I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Spouses and Caregivers => Topic started by: andrea_c on April 02, 2007, 05:34:33 PM
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This has not been a great pass weeks. My husband is a dialysis patient and seems to be suffering from bloating which cause his stomach to bloat and inhibits his breathing. Plus he has a nasty cough all winter. I keep imploring for him to stop minimizing his symptoms when he visits his doctors. He cant sleep, and keeps me awake. I am sleep deprived, depressed and irritable and can think of nothing else but escaping. I dont have the luxury to sleep it off the next day, I need to get up and go to work ( I teach children)Our conversations are always dialysis based. Just awhile ago he told me that I dont care for him. I dont do anything for him. I got angry. He asked me if I was stressed from work and I told him I was stressed from having to deal with his constant health issues here at home. He said to me if he was to die today I would be the last person to know. Some thanks I get for being concerned, listening to endless health talk, and trying to contact his doctors to alert them to his strange symptoms. Some thanks for the endless emergency room visits.. Seems like my kindof caring is just not good enough for him. I really just want to go away now. I am not a martyr, I have needs of my own which he cant meet. I dont blame him for being sick, but can I be heard too?
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I think you have every right to be upset about the situation. I have gotten into many arguments with my parents, who are my "caregivers". They have commented about my constant dialysis related talk, and I have accused them of not caring or trying to understand (even though logically I know they do). I know that we can be difficult to be around sometimes. I know that being a caregiver for one of us can be very stressful and hard, and you guys have to vent and get mad just like we do. I don't envy what you have to deal with, just like I'm sure you don't envy what us patients have to deal with. So yes, you have the right to be frustrated, and you have the right to have your voice heard as well. I will add both you and your husband to my thoughts and prayers. Take care.
Adam
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ty Adam
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You have a right to feel the way you do, and I can definitely relate. One thing I have found a little helpful was to take a breather from being the "caregiver." Unless he's in a severe health crisis or something, take a few days. I found out by accident that his world will go on if you are not there to tell him what to do every step. I was very self-involved for a little while following the death of my friend, and Joe did just fine. I would recommend just being hands off for a few days at least, pamper yourself in some way, try to get him involved in conversations about movies, the weather, anything except dialysis. Go on a date with him out to dinner and a movie. Good luck. :cuddle;
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I completely agree with Sara. You need a break. Last year it got so bad here with Heph & I that I actually went to stay with my Mum for a week to give us both a break and it really worked. I know not everyone has the luxury of being able to actually leave but even just getting out and going for a walk or swim or to lunch with a friend. You need you time, where you are not the carer.
Bless you, you are in my thoughts and prayers.
H-L-L
:cuddle;
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It's just so hard when I feel like i need Little TLC too. I fel like I am his mother and that I don't deserve to complain because after all this is his illness. If I do then I am the bad guy. Depressed
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As they say it always gets worse before it gets better. If you truly love each other you will work through this. It will be tough for a while though. If you have the ability take a few days off for yourself, or hang out with friends. You need that mental break away to recollect yourself. If you can't get away at least try and have non health related conversations when ever possible, and if he can get him out of the house for a while. If he has been trapped inside except for to go to the doctors and dialysis he may be going stir crazy kinda like it sounds you are. Good luck, and I hope things get better soon.
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You need time to yourself occasionally, and there are times when a caretaker can enable someone to act helpless. Turn over some of the responsibilities to him. I think a good start would be for him to pick up the phone and schedule his own appointments. Write them on a calendar and guess what if the date has another appointment on it, pick another date. How hard can that be? It may not be much but you kill two birds with one stone. 1. Relief for you 2. Keeps him more involved with his own care plus it keeps his mind busy.
Just my :twocents;
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It's important to take some time for yourself. I am in the same situation. Not only is my hubby sick, we also take his mother to dialyisis too. They go together 3x a week.
