I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Spouses and Caregivers => Topic started by: TiffanyJean on July 14, 2009, 07:52:04 PM
-
So I really love my hubby, but i'm so tired of caring. I feel like i'm the only one that cares about his health, getting a transplant, all of it... It doesnt even feel like his mom, or the rest of his family cares. I do everything. I set up appointments, i refill meds, i set up his pill containers. i lost a great job because of all that i do for him. I love my husband, and really dont mind doing everything in my power to help him, to take care of him; i just want him to want to do everything in his power to take care of himself. i'm so tired of doing it all.
its gotten to the point where i on a fairly regular basis just want to leave, because then i wont have to deal with all of this. [i feel guilty just thinking/typing it].
what do i do? do i continue to keep dealing with this even though i hate it?? is it wrong for me to want to leave? is it wrong for me to leave? how can i make him want to take care of himself? how do i get him to understand that its not just his life this has affected? how do i get him to understand that im tired of dealing with all this?
i feel like this is so offensive - so rude. but this has become an obsession for me all i think about all day is kidneys, organ transplants, and how hes feeling. i just feel so alone in this, like im the one that is sick, like everyone else around me is just like sitting back and twiddling their thumbs till he gets a new kidney; which frankly at this exact moment in time i really feel like he dosent deserve!!! :stressed;
please caregivers - wives.... please.... how do i keep choosing to stay with this....
tiffany jean
-
How about from a patient..........
You care so much, you are in thankless, unpaid, job.
Taking care of all the things that you do, there are no words to thank you.
We feel overwelmed sometimes that we don't know what to do to make ourselves cope
with all of this. You show so much love just by taking time to learn about all of this.
This board is full of care givers like you. Sometimes just reading your posts of frustration makes me realize
what I put my loved ones through.
Love you Tiffany Jean! :grouphug;
-
As a patient and a caregiver I have been in both roles. After hubby had his accident at work three years ago I suddenly went from patient to the role of caregiver. It was very interesting trying to meet his needs and my needs as people who needed care at the same time. There were days when all I did was run around in circles and try to cope mentally with everything. Now we are like the two old folks walking down the road leaning on each other to help keep each other up and moving.
I know you are saying, but you are strong and can do this stuff. Nahhhh. Most of the time coping around here is because i am probably too stupid to know better. Sometimes it is a matter of putting your head down and doing what must be done.
Then:
Take some time out for you.
Take a walk.
Just Breathe (Thanks to TheWife)
Plant something green
Go to a movie and have popcorn and a soda, maybe a hotdog.
Come to IHD.com and tell us about it.
Find time to play everyday. Color in a coloring book, use model clay, play a game, go hopscotch, roll down a long hill.
Take up a hobby that is just yours alone and do it regularly.
Be silly- wear a red nose, speak in a funny voice, hold your breath.
-
Tiffany Jean,
I do so feel for you. I was carer for my husband Barry who had prostate cancer for 7 years, he died 5 years ago and now I'm carer for my Dad so it feels as if (at 51) my life is passing me by.
On bad days I feel really down and depressed and could just walk out, move to Australia, even wish I could die......anything to be free. But I know that the best thing I can do for Dad and myself is to care for him as best I can while he is here.
When Barry died I had no regrets, no guilt, I knew I'd done absolutely everything I could, yes that had meant giving up a good few years of my life to care for him, to take him to all sorts of places looking for that cure that never came, never having a holiday or time to myself (and now I'm doing it all over again) but I loved him and he loved me and I did for me as much as for him. It meant that although I was devastated when he died and will always miss him, I have no 'what ifs', I have a totally clear conscience and that is worth a lot and helps the healing process.
I know you are in a somewhat different situation as hopefully your husband will live for many, many years, but what I'm trying to say is if you love him then caring for him is something you may have to do for your own future wellbeing. I'm not sure if I've explained well, I hope you can understand what I'm saying - kind of 'do it for you as much as for him'.
Come here and rant when you need, you will always find support and understanding, I wish I'd had a site similar to this for carers of cancer sufferers as I could have done with the support then too.
