and getting things for him. So, I'm sure he is enjoying every minute of it. :D
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Sara,
I also have trouble keeping things normal. In the beginning when my hubby first found out he was sick, neither of us realized how serious it was. We both continued to work and do everything that we always had done. It wasn't very long before our fast paced lives caught up with us and hubby started having complications. We realized that nothing would be the same again.
While we don't have enough money left over at the end of the month for him to make frivolous purchases (although he did talk me into a big screen TV last year ;)), I do have trouble denying him things or making him do things around the house. Basically he has not cooked or cleaned in about 3 years now. I really do baby him because I'm like you, what if today is the last day he'll ever have? Do I want my last memory of him crouched down cleaning out the vegetable bin in the fridge?
There are some days when I will make him help me with simple tasks, not really because I want him to do it, but just so we can do something together. Right now, my hubby is still in the hospital recovering from a bacterial infecton and having part of his arm amputated and I spend all of my free time up there running about making sure he is comfortable and getting things for him. So, I'm sure he is enjoying every minute of it. :D
Oh my gosh, I'm so sorry to hear about his arm. Do you mind sharing what exactly happened?
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It's a long story, so don't say I didn't warn you. ;)
Well since the beginning of this year his fistula has been clotting off. He was going to the access center to have the clot removed at least once a month since January. One Sunday night in June I just decided to check it. (He goes M-W-F) and I could tell it was clotted again. I had him feel it and I even put my ear to it and couldn't hear or feel anything. So, we pretty much knew that he would have to go to the access center, which is about a 30 minute drive from where we live. So, he got up that morning to call dialysis and tell them that he knew it was clotted. They still made him come in so they could listen. Of course, it was clotted like we thought so they called his nephro and he had hubby go to the hospital so that a surgeon could get in there and see what was going on. So, he went in on Monday, was there for a week, got operated on EVERY day because just as soon as the clot was removed and he woke up the next morning, it was clotted again. Finally after Friday's surgery it didn't clot. He came home the following Monday night after dialysis at the hospital. The fistula was still fine through Tuesday night. On Wednesday when he went to dialysis it was clotted again. He goes back to the hospital and they do more surgery. He comes home for the weekend, but by Sunday he is in so much pain I take him back and they put him in a room. After he had the first series of surgeries he was having problems with numbness in his hand and forearm. He said it was very painful. So, on Sunday they tell him they think he has "steel syndrome" and they are going to take a look and see. I forget if that's what it was or not, but they gave him some clot buster medication to get rid of the clot. During some course of this hospitalization they decide his blood is too thick and start him on coumadin. He is there for nearly 2 weeks while they try to figure out the correct dosage. One night a nurse comes in to check his blood sugar and pricks one of the few fingers he had left on the numb hand. His finger starts turning black after this. (oh, and I forgot they put in an IJ catheter for dialysis since the fistula wasn't working) He comes home and goes back a couple of more times. After he comes home the last time the fistula is actually pumping but the doc (surgeon) doesn't want it used until the swelling from all of the operations goes down. (sometime in the middle of all of this they take him off of the coumadin) So, not surprisingly, the fistula clots again and he gets an appointment to go back to the hospital to have outpatient surgery. Over the weekend (July 22-23)he is in a lot of pain and can't sleep because of it. He calls the doctor (the nephro) but he tells him to just wait until Monday when he is supposed to go in anyway. Anyway come Monday morning and my hubby is loony as a cuckoo bird. He is hallucinating and talking strange. We take him to the hospital and they admit him instead of doing the surgery. He is completely out of it for an entire week and it isn't until Thursday that they tell us that he has clostridium difficile colitis which is a bacterial infection that is in your colon. (they think that was causing his delirium) But the entire time that they are treating him for the infection, they aren't doing anything about his arm. So by the time he comes out of his stupor (the following Monday) it's really too late. ( the surgeon told me that his fistula worked TOO good and kept all of the blood up towards the top of the arm and was only letting a small amount through to the hand or forearm, so when it clotted it just stopped sending blood down there completely) His hand is swollen and cold. His fingers are rigid. It was a bad deal and he is pretty down about it. He is supposed to start at the rehab hospital today to get some physical therapy and get his strength back. I probably left tons of stuff out, so if you have any questions feel free to ask.