I also take care of all appointments, work, kids, the house etc. We have been through cancer, and many other illinesses. I decided to just take one day at a time and realize we are not given more then we can handle. I take the dog for a walk just to take a breather and get myself together or take a cry. I know he does appreciate all you do for him, its hard being ill all the time too. If you ever feel the need to chat or yell at someone just e-mail me! My hubby is only 45 and hasn't been able to work in a year and a half. He just started an airplane hobby which keeps him busy when he feels up to it.
Take care,
I'll keep you and your hubby in my thoughts! :grouphug;
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He just started an airplane hobby which keeps him busy when he feels up to it.
Maybe breathing that airplane glue helps, too! ;)
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My hubby and I take car eof each other. However he does all of his own appointments by phone, and I take care of my own. We go to each other's appointments as we can depending on work schedules. A few things for you to try:
*go get a pedicure and manicure.
*go get a shampoo and hair style
*go window shopping while he is at dialysis.
*go see a silly movie or rent one.
*find a hobby you can talk to him about.
*Get him involved in a hobby. The airplane glue was a great idea!
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ty all. I have been trying to take time to myself, of course that is always an issue with him when I am not available to him. Though he is getting better at letting me out of his sight. I really just want to rent a hotel room by myself for a couple of days just to be away. Sounds selfish though.
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Thank you for starting this thread Andrea, it made me stop and look at my hubby's view of things, I too, may be guilty of putting too much on him, but i do tell him to go play golf and do stuff without me, but i will be more aware of not only what i ask of him but how i ask it as well. I hope you are finding time for yourself as well, and i remember, absence makes the heart grow fonder, so if you have a friend that is out of town, just go for a day or two, i am sure you will both appreciate each other more once you have returned. :2thumbsup; just my :twocents;
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I am very unhappy because I wrote a big long post last night in this thread and it seems to have been nuked :( *pout* I was quite proud of it.
Anyway I shall try to recover my points from last night.
First of all...
*hugs* offered
Second...
You deserve as much TLC as hubby... and indeed he is pushing you away - the person who loves him the most - with his hurtful words.
I am almost certain that he does not MEAN what he says when he says you don't care, and wouldn't notice if he died etc.. it is the frustration and helplessness of his situation talking - not that it helps you much when you bear the brunt of it and have to face this day in and day out on top of your busy job.
All I can suggest is that you try and sit down with hubby and explain that as much as he feels helpless and frustrated and angry with his situation - you ALSO feel helpless and frustrated.. You love him dearly but can only do so much.. and you do as MUCH as you can... You can't click your fingers and make it go away or fix it up, but you try to support him as much as you can, and as much as he needs your understanding and sympathy - YOU also need the same respect from him in return.
The other thing I would definitely suggest is to be able to organise a break from caring for him. Perhaps a family member or someone can step in, or your local hospital/unit's social worker could perhaps organise something to help - to give you some time to recharge and some downtime. That doesn't mean you are or want to desert him, but that you just need some time out because you are human.
I am not sure what else to say - all my witty comments were put in last night and lost :( However you have thoughts and support of everyone reading here, I'm sure.
take care...
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I am thanking you all for your words of encouragement. You can't imagine ow horrible I am felling right now, so much so that I could not even make it out to work today. I feel beat down. I do try talking to him but emotions are running high right now and it erupted into an argument. I am not sure what is wrong with him, but he is unable to lie down and rest at night because he says he is congested, so he sits up all night. He does not have a cold and says the bloating inhis stomach causes constriction onhis chest. He feels I am over reacting. I am going to call his social worker at the dialysis center because I feel something is not quite right. I have called his general physician and gastroenterologist and they suggested that if he continues to feel bad to go to the emergency room. He says there is nothing wrong but a little congestion. In any case, I am going to try to just chill out today as my body feels beat up. Thanks again everyone. Your encouragements are greatly appreciated.
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It seems to me there's a little more going on than "a little congestion" and he is clearly very uncomfortable (as we all would be sitting up all night etc). I think the social worker is a good idea but I also think taking him in to get checked out more would be a good idea.. and as for you "overreacting" - so caring about someone you love and wanting them to be as well as possible is an overraction? he shouldn't take it out on you.