Sending you and all other carers a big hug cos I know how we all need those :grouphug;
-
Are you able to talk to your husband really honestly about how you feel? Maybe there are things he could take over now that he's just so used to you doing that he doesn't even think of? Is there a particular reason he can't do his own pill container? I know that's a tiny thing, but I think it could make quite a difference. Maybe think of some small things like that and suggest that he does them. Big things may well be too much for him to cope with.
Thinking of you.
-
I am not quite where you are but I am headed there. I know more about CKD than my husband. I keep track of all his tests. I don't know one way or the other whether he is interested in knowing or not. We see his neph next week and I plan on telling him I am willing to be a living donor but I still don't know if Jim wants a transplant. So far he still does 4 volunteer shifts per week and he takes the bus. It has been very hot in So. Cal. this week so these trips take every bit of energy he has. He also still does at 75% of the house work and nearly all the cooking. So I count my blessings on that! However he is soooooo depressed. I have no control over his attitude and honestly don't know how to deal with it. Guess it is time to go back to my counselor. I also have a massage every 4 weeks and also have acupunture. I do this for ME and consider both of these 'mental health visits'. And I have a very big support system. I just have to pick and choose who I share info with.
I was going to post here today anyway and do my own rant.
Here goes.....having a chronic illness that makes you feel like crap isn't a good reason to be rude to people and lash out! I listen to the rants and to the opinions you share even though I don't agree and won't tell you I don't agree because then I hear about that too.
Tiffany Jean...feel free to contact me personally if you want to have a one on one.
-
My sister is really my mom's main caregiver. She does all of her paperwork, pills, appointments, housing issues, shopping...absolutely everything. I help with the shopping and appointments. Sis has two jobs and a family. Her stress level is probably where yours is at.
I try my best to give her a break. She never complains, all's she does is ask us to spend time with mom. That's not an issue with me, but my brother is another story.
I guess my point is my sister doesn't have a choice in the matter. If she didn't take care of my mom, she would not be as well as she is. When circumstances make you the main caregiver, there's not much you can do. Maybe you think you have a choice because you are just married to him and many people divorce or separate.
The burden of caring for someone when you are so young is overwhelming. My sister also sets up an aide and nurse to come three times a week for my mom. Can you get that help? The aides are there to do housework and mom is friends with all of them.
Maybe your husband has to take on more of the responsibility himself. I apologize as I am not current on everyone's situation, but is there a reason he cannot do his pills or schedule appointments?
Not only is it important to take a break, but it is important to not do too much when the patient can do it themself. My sister gets so upset when mom is alone. I have to remind her that it's not possible to have someone there every day and that mom is fine.
-
Tiffany Jean, I'm sorry you are in this situation. Your husband sounds depressed. I don't think there is a way to make someone care about his health. I suspect that deep down, he probably does care. I have gone through episodes where I have my husband do everything for me - I just don't want to deal - but to be honest, it makes me feel worse when he does that. Taking control of one's own life and health can be a wonderful feeling, even in kidney failure. The more I do for myself, the more I want to do for myself. I think pushing him to do the small things, like others suggested, like setting up his own meds, and making his own appointments, is an important first step.
Is your husband approved for transplant? This is the type of behavior that would tend to get a patient screened off the list until he gets his act together. (I do not agree with many parts of this screening process, just making an observation that it is the reality of trying to get a transplant.)
I don't think anything you said was rude or offensive. This situation is totally unfair to you. Who wouldn't want to leave?I hope you can have a non-confrontational talk with your husband about the stress that you are under and that he needs to start taking an interest in this, for both of your sakes. You might also talk to other family members, to see what type of help you could get there. Maybe they do not realize you are struggling. You probably put forward such a competent attitude that they would never guess. (People can be so clueless sometimes.)
Good luck! I hope things ease up for you soon. :cuddle;
-
Tiffany Jean, :cuddle; :cuddle; I have been with Otto since we we're 18 and I always wanted to do things for him when he 1st got sick. Now he's so use to me doing EVERYTHING it can get a little overwhelming for me, it's my fault for letting him become soooooooo dependent. Since starting home-hemo he loves nothing more then to make up an excuse to "skip" not understanding my "freakouts". There are days when I'm ready to help him throw the machine out the window since he has made it very clear to me he's done, he's just doing it for me and the kids. I just wish he could step back and try my shoes on for awhile, I know dialysis SUCKS, but without it he's dead. This site is the place to vent for us caregivers also, so vent away when you need too. :grouphug; :grouphug; :grouphug; :grouphug;
-
I love my husband, and really dont mind doing everything in my power to help him, to take care of him; i just want him to want to do everything in his power to take care of himself. i'm so tired of doing it all.