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Gosh what a nightmare! I am so sorry you two are going through this! I'd pamper him too - at least for a little while... ;)
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I totally agree with Jerseygirl. What an experience to go through!
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...clostridium difficile colitis ...
Did they tell you that he got that because someone on staff did not follow antiseptic protocol and transmitted it to him? After all of the horrible stuff they put him through with the fistula, giving him C Diff is just unforgivable. How is he doing now? Are they going to try for another fistula?
BTW, the Vancomycin for C Diff costs about 4 times it's weight in gold, so I'm sure your insurance company was not pleased.
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...clostridium difficile colitis ...
Did they tell you that he got that because someone on staff did not follow antiseptic protocol and transmitted it to him? After all of the horrible stuff they put him through with the fistula, giving him C Diff is just unforgivable. How is he doing now? Are they going to try for another fistula?
BTW, the Vancomycin for C Diff costs about 4 times it's weight in gold, so I'm sure your insurance company was not pleased.
Of course they never mentioned how he got it. They think we are stupid. ::) Thank God for the internet! ;)
We haven't heard what their plans are for a new fistula yet. He is doing better. He is ready to get up and around but the nurses on the dialysis floor won't let him. We found out tonight that he will be going to rehab tomorrow, so at least he can start getting his muscles working again.
Is Vancomycin the same as Flagyl? That's what they are giving him for the C Diff. Medicare is our primary insurance so luckily it shouldn't cost us anything.
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I think "Oh crap" might be the words for that situation. I have just been through an amputation surgery on my husband in May. Then with a debridement and a stint on antibiotics; l I feel your pain!
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In fairness to the staff they could not have "given" him clostridium difficile colitis. C.difficile is an opportunistic infection of the bowel that occurs when the normal bacterial balance in the intestine is off -usually from chronic or acute diarrhea- that interferes with the balance of the normal intestinal flora and fauna. My husband got c.diff from the diarrhea he got when given clindamycin orally for a dental infection. The clindamycin caused him to have diarrhea and the c.diff took over. It is horrible. I think Black may mean VRE or Vancomycin Resistant Entercocci that is transmitted from an infected patient to another patient - a person can get VRE after using the bathroom of someone who had VRE and didn't clean up well.
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Sara
I know exactly what your talking about. My husband has been ill now for 5 years and I feel horrible nagging him to do things. He feels terrible after dialysis and the next day he so exhausted that he sleeps in he's recliner for half the day. He does cook and do dishes occasionally and he'll feed the pets. He tries to help with the lawn, but if it's hot outside he's body temperature will start to rise and he has to come in to cool down, since he does not sweat anymore. I try not to complain about everything I do because like you I am really just thankfull to have him around. I take one day at a time. Just know you are not alone.
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I pamper Heph all the time. I hardly ever ask him to do anything, except to wash the dishes, but that is his choice because I'm crap at it! He gets so tired so quickly that if he has to work around the house and stuff all the time he is too tired to do the things he enjoys and our time together is none existent because all he wants to do is sleep! I try not to treat him like a sick person though and know he would and could willingly help. I just don't want his life to be consumed by crappy chores when it doesn't have to be. There are more important things in life after all! ;)
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H.L.L. I just want to squeeeeeeze you, you guys drive me nuts, :) in a good way though. Heph is so lucky to have found someone who loves him the way you do just as i am sure he loves you also ;) I am sorry for pin pointing you out, you guys just remind me of my niece and her hubby now and the way me and my hubby were when we first met (and still are, 20 years later) :) You keep doing whatever it is your doing as long as it works for the both of you....
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Sheesh Goofynina, you made me blush.
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It is so hard when it is the hubby and not you who is sick.