I am sorry things ended up in an argument when you talked to him. Some timeout for both of you might be the best idea ...
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i have no idea what its like for a spouse being a caregiver, i have a daughter who I'm a caregiver....i thought i was the only one who had these feelings..its hard to deal with them sometimes..i have read something on the the net about caregivers...caregivers.com we go thru alote of emotions..the problem i have...i have a wonderful bf..i personally think he doesn't understand about kidney disease, or dialysis.i try to talk about my feelings..he doesn't understand..he takes it personally.when we first lived together...Jessica wasn't sick...about a month she went thru rejection,then dialysis......he made promises that hasn't kept..like learn that machine so he can hook up Jessica so i can work or just to take a break from it...thats why i quit my job...don't have any support...he seems like he working more..like hes running.i know this isn't his child...i feel like I'm losing it...i need him...but, he cant or wont handle the situation...i know i sound selfish....he seems like he getting harder and harsh with Jessica.....he gets so frustrated about her not eating...i sit down ever night pleading with her to eat...shes not doing good right
now...she losing weight again, her labs came back horrible...had problems with the machine all last week....so, it has been the 3rd time that i had to trade off the Baxter
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Hang on tight carolyn. Things will get better.
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"taking him in for a checkup" he just tells me that he is a big boy and can mange himself
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Andrea, I feel like I am butting in way too much in this thread, so please forgive me.. but it sure doesn't SOUND like he's "managing" himself too well - by that I don't mean physically so much but clearly it's very difficult for him and in turn he's taking it out on you (and perhaps others) who care about him.
This must be such a difficult situation for you to be in. :( maybe your best option at this point is to try and organise some sort of a break for yourself....
I sincerely hope things improve for you both soon.
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Andrea, I feel like I am butting in way too much in this thread, so please forgive me.. but it sure doesn't SOUND like he's "managing" himself too well - by that I don't mean physically so much but clearly it's very difficult for him and in turn he's taking it out on you (and perhaps others) who care about him.This must be such a difficult situation for you to be in. :( maybe your best option at this point is to try and organise some sort of a break for yourself....
I sincerely hope things improve for you both soon.
I totally agree with RichardMel with this, you do deserve to take that step out of reality and do a little something for yourself. He will get over any anger or any resentment he has for you doing this (if any) but in the long run, it would be beneficial for YOU every way you look at it. Take Care and Good Luck... :cuddle;
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Also, what is good for you is good for him. How can you do the things you need to when you are well below 100% physically and mentally. :twocents;
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Than you all again for helping me through this difficult time. I got through this week and it is really a one day at a timet thing.
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One foot in front of the other, < move slowly> I'm glad you made it through the week so far. Keep moving forward.
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Than you all again for helping me through this difficult time. I got through this week and it is really a one day at a timet thing.
Sometimes half a day at a time is plenty! :cuddle;
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You have to be patient with the entire situation I think. Be patient with him as well as yourself. Don't expect so much right off the bat. Think positive. Be positive! You can do anything you want, not always how you would like to, but no doubt, you can do it. :twocents;
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You can do it! :thumbup;
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Andrea, how are you doing lately? Have you been able to take time off for yourself yet?
Is your husband's swelling/congestion getting better?
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Words
Benign is a beautiful word
There should be a way to pack more relief into that word.
So many weighty words that don’t really hold anything down.
So many words that float in the air
That don’t really mean anything at all.
Remission-now that is a weighty word that does not weigh enough.
Floating words that make your stomach
Rise up into your throat.
Unreal words that drift past you
In the antiseptic air of the doctor’s office.
Cling like germs
Multiply like a virus
Overwhelm like a rampant disease.
Slide down your ear canal
And whisper about things left undone.
So many words it is hard to catch them all
And keep them in your head
And deal with them.
What words will you miss?
“Daddy watch this”
“Once upon a time..”