Tiffany Jean,
That line says it all.
You are suffering from serious burnout. All of us go through it at one time or another. Richie is probably depressed, too. It is really hard for either of you to break out of that downward spiral, but sharing your frustration is a good first step. You have shared with us, and I hope you will continue to do that.
I imagine that it would be hard to share that sentiment with Richie, because you realize that it will make him feel guilty about what his condition means for you. But you all really should have a heart to heart talk about how his condition is affecting both your lives. Richie may not realize how much this affects you, too.
Another thing is that he may actually feel better if he takes more control of his care. It is empowering to have personal control instead of relying on someone else.
I am a caregiver, but I don't have as much responsibility in my husband's care as you do. Plus we are older and have a long history behind us.
I think that Rose gave you some deep thoughts to consider. You may be feeling like walking out, but how would that affect your self-esteem? Could you look yourself in the eye and be happy about that decision?
It is tough. And life isn't fair. And it sure makes us want to scream sometimes. I wish I could help more.
Aleta
-
:grouphug;
I was trying to be my Gram's primary caregiver after her recent stroke. I had to pull back and get some help - I was making myself even sicker. It's a constant mental stress, and that plays havoc on the body. It's not wrong for you to want out - that's your self-preservation instincts kicking in. Can you ask for help from his family? Have very specific tasks in mind, and see if they would be willing to pitch in, as in "Can you take him to this appointment? I really need a couple of hours to myself." Down time is tremendously important to your own well being.
-
I've just sat and read through all these letters and it as if I had wrote every one of them. I feel that John's illness is mine and I am the one suffering from it. I'm looking for answers from every one, trying to make me stay with John and not walk out. If I talk to anyone about John when they ask how he is I land up crying. I've had enough and so has he. But we must go on that is the only answer.
So what I am saying is you are not alone in how you feel, the only difference is you are so very young and still you must try and find time for yourself. Yvonne
-
I know how hard it is to be the main caregiver. My husband also did not want to take an active role in his care, he just would not do it. The only thing I can say is that I will never regret the sacrifices I made to be there for him....He spent the rest of his life with me... and now that he is no longer here, when I look back at the last few years, I am just proud. I know your probably so tired, not just of the tasks, but of the mental stress it takes to be there and learn everything, and between diet and medication its too much!!! I hope you can find some time to be nice to yourself too, jbeany is so right about the downtime being crucial to your wellbeing. Dont forget to take time to continue to be a couple either. I know, ITS TOO MUCH!!! but you can do it!!!!
-
As the one with kidney disease, I will say your husband needs to take more control of his health care. I do everything -- appts, medical bills, prescriptions, and everything regarding the household. Needless to say, the house isn't as clean as it use to be!! I may be too independent, but I need to know what I am dealing with first hand. Now, my sister's husband has liver disease. She does everything for him. Makes all his appointments, fills his meds, talks to the doctors. When they go for an appointment, he tells the doctor "talk to her, she knows more than I do". She is sick and tired of him not caring enough to do the little things for himself. So, maybe you can slowly have your husband take over some of the little jobs regarding his health. Sometimes I wonder if it is a man vs. woman issue. But,whatever it is -- you don't need to do it all. I am sorry that you are dealing with this at such an early age. I know he feels lucky to have someone like you to be with. This is a tough disease for the family to deal with. Take care of yourself :grouphug;
-
THANK YOU EVERYONE!!!! So I've not replied mostly because every time I read through all the posts, id start to cry - and then once id try and type anything i just ended up losing my train of thought, and so instead of replying to this, i just compiled everything i wanted/tried/your suggestions into a very long letter/speech kind of thing and then talked to Richie about everything.
I cant say it enough - i am so grateful for all your kind words, and suggestions. Richie really had no clue (men) - no offense but mostly you all are clueless :) ) he thought that things were ok, that i wasn't struggling.