You can control what happens to you, but are out of the control seat when it is him. I truly know what that feels like and HATE it. I want to control the situation but have to run in the back seat, not the driver's seat. All I want for Christmas is my hubby to be up and around and healed. Even if it is just the wound healed up and the vacuum pump gone out of our lives forever! I am on a rant.
H-l-l All I am trying to say is I understand. I really do. Now I have to clean the office and clear away the debris. Love to you and your H-L-L.
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Thanks Kitkatz, it's good to know there are people out there who understand. :D
Oh, and I really pray that your Christmas wish comes true. ;)
X
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When Otto get's sick i freak with all the what if's, when the kids bring home letter's about whoopping caugh going around the school i freak, it seems like i freak out alot but i get so worried about his health. He works that's all he has to do (ok i do expect thanks at night too sometimes.) but i take care of EVERYTHING else, i'm to worried he'll over do it and get sick faster. I have told him though after transplant and once he's up to it i'm taking a week off and meeting the IHD naughty girls in VEGAS!!!!! :beer1; :beer1;
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I'm the one that is on dialysis, but my fiancee is tough on me. He pampers me, and takes care of
me when I need it, but when I feel good, he expects me to be active! Which is fine with me,
I enjoy being active when I feel good! I do hate not being able to go and go as I used to.
We can't really go anywhere in public unless there is going to be seating, because I just cannot
walk as much or stand as much as I used to. I do miss that. We used to do festivals around town.
Not any more.
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I have had a very bad day as I posted on another thread
so my husband sees me after dialysis and says I have more color so he expects me to feel better
he always assumes I feel better when I do not
I do not like to be told I feel better
I feel like sh-t
and our private life can get to be a problem at times
I do not think he understands how this disease can get you down and out physically and emotionally
I know I am not the same person
I know it better than anyone
I do love him but dealing with the side effects of this PKD is exhausting
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I have had a very bad day as I posted on another thread
so my husband sees me after dialysis and says I have more color so he expects me to feel better
he always assumes I feel better when I do not
I do not like to be told I feel better
I feel like sh-t
and our private life can get to be a problem at times
I do not think he understands how this disease can get you down and out physically and emotionally
I know I am not the same person
I know it better than anyone
I do love him but dealing with the side effects of this PKD is exhausting
Is your foot size an 8 Twirl?? Because I am walking in your shoes.... ohh how I hear you! :cuddle;
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YES
and I am so glad to think I am not being a bitch
but I have reasons to feel that way I do
my husband has not called me a bitch but I still feel like one
if I he thinks I look like I feel better it is that "time"
and now we do not have kids at home but one and she works and goes to class
so.......
I am telling you more than you want to know
sorry
but it feels damn good to know I am not alone
when is school starting again
and football season with all the long hours
:2thumbsup; I really do care about him but "free" time on IHD is great
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Yes, everything Twirl said. I am in a long distance relationship, will be 5 years in April and he is here about 2-3 weeks every 3 months, he just left and I am tooo worn out from putting on my "I feel good" face when I really was so very tired. Now of course I don't even want to clean my little house, just want to veg and pout because of course he goes back and lives his normal life and I am still tied to this. Just not sure how much longer this will go on due to his expectations of me...wow finally admitted that....
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thanks
I am not the only one
thanks a million times over
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I understand, too. I think being the woman, we have taken care of everyone for so long and the men just want things to go on as they always have. I hate being asked "are you feeling bad today?" I feel I need to act like I am fine when I really want to cry and go to bed. He means well, but I know he has to miss the way life use to be. I miss it too! And I know he doesn't know what to do with me some days. I want to be treated "normal" for my "normal" at this point in my life. Does that make sense?? I want people to not focus on the kidney stuff but remember my limitations --like walking faster than I can or thinking I can't do something. It is complicated. If I can't really explain it, how can I expect anyone to understand? Thanks for letting me ramble!
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Exactly
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just keep 'em barefoot and pregnant :rofl;
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just keep 'em barefoot and pregnant :rofl;
:Kit n Stik; :Kit n Stik; :Kit n Stik; :Kit n Stik; :Kit n Stik;
You deserve that!