Mom! Mom! Mom!
The little voices that creep through daily life
Become still and die slowly.
Will the words hover in the air?
Will you hear them?
Will you be there?
Other words lend weight and hold you down.
Chemotherapy, radiation, dialysis
Hold this word tight:
Fight.
Hold this one even closer:
Love.
Remember they are only words
BE.
By Jbeany and K Soto
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:2thumbsup; What a wonderful poem! Words, never thought of them as having weight! Great analogies~~~~
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HI Andrea,
Hope you are feeling much better. It is almost harder to live with someone else's health problems than your own. I have had a number of surgeries over the past couple of months and I would much rather go it alone than have my husband with me because I am fiercely independent and I don't want that taken out of my control. The problem with that is that you don't get any support at all if you just feel like taking a day for yourself and chilling out. Because I am so independant I feel guilty because my husband questions me when I say I am going to stay in bed for a couple of extra hours on a Sunday. I have a huge job, I work minimum twelve hours a day and I hate that people feel sorry for him because HE has such a huge problem in his life because he has a sick wife. I am not the one who gets a two-hour nap every day because I work from home. I am the one who works hard, keeps the house clean and I pay the mortgage. So you see it can goe both ways. You get no thanks for coping well.
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No one has it easy. I often wonder how my husband gets through his dialysis treatment. He says he fels alone and no matter how much I am there for him, it is still such an alone procedure. Hehas to deal witha ll the consequences of dialysis. The ironic thing is that I often feel very much alone in dealing with all the changes associated with this disease. I value all the advice and support I get from folks here. I try to steal time for myself when I can. Sometimes I feel there's a mourning procedure with dealing with a sick relative. You realize that some of these dreams and hopes you had with that person have died. It's not easy to adjust. I continue to take one day at a time. I try to value each day. I think most of all I want to be recognized as in the struggle with him as well.. If I say I am nbot well , I want to be heard. I do not want him to answer I feel worse. I would like someone to actually ask how I am feeling and care enough to listen should I answer my true feelings. I don't wish to be persecuted, either by others or myself if I should say I am sick of dialysis and everythign to do with it.
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andrea, i know how you feel...sometimes i feel like i cant say anything..i feel like i am being selfish....
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I use to think that I was all alone with my emotions, but I see from folks on here that we are all feeling the same way at times
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I use to think that I was all alone with my emotions, but I see from folks on here that we are all feeling the same way at times
Andrea, i hope you never think your alone, especially when you have all of us here :grouphug; In case you havent noticed, we are a pretty darn good support group ;) and even better, we have become one big family, and we are always concerned when we feel one of our family members needs us, We are here for you :grouphug;
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ty :-*
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Things will get better, just hang in there. I'm glad you find comfort from the IHD family.
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I had a fight with my husband last week. We don't fight much. I think we have a pretty great relationship and I couldn't have asked for a better man than Robin. In fact, if I did ask God for my perfect guy I would have ended up with Robin. Anyway, in our fight he blurted out about "how could I NOT forget you're on dialysis? Everywhere I look there's something - boxes, garbage, noisy cyclers" I said, "great. it's nice to know I'm such an inconvenience to you". We've been together almost 8 yrs. I've been on PD for 10. He's never had a break from being my caregiver. No holiday. No weekend away. It's always about me. Me. Me. Me and my damned health. I can't do anything about it. Neither can he. Sometimes I wish he'd just leave me and find someone without health problems. He looks like a model. I look like s**t. I think he deserves better. But that's just me when when I'm having a "poor me" day. I never stop to consider how he feels about it all. I never stop to consider his needs. This topic has certainly made me open my eyes and realize how selfish I have been. Thank you for posting it - it's the wakeup call I've needed.....thank you. :thx;
