I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Spouses and Caregivers => Topic started by: emma67834 on April 21, 2011, 08:05:57 PM
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We had our inspection for home dialysis today and I was told that I would have to take at least 2 weeks off to train for the machine my husband wants. I not only do not have any paid time off anymore but I also work 45-60 hours a week and get up at 4 am every morning. He wants to do this after I get home. I am so frustrated anymore. I get yelled at and my kids get yelled at for not doing things right and now with him doing this at home we will never get a break.
I love my husband, but when he was going in center I didn't have to worry about setting him up and forgoing my sleep to help him out. I think he is being selfish and looking out for himself as usual. I feel like I am being forced into this and that me and my kids do not have a choice.
He is diabetic and when he found out about that it took him years to actually take care of himself. By years , I mean the last two out of sixteen years. I feel like I am going insane and all I want to do anymore is walk out that door and leave sometimes.
I am willing to listen to any advice any of you have to help us make this work.
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It has to be a joint decision, it's unacceptable for you to feel like you're being railroaded.
It sounds like your husband will have every treatment reimbursed as medically justified (I'm assuming he is Medicare primary) so he could ask for four to six treatments a week incenter. The new payment bundle makes additional treatments more profitable (http://www.ajkd.org/article/S0272-6386%2811%2900039-4/fulltext) than under the previous payment system so the unit may be willing to provide them incenter.
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I am so sorry emma67834 - I agree, you should not be forced to do the home hemo if it is not for you. I hope you'll take Bill's suggestion and see if your husband can't get more frequent treatments. Best of luck. :cuddle;
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I completely understand how you feel. When Blokey was doing PD I was relieved when it failed to work. I realise this makes me sound like a b!tch, but it's the truth. It was such an intrusion on my life. I wanted it to work (I want him to be happy more than anything) but I was still relieved when he had to go back to haemoD. Obviously I had all the guilt and anger and frustration to deal with as well, but hey-ho. He has said that he won't consider home-haemoD because he knows it will be too much for me. Yes, I feel guilty that I've put him in the position where he feels that he has to pander to my every whim, but I am grateful that he looks out for me. I don't think I could stand the pressure.
Has anybody spoken to you (by anybody, I mean the Powers That Be, those who made the decision that he could do homeD)? I'm assuming they haven't? This seems odd to me; it affects everybody in the house and should be a decision made which takes into account everybody's views. I hope that Bill's suggestion is something you can look at (although I understand from a previous post that petrol (gas) prices may make this quite tough?) Do dialysis centres in the US offer a mileage allowance - some places in the UK do, but not the area in which we live ... *sigh*
I hope that you can get someone to listen to YOU.
*huggles*
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Thnaks all. He is the one forcing this iisue and the center and the doctor and the sicial worker all think this is such a good idea, but they do not live with him. He is not willing to In Center anymore at all if he can do this at home. Not only am I going to lose a weeks worth of work time but the distance for the training is ridiculous. He will got to a center that is 122 miles one way from our house for training and they said the first 2 weeks is Mon- Fri. I will have to be present one of those weeks and then every Friday for the next 5. I think we are going to be out alot of money doing this and right now we are financially tight.
His answer is that the social worker said that we can get a once a year gas allowance from the kidney foundation. I am really starting to think that In Center is the best decision for us. My husband is self centered and always has been and this is all about him and his disease. I get that and am sympathetic to him but wish I could get the same courtesy on me missing time from work and all I do around here!!!
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Could you schedule a one to one meeting with the social worker and lay things out to him/her. This is not a good situation for you and nor is it for your husband since the resentment you will feel could actually cause you to walk away. Don't be bullied into this. Being a caregiver is hard enough when things are excellent between spouses....this sounds like a recipe for disaster. :cuddle;
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I would think that if you didn't want to be a caregiver for home hemo then you shouldn't have to. I know my BF wouldn't be able to do it....he gets quesy just walking into a hospital. I know he couldn't handle being a caregiver with home hemo.