Twirl, oh my God, girl, you and I must share lives. My poor hubby wants me to feel better after dialysis. Sometimes I do, most of the time though, it sucks, and all I want to do is eat and sleep, or be left alone. So he has to deal with moody me most of the time. Our poor guys, they worry about us because some how they love us still, no matter what we put them through.
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just keep 'em barefoot and pregnant :rofl;
typical male response
and I thought Flip was a cut above
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how would I know?.....haven't had a spouse in almost 20 years
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Help.
I'll try to explain this as well as I can. I'm feeling very taken advantage of. I know that sounds awful. I expect very little of DH (probably less than I should since he feels pretty good the majority of the time) mostly to take out the garbage and help out with DS so I can get things done. His family has been down for the weekend and I have cooked and cleaned and had my space invaded and in general worked my ass off so that he could spend time with them now he wants to go back to their hotel room and 'hangout'. 4 adults 3 small energetic boys in one small hotel room at near bedtime = recipe for disaster. I'm exhausted. I just want to sit on my own couch and relax. I sent him and stayed home. He's mad at me. No matter how much I do, how much my life revolves around him my efforts always fall short. Never enough. He always feels that he should have gotten in one more game, one more visit etc...I'm taking care of the house, a toddler, driving him back and forth to dialysis in the middle of the night (no easy feat with a small child), acting as the information clearing house and support system for the whole family and nobody is supporting ME! I'm feeling very over worked and under paid right now. I sympathize with DH being selfish and wanting to be 'pampered', I've been truly sick before and I understand it. But he's really taken it to a new level. I don't know how to sensitively discuss this with him. I'm afraid I've been doing a poor job of it to this point. I'm very hurt that he has put his own wants so far above my needs and I have a hard time talking to him about it without getting very emotional or starting to feel like maybe his wants are more important than me... I don't know. I'm very confused and having a hard time right now.
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Yours is a very common situation for caregivers whose incredible contribution is sometimes overlooked as they are "healthy" so people tend to not understand that they're often carrying a double load physically and a quadruple load mentally. Burnout sounds like what you're experiencing. It doesn't sound awful at all to say how you feel. You're overburdened and that's a fact. You mustn't keep these feelings secret and let them turn into truly toxic deep-seated resentment.
You need to reserve time for a talk with DH. Wait until you feel calm but don't feel that you have to be abnormally sensitive. I'm sure he's not that fragile. (I'm sometimes treated with kid gloves and it's all wrong cuz I'm actually very tough and resilient). You can start by saying that you understand how crappy he feels often and how he wants to fit in all the things he wants to do in case the next opportunity is a long time coming BUT you need him to also be your partner and that sometimes means doing what you need to relieve the additional pressure on you. I'd lay it right on the line with how you feel, trying hard as you can to stick to "I" statements, like "I feel like I worked my butt off all day, extra work on top of our regular crazy busy life, and I'm happy to do that but at the end of it all I need you to help me get bedtime done smoothly and have a little quiet for ME. I don't want to spoil your fun but I'm bushed and I really needed you to help me here tonight. I felt pissed at you and I felt like you didn't understand me at all this evening. I hate feeling like this and I hate having to lay it this on you because I know things aren't a piece of cake for you but I have to feel like you can look after me a bit at times too, and this was definitely one of those times."
Obviously you'll choose you own words but focus on having him hear how you feel rather than telling him what he did wrong.
I really believe that caregivers have the roughest time of it quite often as your legs can get quite tired from the extra running around and walking on eggshells.
If this is way off base kaci just ignore it, accept a hug from me and I wish I could come over and clean up the kitchen for you. :cuddle;
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Kaci, you are a saint. you need to try and talk this out before it goes beyond repair. he needs to understand your side as you do his. I feel for you and please try and talk it out. I will bet he will understand...Boxman
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I'll help you clean up for her monrein!!! Tell him exactly how you feel using the "I" statements like monrein said. He needs to realize that even though he is the one who has kidney failure that you are dealing with kidney failure as well. My hubby is on dialysis (has been for 11 years) and life still goes on!!! He should be helping you get those kids into bed and letting you have some time just to sit and relax after a full day. It is hard mentally on "us" . I am never sure how hubby is really feeling and I worry about him sometimes. I also know that he is going to do his part with running the house etc!!! I do most of the housework and he does the maintenance though!!