So now he is doing his pills (with my reminder - hey Rome wasn't built in a day), and we are working together on the rest of life. :) The most unfortunate thing about our situation is that although we are great friends, and had lived together for 2 years before we were married, we were only married for 3 months when he was diagnosed; so we are still learning how to depend on eachother, and be a married couple instead of two single people in a relationship (never really knew that there was a difference, but now i understand what all the adults in my life were talking about!)
Thanks a bunch everyone!!
TJ
-
:clap;
Wonderful, good going for you!!!
-
Hey darling. I am not having a go at the boys but I really think women handle these situations better than men. As we all know, man flu is much worse than any flu we might get! In saying that there are many inspirational men on this site...Zach, RichardMel and the list goes on.
Your boy has to start taking a real interest in his own health situation. The more you do for him the less he will do for himself. He needs to get into a routine and show some consideration for you. I don't expect my husband to do a thing for me. I did my training on my own, I do my dialysis at 3.00am in the morning because I am working full time and I am off the machine, done and dusted and finished before he gets up. I exercise for and hour every morning after I get off dialysis and play golf when I can. Most of the people I know don't even know I am on dialysis. My husband doesn't have any burden from my disease at all. If he did, he would walk out in a heartbeat. What I really hate is that when he wants to take a day off work, he blames me. Says he has to stay at home with me because I am having issues with my dialysis. Gets sympathy off my back. I hate it!
You should not be expected to carry your husband's burden on your own and put up with his moods in the process. It is a huge effort to do what I do and I am afraid I am not very sympathetic that your husband expects you to take all the burden. It is really selfish. You have your whole life ahead of you and you can't set a precedence otherwise, not surprisingly, you won't stick it out. Your husband is only your responsibility to a degree. At the moment you are taking on 100 percent of that responsibility.
I am the extreme and sometimes I push myself even when I feel disgusting. But it is all about normality for me and it wouldn't be normal for my husband to start turning around doing stuff for me. For his own mental stability and wellbeing you husband has to take an active interest in what is happening to him. I say it again. It is totally unfair on you and why should you waste your young life if he won't meet you at least halfway. That is too much to ask of anyone. He needs to be aware that this hasn't only affected his life but yours as well.
You should DEFINITELY go back to work! You have to have time away from the problem and if you are not there to do things for him, he will have to do them for himself. By all means, love him, be there for him but don't throw away your whole youth for him. You might be married but you still have a right to have your own life as well. If your husband doesn't start considering you then I would be 100 percent behind you if you wanted to walk. You are too young to give up YOUR life to this disease. You may think I am a little harsh but when I was your age, there is no way that I could or would have wanted to deal with this in a partner if they weren't prepared to take responsibility for their own condition. I certainly would not have left a job I loved. He won't thank you for it. Go back to work and have some fun! That's an order. xxxx
-
I work as a medication aide and CNA at a nursing home. The pharmacy sends cassettes for residents medications with eight slots in them , one pill for each day and an extra in case one gets lost etc. Also the cassettes are color coded for the time of day it is taken. There are also cassetes for PRN medications (take as needed such as Tylenol etc) The last year of my daughter's life (2006-2007) I asked the pharmacists if he could set up cassettes for her and he agreed to do this. She had so many medications to take. Beings I worked at the nursing home he just sent her medications along with the residents and I picked them up there and left empty cassetes. This was a great time saver for both Sarah and me and relieved some stress.
-
hey everyone, so things have started to work a bit better. we are starting to work together more and things are slowly getting better.
Lucinda even though i probably will never leave him, its nice to have someone (other than my mom) say that its understandable, and reasonable to want to leave and not be always the only one taking care of everything for him. I've pretty much gone hands off... doing only things that he must not do, like carrying the heavy bags and such.
here's hoping that things continue to improve!
TJ
-
Good to hear TJ. Sometimes it just takes time to get used to the things.
Sending love to you and your hubby...
-
I know just how feel. Like YOUR OWN life is being sucked out of you or has been taken away right? Secondary. It's exhausting mentally and that turns into physically. Stress sure takes it toll. I too am constantly making sure his needs come first. I feel so bad for my husband but I don't tell him that. Sometimes it really hits me that he is on a life support in reality and that is darn scary. The way you take care of him and prepare everything is great. I think we as women have this natural instinct to want to take care as we do because it is somewhat maternal. Do you take time out for yourself too? Please do. Your self esteem is important to you as well as your husband. You deserve to be, and feel the best you can about yourself. Keep a social circle of your good friends. Enjoy time out. I often wish my husband's family were more involved in at least understand what really goes on.I feel all the time this whole thing is on me only and that's a lot. I just wanted to let you know that I believe everything happens for a reason. Reasons we may not understand right now. Al roads lead us to where we should be. Take a deep breath when you need it an s-l-o-w-l-y exhale. Take care.