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I had a fight with my husband last week. We don't fight much. I think we have a pretty great relationship and I couldn't have asked for a better man than Robin. In fact, if I did ask God for my perfect guy I would have ended up with Robin. Anyway, in our fight he blurted out about "how could I NOT forget you're on dialysis? Everywhere I look there's something - boxes, garbage, noisy cyclers" I said, "great. it's nice to know I'm such an inconvenience to you". We've been together almost 8 yrs. I've been on PD for 10. He's never had a break from being my caregiver. No holiday. No weekend away. It's always about me. Me. Me. Me and my damned health. I can't do anything about it. Neither can he. Sometimes I wish he'd just leave me and find someone without health problems. He looks like a model. I look like s**t. I think he deserves better. But that's just me when when I'm having a "poor me" day. I never stop to consider how he feels about it all. I never stop to consider his needs. This topic has certainly made me open my eyes and realize how selfish I have been. Thank you for posting it - it's the wakeup call I've needed.....thank you. :thx;
Girlfriend, i know exactly what you are saying, been there with my hubby too, except i am the one bitching about everything and he is the calm one. He makes everything seem so easy "lets go here, lets go there" little does he know how much my body hurts to do much of anything anymore, after letting him get his way for so long, i just cant take it no more then i have the mental breakdown. It sucks, it totally sucks, but i usually feel better after i "blow up" i am sure he feels like shit, but i feel better and after all, isnt that all that matters, how WE feel ;) :P My hubby is a Godsend and i do try to do things i know i shouldnt. Why cant you guys go on a mini vacation? We do. We pack up the cycler, all the supplies and just go. Yeah, it's a pain in the ass but believe me, it is nice to get out of your comfort zone and have a little change of pace. Try it, it will do you a world of good my friend, Good luck to the both of you... :cuddle;
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Goofynina you could come to WI. You and Sam could stay at our cabin for free. It would just be the traveling expenses.
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Goofynina you could come to WI. You and Sam could stay at our cabin for free. It would just be the traveling expenses.
Thank you Sluff, that is so kind of you to offer your cabin but my idea of camping is staying at a Howard Johnson's lol, I do love the wilderness but wouldnt want to sleep in it ;) Thanks again amigo :beer1;
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it aint easy :wine;
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Goofynina you could come to WI. You and Sam could stay at our cabin for free. It would just be the traveling expenses.
Thank you Sluff, that is so kind of you to offer your cabin but my idea of camping is staying at a Howard Johnson's lol, I do love the wilderness but wouldnt want to sleep in it ;) Thanks again amigo :beer1;
This is better than a hotel, I have running water, heat, electricity, airconditioning, kitchen, Bathroom, 2 queen size beds.
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Sounds better than the Howard Johnson to me!
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Goofynina you could come to WI. You and Sam could stay at our cabin for free. It would just be the traveling expenses.
Thank you Sluff, that is so kind of you to offer your cabin but my idea of camping is staying at a Howard Johnson's lol, I do love the wilderness but wouldnt want to sleep in it ;) Thanks again amigo :beer1;
This is better than a hotel, I have running water, heat, electricity, airconditioning, kitchen, Bathroom, 2 queen size beds.
Tempting, verrrrrrrry tempting, ::)
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Goofynina you could come to WI. You and Sam could stay at our cabin for free. It would just be the traveling expenses.
Thank you Sluff, that is so kind of you to offer your cabin but my idea of camping is staying at a Howard Johnson's lol, I do love the wilderness but wouldnt want to sleep in it ;) Thanks again amigo :beer1;
This is better than a hotel, I have running water, heat, electricity, air conditioning, kitchen, Bathroom, 2 queen size beds.
Tempting, verrrrrrrry tempting, ::)
And you would get to meet the SLUFF. Now all you need is about $ 950.00 for gas a couple of motels to and from which will be about $ 300.00 and then you have to eat at least 1 good meal each day along the way 2 people about $150.00 and then an oil change along the way would be
$ 25.00 Wear and tear on the expedition about $100.00. Total cost $ 1425.00 well worth it to meet Sluff. ;)
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Goofynina you could come to WI. You and Sam could stay at our cabin for free. It would just be the traveling expenses.