Talk to him and tll him how you are feeling :flower;
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Thank you, guys. I was semi expecting to be told to buck-up so having my feeling validated is really helpful.
Monrein your post made me cry. That's exactly how I feel and when DH gets back from visiting I will try to discuss it with him. I have such a hard time discussing things. I cry VERY easily and once I start crying I can't really speak anymore. It's very frustrating. And then to top it off DH is a counselor by profession so I sometimes feel that he's treating me like a client not his wife, lol. But I'm going to give it my best.
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Write it in a letter if you feel you'll cry too much Kaci. If he makes you feel like a client, tell him you don't like it. Tell him no jargon allowed. My husband's a lawyer and I'm a former therapist and common phrases in our house are "Stop cross-examining me" and "Stop the social work crap, I'm mad". Usually we end up laughing then pick up the quarrel. You can out jargon him anyway with the "I feel like you're listening to me but I still don't feel heard".
BTW Social work, therapy, counseling jargon makes me want to run screaming into the night. I try to just "let it go" but really feel more like punching something when I hear too much of it.
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Kaci, we spend enough time telling ourselves to "Buck Up" around here - we don't pass that message on to anyone else. This is where we come to vent!
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To Sarah who started this thread. By reading all these replies to your thread, I can't make up my mind wether my John is better off without having dailysis, I know we have no choice once the time comes. But it's a waiting game for him, having to have his blood, weight and urine check, waiting for results. Every time he feels unwell I panic, he can't do much, feels tried all the time, out of breath. No one has told us what to expect if he gets that ill if he will need dailysis. No one ever checks his stoma or his hernia's or if maybe the cancer has come back.
I worry about all these things and I know he does also. I think he often thinks he wished he had never had all the operations and just let nature take it's course. He was a very strong man and can't except feeling this way.
Now my feelings. I feel I have been cheated, I am 67 and John is 73 we have only been married for 12 years, been together for about 17 and in that time we have at last built up to having own our own house. A time in life when we could start enjoying the carefree life, but then last year we were shot down in flames with John's sudden life threatening illness. I am full time carer now and at last I am excepting it, I do love him but I feel so sorry for him and just wish someone could wave a magic wand and give him back to me whole.
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:grouphug;
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Help.
I'm very confused and having a hard time right now.
Hi kaci - it's good you posted. You have a lot of responsibility and it's natural to feel overwhelmed. I hope you will take monreins advice and clear the air.
I cry easily - I always have. I get mad at myself because I feel that no one can really hear me when I am blubbering. My women friends say "I WISH I could cry - it's a release of emotions that is healthy!" They also tell me to keep going, keep sharing - and I think they are right.
My husband went through a pain clinic years ago when he first became disabled and the program had a component for the family too. They taught me that I need to have expectations of my husband, that he could do more than I was allowing - and it took awhile but I began to put some of the responsibility back on him, even though he was in pain and was struggling. I stopped doing everything for our family (we had 4 kids) I called him my "first born" because I felt like the only parent. He resented it at first, but became more involved in his own care. It's been a tough experience, and we don't always see eye to eye, but for the most part he's doing the best he can.
Sending you hugs and best wishes! :cuddle;
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You mean Marvin's not "normal"? OMG, why didn't someone tell me this before now? :rofl; We've lived like this for so long (almost 14 years now), that I thought this kind of life WAS normal.
Seriously, though, I have been accused (by others -- not my Marvin) of treating him like a baby. I want to do everything for him. I don't want him to carry a bag of groceries. I don't want him to cut the grass. I want to steady his arm when he walks down the steps. I want to fix his plate at supper. I want to put his shoes and socks on for him. I watch his EVERY move to see if he needs my help. I take my cues from him. If he starts to pick up something, I reach for it. If he doesn't say anything, I get it, but...if he says, "No, I got it," I back off and let him take it. If he wants to cut the grass (which I really, really don't want to do), I'll say, "Why don't you let me do it?" If he says okay, I cut the grass. If he says, "I can do it," I back off and let him do it.