-
:grouphug;
-
Hi Tiffany Jean,
I was not going to reply because I am a patient, and thought you might not want to hear from another one (!), but I have been thinking about your post constantly since I read it. I think you have opened up my mind to what a caregiver must go through. I do not have someone like you now, but have in the past and am compelled to write a long thank you note now.
I am glad to hear things are getting better and your husband is starting to help with his pills, etc. Keep pushing him to do that...I think that will help him feel more in control and hopefully you will feel like he is more of a partner in this rather than your patient.
Also, have you thought of having some time with him, a movie, a long talk, a meal or something, where dialysis and kidney disease are not to be discussed? I do this occassionaly with my friends, a day out where I do not allow myself to talk about anything kidney related, and it really does help me feel more normal and it gives my friends a break, even if only for a couple of hours.
I wish you the best in getting some balance back in your life, and thank you for showing me how amazing caregivers are!
-
As a patient and a caregiver I have been in both roles. After hubby had his accident at work three years ago I suddenly went from patient to the role of caregiver. It was very interesting trying to meet his needs and my needs as people who needed care at the same time. There were days when all I did was run around in circles and try to cope mentally with everything. Now we are like the two old folks walking down the road leaning on each other to help keep each other up and moving.
I know you are saying, but you are strong and can do this stuff. Nahhhh. Most of the time coping around here is because i am probably too stupid to know better. Sometimes it is a matter of putting your head down and doing what must be done.
Then:
Take some time out for you.
Take a walk.
Just Breathe (Thanks to TheWife)
Plant something green
Go to a movie and have popcorn and a soda, maybe a hotdog.
Come to IHD.com and tell us about it.
Find time to play everyday. Color in a coloring book, use model clay, play a game, go hopscotch, roll down a long hill.
Take up a hobby that is just yours alone and do it regularly.
Be silly- wear a red nose, speak in a funny voice, hold your breath.
Kitkatz, this was some seriously good advice! Sometimes I read this section for no specific reason but end up finding something I can use...like I just did when I came across your old post.
-
Hi Tiffanyjean,
I am my husband's carer. It's extremely difficult. Some days I resent the situation so much that I want to run away. He had a transplant on July 22 and in some ways life has become more difficult for me than when he was in dialysis. Don't get me wrong, I am thrilled and grateful for his new kidney, but I have been working 6 (some weeks 7) days a week, 12-14 hours a day, to try and make up for all the wages I lost having run out of sick time during his surgery/aftermath. I resent him sometimes because he does NOTHING to help me out. I take care of his prescriptions, appointments, meals, everything. Sometimes I say, please just wash the dishes for me today. Please take out the garbage! He will do it, but with a lot of grumbles. He sits all day watching the New Yankee Workshop on tv. OK, now I feel terrible for complaining about him. He's HERE and that's what I have to be grateful for. But its still hard.
-
Hi Tiffanyjean,
I am my husband's carer. It's extremely difficult. Some days I resent the situation so much that I want to run away. He had a transplant on July 22 and in some ways life has become more difficult for me than when he was in dialysis. Don't get me wrong, I am thrilled and grateful for his new kidney, but I have been working 6 (some weeks 7) days a week, 12-14 hours a day, to try and make up for all the wages I lost having run out of sick time during his surgery/aftermath. I resent him sometimes because he does NOTHING to help me out. I take care of his prescriptions, appointments, meals, everything. Sometimes I say, please just wash the dishes for me today. Please take out the garbage! He will do it, but with a lot of grumbles. He sits all day watching the New Yankee Workshop on tv. OK, now I feel terrible for complaining about him. He's HERE and that's what I have to be grateful for. But its still hard.