Thank you Sluff, that is so kind of you to offer your cabin but my idea of camping is staying at a Howard Johnson's lol, I do love the wilderness but wouldnt want to sleep in it ;) Thanks again amigo :beer1;
This is better than a hotel, I have running water, heat, electricity, air conditioning, kitchen, Bathroom, 2 queen size beds.
Tempting, verrrrrrrry tempting, ::)
And you would get to meet the SLUFF. Now all you need is about $ 950.00 for gas a couple of motels to and from which will be about $ 300.00 and then you have to eat at least 1 good meal each day along the way 2 people about $150.00 and then an oil change along the way would be
$ 25.00 Wear and tear on the expedition about $100.00. Total cost $ 1425.00 well worth it to meet Sluff. ;)
TSK, UGH, you HAD to break it down didnt you :(, oh well, the thought was nice while it lasted :P lol, do you realize what i'd have to do to earn that kind of moolah :o ::) (omg, i just thought of something Boss would've said to that comment) ;D
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I had a fight with my husband last week. We don't fight much. I think we have a pretty great relationship and I couldn't have asked for a better man than Robin. In fact, if I did ask God for my perfect guy I would have ended up with Robin. Anyway, in our fight he blurted out about "how could I NOT forget you're on dialysis? Everywhere I look there's something - boxes, garbage, noisy cyclers" I said, "great. it's nice to know I'm such an inconvenience to you". We've been together almost 8 yrs. I've been on PD for 10. He's never had a break from being my caregiver. No holiday. No weekend away. It's always about me. Me. Me. Me and my damned health. I can't do anything about it. Neither can he. Sometimes I wish he'd just leave me and find someone without health problems. He looks like a model. I look like s**t. I think he deserves better. But that's just me when when I'm having a "poor me" day. I never stop to consider how he feels about it all. I never stop to consider his needs. This topic has certainly made me open my eyes and realize how selfish I have been. Thank you for posting it - it's the wakeup call I've needed.....thank you. :thx;
Wait until something happens to him and you have to take care of him. Remember marriage is a two way street. I know he gets frustrated with you and you get frustrated with him, but....
I watched my husband who has been through hell and back with me, stop by the bed and take off his artificial leg, turn and hop over to the bed, then have to stop, and turn to get into the bed, the lie down and back himself onto the bed. Then struggle to put the covers over himself. I was in tears when I realized it was less than a year ago he jumped in and out of bed normally with two good legs. *SIGH*.
So it works both ways. He has supported me through dialysis and I have supported him through his amputation. Both of these things are never going to go away in our lives, so we have to deal with them.
Have him take a break when he needs it and give yourself a break when you need it. Most of all get a grip and keep on going!
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Good advice, Kitkatz.
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The problem with my husband is that he has a problem with being an inpatient in the hospital......he almost didn't go in for the kidney biopsy since that requited an overnight stay but lucky for me, he changed his mind at last minute and he ended up getting a private room which we didn't ask for nor expected.......he knows he won't always get that and God forbid he has to go in for kidney related issues, he may not cooperate and go in and that is my biggest fear which puts me in major depression........
I know one thing, if anything happens to my husband, I will go nuts........
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I know one thing, if anything happens to my husband, I will go nuts........
I remember when I was first told that I was in stage 4 and it was a shock. I felt OK and thought that I would live forever. Give it some time, things will start to settle down and stay in touch with all the members of this forum . They have been through it and it is no fun but you will see that life does go on.
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The problem with my husband is that he has a problem with being an inpatient in the hospital......he almost didn't go in for the kidney biopsy since that requited an overnight stay but lucky for me, he changed his mind at last minute and he ended up getting a private room which we didn't ask for nor expected.......he knows he won't always get that and God forbid he has to go in for kidney related issues, he may not cooperate and go in and that is my biggest fear which puts me in major depression........
I know one thing, if anything happens to my husband, I will go nuts........