I have found that his "normal" varies from time to time. When he first went on dialysis, I started doing everything for him -- well, just about everything. When he got his transplant, he became "Mr. Independent" and wanted to do everything for himself, so I had to back off and let him do all he wanted or all he could do. When he went back on dialysis, I started babying him more. When he went on home hemo, he wanted to do more (and could do more).
Basically now, I just follow his lead. He sets the pace and sets the agenda of what he can and cannot do, and I just follow him and pick up the slack where he can't. I know I'm a "smothering" type person. Luckily for both of us, this doesn't bother Marvin. He lets me know how much he can do. Marvin WANTS to do a whole lot more than he can physically do, and he struggles with this limitation. Other than the physically stuff, however, I think we are a pretty "normal" couple -- if there is a "normal."
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Kaci,
Caregivers are wonderful. We patients need you, respect you, and are eternally grateful for you.
It's OK to let DH know how you feel. You both need to trust each other enough to know that the other is going to be open and honest about how they feel. DH with his health problems, and you with your exhaustion, stress, and worry. Only by being open and honest can you trust each other. He will probably appreciate the talk. Maybe not at first, LOL, but eventually. Good luck to you.
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Kaci, lots of great advice here already.
I found that my husband became more self-centered as his illness got worse. I assumed he was withdrawing emotionally to protect himself from the realities of being ill. Wish I had found IHD during those days as we ended up having some pretty rough times.
When I look back, I wish I had been a little more self-focused because I am the primary wage-earner and the care-giver and I ended up at a pretty low place. As a care-giver, you have to try to stay mentally and physically healthy. Rest when you can, and rant here when you need to.
:cuddle;
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Self-centered is a good way of putting it really. I often say that when I get home I feel like folding over on myself, like folding a piece of paper into two, then four, then six. Even returning phone calls from friends can feel like an imposition. I often feel really sorry for my husband and wish I could send him away on a nice restful vacation. It was much more difficult for him however the first time we went through this because we were only 26 and 32 and it felt as though our life had been hijacked. He felt he couldn't tell me how robbed he felt because he thought it was harder for me than him but his silence was much more painful for me than any amount of total honest ranting on his part could ever have been.
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To Sarah who started this thread. By reading all these replies to your thread, I can't make up my mind wether my John is better off without having dailysis, I know we have no choice once the time comes. But it's a waiting game for him, having to have his blood, weight and urine check, waiting for results. Every time he feels unwell I panic, he can't do much, feels tried all the time, out of breath. No one has told us what to expect if he gets that ill if he will need dailysis. No one ever checks his stoma or his hernia's or if maybe the cancer has come back.
I worry about all these things and I know he does also. I think he often thinks he wished he had never had all the operations and just let nature take it's course. He was a very strong man and can't except feeling this way.
Now my feelings. I feel I have been cheated, I am 67 and John is 73 we have only been married for 12 years, been together for about 17 and in that time we have at last built up to having own our own house. A time in life when we could start enjoying the carefree life, but then last year we were shot down in flames with John's sudden life threatening illness. I am full time carer now and at last I am excepting it, I do love him but I feel so sorry for him and just wish someone could wave a magic wand and give him back to me whole.
Hi John's wife (sorry don't see your name anywhere),
I understand the cheated feeling. I'm not sure if you noticed in my signature (I think it's in my sig - I'll have to check) that Joe actually died 15 months ago. I'm now 27, he was 37. I was cheated out of children, a husband, a normal marriage, etc. So I definitely sympathize with your feelings. I also understand the constant worry and anxiety that you are feeling. All I can advise is to really cherish each day. There are SO MANY things I regret - petty fights, not being more supportive, etc., stuff that's normal in a marriage but I still regret it. When you start feeling angry and resentful (IF you do, it's normal) try to push through it. It really helped me to come here and be able to educate myself and vent to people who understand. Looking back now, I really wish I was more understanding about a lot of things. Joe was a "typical guy" (sorry guys, for the stereotyping) and was a big baby whenever he didn't feel well. If it was me sick, I'd have to work anyway, or clean, or whatever, but he always managed to milk it, LOL. I got angry about that a lot. I "knew" in my head that dialysis causes incredible fatigue, but sometimes I would forget that through my frustrations.