Wow, reading these posts, and this post especially - make me glad I'm not married! I am 42, was on dialysis for 7 months back in 2011 before receiving a live donor transplant. My care partner history is sporadic at best - I have to mainly rely on myself to get things done, and relied on the kindness of others when I was recovering from both my transplant surgery and my emergency-save-the-transplant-from-botched-biopsy surgery 3 months later. If the boys some of you are married to had to survive what I went through back in 2011-12, I bet they'd be 6 feet under after just a few weeks! How do these so-called adults get to be such babies??? What doesn't kill you makes you stronger, unless you're a wimpy "oh woe is me, look at what I have to go through" male who doesn't deserve to be called a man and decides to throw everything regarding his care to his loving wife. Sorry for being so harsh but...wow.......
KarenInWA
-
He sits all day watching the New Yankee Workshop on tv.
Then he should have learned how to build something for you.
-
Simondog, you're right. I asked him to build me an Adirondack chair. He says he can't because he needs all the tools the master carpenter on the show has to get it done right. Mind you, this man has a garage full of tools. He just wont do anything. I'm thinking he's really not feeling good.
-
Hi Tiffanyjean,
I am my husband's carer. It's extremely difficult. Some days I resent the situation so much that I want to run away. He had a transplant on July 22 and in some ways life has become more difficult for me than when he was in dialysis. Don't get me wrong, I am thrilled and grateful for his new kidney, but I have been working 6 (some weeks 7) days a week, 12-14 hours a day, to try and make up for all the wages I lost having run out of sick time during his surgery/aftermath. I resent him sometimes because he does NOTHING to help me out. I take care of his prescriptions, appointments, meals, everything. Sometimes I say, please just wash the dishes for me today. Please take out the garbage! He will do it, but with a lot of grumbles. He sits all day watching the New Yankee Workshop on tv. OK, now I feel terrible for complaining about him. He's HERE and that's what I have to be grateful for. But its still hard.
I went with my husband to a chronic pain treatment program at Mayo. He was there for a month, I was in the family program for a week. They basically told us caregivers that we are doing way too much. That the patient needs to participate in life. Without having activity and a purpose, they'll end up with depression or resentments (or both) and that, within reason, we should have every expectation that they help with light housekeeping, laundry, paying bills, food prep and other mildly physical activities. One woman said she had stopped putting her husbands socks and shoes on and he started doing it himself that morning. She almost broke down and cried. She had been doing it for 7 years!! It's not easy, but it's worth it to try because otherwise the caregiver is burnt out and no good to anyone. I know dialysis is not the same as a chronic back injury, but there are many dialysis patients who live alone or care for other that do it themselves. After a transplant it should be a lot better. It can take time but hopefully, with encouragement, he will take on more. Make a list and stop doing those things on the list!
-
I have thus far refused to quit my job and go on disability, and the only thing I have my care partner do is cover for emergencies while I am on the hose. If I start acting disabled, I'll feel disabled, and then life will go downhill.
-
I've been asked to participate in a debate at the Annual Dialysis Conference coming up in February in Seattle: Home Dialysis Care Partners They Are a Must, They Are Not Necessary
As someone who has lived alone and self dialyzed for 13 years I'm obviously taking the "they are not necessary" side. This thread highlights the significant uncounted cost of a policy that requires others to care more about, have more responsibility for, the treatment than the one being dialyzed. The policies at many providers require dependence on a caregiver, this significantly increases both the disease and the treatment burden since it is now two people who are dealing with the rigors of this gd disease and its treatment. A case of a well meaning attempt to decrease the immediate burden on the dialyzed resulting in a significant increase in the burden over the mid to long term.
-
Bill -
Two points to cover:
- In an extreme case, a patient could choose stopping treatment over a clinic sentence. Is it the position of Fresenius and DaVita that such patients are better off dead than with solo home hemo?
- The requirement seems to be based on liability - "If someone dies because they did not want to do in-clinic dialysis, that is fine - but if they die while going solo, their family might sue us
The role of the medical professionals should be to educated the patient as to risks/benefits, and then let the patient make the decision. That is lacking with current care partner policies.
A case of a well meaning attempt to decrease the immediate burden on the dialyzed resulting in a significant increase in the burden over the mid to long term.
I don't believe this is the reason. The reason is liability exposure. As long as some places require a partner, it is all too easy for legal counsel to say "If anything happens, contingency fee counsel will point out that other clinics require a care partner and use that as evidence that allowing this patient to solo was negligent."