I had problems with hospitals, doctors. My Mum died a couple of years before I got sick. She had a form of leukeamia and also lupus, and was in and out of hospital for about 5 years with
the last six months of her life being in hospital. I was very stubborn at the start of my illness, and being in the words of the medical profession "non-compliant". We have to get
over our fear, there are no options. And for me it did take time, I stopped myself going on to dialysis for a very long time, when looking back I probably should have been on it a lot earlier than what I was.
So be there for him, and support him all you can, but also there are alot of things he will need to work out as an individual, with kidney disease comes a lot of life changing issues.
fear of hospitals and sometimes it just takes time after all where else can we get help for what we have.
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I do not have a caregiver. Nor do i want one. The first time i was on dialysis my wife divorced me yes she did tell me it was because i got sick and interupted our lives. I never talked about it with her i just took care of myself. I came and went to dialysis by myself. She used to get so freaking mad when she would see me after dialysis that she would curse me out about it. I would wait out side my house and watch for our bedroom light to go off then i would go into my house. One time a week after the transplant i got a very high fever 103 she got so mad she jumped out of bed and said "Bud, [she never called me keith] i am so tired of this shit. I then asked her to call next door and he carried me down to the car. Once in the hospital she changed cause people were around. The more i see what happenes to a person on dialysis the more i see why she left me. Some people will push their caregiver away because they feel they are putting too much on them. When the person on dialysis is a man the pride will become his down fall.
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keefer, what happened to you on dialysis is no reason or excuse for her to treat you the way she did.
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Thank you Sara. The scarest thing i found out was what i assumed was going on WAS going on. I thought i was living in a lifetime movie. When she told me this was at a very vulnerable time in her life. She had left her new husband because of his daughter. I was able to have my kids for a few weeks because she wasn't living at home. She was on the phone crying and telling me how much she loved this guy. We were divorced for about 5 or 6 years at this point. I said "Look Wendy you have got to try and pull yourself together. The kids are very worried and i can't lie to them anymore." She claimed to not have a place to stay and was staying with some couple she new and felt out of place. I told her i only had a little money but was willing to put her up in a motel for around a week. She stared to sob and said you would do that for me after what i did to you? I said yes wendy i am not like you. You are the mother of my children. They need you. It was then she spilled her heart out about my illness. No matter how much guilt or anger or whatever she felt i would never do that to her ONLY because she is the mother to my children.
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He gets on my last nerve at times like last night and this morning......at dinner he said he didn't want to do the bronchoscopy and that is not even an overnight stay in the hospital but all because they won't put him to sleep he thinks it will make stir crazy when they keep saying they do give something to calm the nerves........I also have to add he has not been the same since his accident in 2002 and much of that is because he cannot work so now his pride is gone to shreds among many other things and then he tends to have this negativity.........I finally talked him into it and I keep telling him he has to be compliant if he wants to heal......I mean the doctors keep saying keep the appointments....now next Friday he is scheduled to see the rheumatologist which I just found out yesterday and I already have an appointment for that day which was scheduled months ago and now I have to change that which I don't have a problem with........
He keeps saying he loves me which I know already and he tells me how much he appreciated me and I keep telling him all I want back in return is for him to be compliant.....he has to work with the doctors like I am.......and these are his doctors.........now how much time I miss off work when I take him to appointments and sometimes I can make it up but not always.....I haven't even been there long enough for sick pay and personal days.......I am just thankful that my boss once was a caregiver to many in his family or I would have been fired by now.......
Then this morning, he is depressed....I have to go run an errand and I tell him to come with me just to get out of the house and he says no....WTF........I then let him have it and so he decided to come.......I mean I don't mind looking after him even it has means I change my own lifestyle but he can only help himself as far as dealing with his depression and other feelings of trying to be positive.......I make it a point not to even talk about dials or his disease with him since we have to have a life......
Am I being selfish...sorry if I complained.........
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I know this about myself: I am a great nurse... for about 3 days.
After that it's some good days, some bad days. I wish I was more patient, stronger, more willing, calmer, more cheerful, and less opinionated.