I don't know if any of this helps you or not. My brain's kinda foggy so I might not be making sense. If I can help at all, please feel free to send me a PM.
Take care.
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I'll chime in on the "cheated" feeling, too. Yes, I feel cheated. I was 32 and Marvin was 39 when he first got sick with ESRD and went on dialysis. This has not been an easy road for either of us. To me, however, Marvin has been cheated out of much more (though he insists that I've been the most cheated out of a "normal" life).
Sara's advice is right on the money...don't take anything for granted and count each day you spend with your spouse as special. In the past 14 years, Marvin and I have not fought or had a cross word (we've disagreed, as all couples do, but we have disagreed "agreeably" and there's the difference). We have also tried to find something to laugh about in every situation (and sometimes that's hard -- very, very hard -- to do). When Marvin got sick in 1995, I decided right then and there that I had to be the kind of wife who would have no regrets. I have been many things to many people -- daughter, sister, friend, aunt, teacher. I have not always been the BEST daughter, sister, friend, aunt, or teacher that I could have been all of the time. However, having such a sick husband has made me realize that being a wife is the most important relationship I'll ever be a part of (and, this is the ONLY marriage I'll ever be a part of -- I'm sure of that). I try to live every day so that when it's all over I can say, "I have no regrets as a wife. I did the best I could do all of the time." So far, I have no regrets, and I'm trying to keep it that way.
Does Marvin "milk" it when he's sick? Yep, he sure does (as do most men I know). But I don't let that anger me. I just chalk it up to, "Well, he can't help it. He's a man!" :rofl; :rofl;
Cheated? Yes ... but also, blessed -- very, very, very blessed. Being Marvin's wife has been the most satisfying, rewarding, important, meaningful thing I could have done with my life. As long as I feel more "blessed" than "cheated," then I think I'm okay.
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I'll chime in on the "cheated" feeling, too. Yes, I feel cheated. I was 32 and Marvin was 39 when he first got sick with ESRD and went on dialysis. This has not been an easy road for either of us. To me, however, Marvin has been cheated out of much more (though he insists that I've been the most cheated out of a "normal" life).
Sara's advice is right on the money...don't take anything for granted and count each day you spend with your spouse as special. In the past 14 years, Marvin and I have not fought or had a cross word (we've disagreed, as all couples do, but we have disagreed "agreeably" and there's the difference). We have also tried to find something to laugh about in every situation (and sometimes that's hard -- very, very hard -- to do). When Marvin got sick in 1995, I decided right then and there that I had to be the kind of wife who would have no regrets. I have been many things to many people -- daughter, sister, friend, aunt, teacher. I have not always been the BEST daughter, sister, friend, aunt, or teacher that I could have been all of the time. However, having such a sick husband has made me realize that being a wife is the most important relationship I'll ever be a part of (and, this is the ONLY marriage I'll ever be a part of -- I'm sure of that). I try to live every day so that when it's all over I can say, "I have no regrets as a wife. I did the best I could do all of the time." So far, I have no regrets, and I'm trying to keep it that way.
Does Marvin "milk" it when he's sick? Yep, he sure does (as do most men I know). But I don't let that anger me. I just chalk it up to, "Well, he can't help it. He's a man!" :rofl; :rofl;
Cheated? Yes ... but also, blessed -- very, very, very blessed. Being Marvin's wife has been the most satisfying, rewarding, important, meaningful thing I could have done with my life. As long as I feel more "blessed" than "cheated," then I think I'm okay.
Who could say it any better. :cuddle;