But I am who am I and I do my best. My husband (3 back surgeries, hip replacement, no relief to chronic pain) would like a lot more caretaking, but I try to make him rely on himself. A few years ago we went to a pain management program at the Mayo Clinic in MN. The counselor for the family group told us "Have expectations of the patient. Encourage them to do for themselves. You take away their dignity by doing everything for them like a child. They will begin to doubt their worth to the family if you diminish their role as a parent and partner." At first I thought this was cruel, weren't these patients suffering enough? But as the weeks went by at the Mayo I could see how it made sense. But it's hard, because when someone is sick, and they are just feeling like giving up, you don't want to make them do things. One day a woman came into the family, wearing a big smile, and said "My husband put his own socks on today!" She told us it had been 9 years that she had done it for him. She was so happy, because she could see how proud her husband was of achieving this goal. The key is to be realistic about what they can do. When it came to Jenna it was harder for me to let her struggle. She was 18 when she started dialysis, a child in my eyes. And she was so tired all the time. I am so grateful that she got a transplant, because she is already branching out, trying new things, beginning her life. I don't know how the caretaking would have gone if there wasn't that option. I guess at some point I would have had to toughen up, let her make her own way, but after 3 years of dialysis, I still couldn't.
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I like to read the posts in this section. They have all helped me in so many ways. I don't know how you all do it. I admire you and hope and pray that you all find a little peace in your situation. I think in allot of cases when a man is involved and becomes ill with a chronic illness he becomes helpless and angry. He will take out every little thing on his spouse. Most of the time they are stupid things. I know i would sit after a fight with my spouse and kick my self for taking it out on her. In todays world with separation and divorce so prevalent we may feel that you will properly leave when the chips are down. Men sometimes forget there vows. Having renal failure and being on dialysis is a strain on any relationship. We become insecure. I can just hear them say to themselves "Well she won't love me anymore. I am not whole. She will leave me. The paranoia is overwhelming. In many cases i think the caregiver can be pushed away so far there is nothing left for them or her. The guilt is another thing i think that needs to be addressed. Try your hardest not to be guilty. It's not your fault. You had nothing to do with his renal failure. I would if you could get away for a day and do something for yourself. I myself am alone. I have chosen this because i just don't want to put this on anybody. It wouldn't be fair to them or me. I wish i could give you some sound advice. All i can do is applaud you for your perseverance.
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thank you
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I was reading these posts, and feeling mixed emotions. I have found myself talking to much about dialysis, but when my mother, sister, etc calls me and asks "how are you doing" If i lie and say "oh great" they would know my voice sounds the other way around. I feel frustrated, many times hopeless and I obviously know I am not the only one in this world feeling this and more....My 69 years old father helps me to much, I feel in extreme tired, he would go to the store to bring groceries, so lot of cleaning in this that is not my house. I heard him talking to a friend on the phone, I know he is leaving to other state soon, I know I could not keep him by me forever because he needs to work for himself and I cannot even offer him house and food, I live with my dissability check and we all know how much is that ...when i heard my ex husband telling me as yesterday "come to see this condo. is cheap just about 100,000 I sell my house and help you out to pay the downpayment,, then you work a part time to pay what is needed" I just think to myself how to do all that when I have not done it before and when I was not as sick as now? How could I get even a bit energy to work even for some cash when I feel tired even when i sit here front of pc? Besides all that I do adore my dogs, I have been rescuing stray and rejected ones. The ones I have are just like my own kids. I cannot see my life without them, I would say the most that is causing me depression is to think where my little ones would end up if mom is not around... My family think I am strong and I try to keep a smile on my face, but inside me is something else. I do understand the ones that take care of loved ones as the ones on my side. This is life, we get what are meant to get and could not change it. I do applaud all of you reading this post and taking care of our illness and I do also embrace my brothers and sisters in illness, because we did not decide to bare this condition, it does change our life 100% and not necesary for better...