Just tell him nope...can't do it sorry. I agree with monrein don't let anyone bully you into doing something you don't want to do.
Sounds like there is some big resentment because he knew he was diabetic and yet did noting to take care of himself. Now you and your kids are dealing with the aftermath. I don't blame you....I'll be the first person to say - you made your bed now you have to lie in it....have fun.
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id try to talk to someone (dr patient type talk) priviatly so that hubby cant blame it on you, but them for disallowing it for *some*reason. I really say DONT do it if your feeling this. If it was just fear, i'd say, well, you can probably get over that, but all your offering here, i could NO way do it at home with my 'patient' being anything but wonderfully grateful, and him not forcing the issue. And sorry :embarassed: (really) to those who think it's a breeze but i say its not. It's HUGE and i am the one who wanted to bring it home and still, it's huge. I am so glad and have NO regrets for bringing it home, but if i were in your spot, i'd have cried through the whole training (almost did anyway :o ) and been very resentful. Sorry too if im sounding stronger than my usual whoosie self, but this post hit an ole *past* feeling of pressure and its wrong to me...
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I am a bit surprised that the clinic has not brought you into the conversation more. When we decided to take dialysis home, I had to meet with the social worker to be able to assure them that I was totally ON BOARD with the decision.
You should not, absolutely NOT be forced into participation against your will. It will not be good for anyone. It is a huge commitment, just as Boswife says. I can only see your resentment growing and poisoning all areas of your life.
Stand up for your self in this issue. :grouphug;
Aleta
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You really should not be forced into doing this. It should be a decision both of you make or there will be a lot of resentment. Make an appt to talk to the social worker or the doc.Explain your situation -your work schedule , etc. working the hours you work you will be too tired to deal with dialysis when you get home aong with everything else you have to do. They may not even know your situation or your work schedule.
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I would hope that the center wouldn’t just assume that you are a willing participant. Your hubby should include you in the decision as well as the clinic. You have a say in the matter.
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Sounds like hubby is very controlling and doesn't care about anyones feelings. :grouphug;
About missing income while training would you be able to receive family medical leave and receive payment. talk to the social worker and ask for this information.
About home hemo is he going to put his own needles in and do everything himself and you just there in case if needed.
I do home hemo and my husband Dave is my care partner he is there for me every step of the treatment, doctors visits, and when I go into the hospital he is there and stays there until I go home he doesnt trust anyone and questions everything.
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Again thanks guys. I have spoken with the social worker and the HD nurse. Still its going ahead without my total agreement. I want to do what is best for my hubbie. They say this is the first time he has been positive and I don't need to discourage that. I understand that part but how come they don't understand that this is OUR life. I was ok with him going in 3 days a week in center and then we had our time. Now I feel as if our time is going to be us bickering because I am stressed all the time when we do this at home. The did tell him that this is his responsibility, but when hefirst found out he was diabetic, it took him 13 years to actually start taking care of himself right.
I wnat to be a willing participant in this but I just keep thinking that we are biting off more than we can chew at this point. I am unsure if my job will allow me to take the time off and the FMLA act is unpaid so that does not help either. I love my job and don't need to lose it nor want to lose it since jobs are very hard to come by with this economy. I feel like I am fighting a losing battle anymore. The kids and I don't do anything right most days anyway. So really how is this going to make things better. There are days when I get up and could just leave and not ever come back home. I won't mainly due to my kids and my husband but that is how I feel about 6 days a week anymore. Is it normal to feel like this or am I just going completely insane with all the stress from this disease?
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To all,
My apologies in advance, but I am amaze as to what everyone is saying. What about this patient (hubby)? We all been there REMEMBER!! Did you guys forget what this forum is about? Sorry, but I think you should at least give your hubby a try. I do home D and I do it alone, however, I don't live alone but I refuse to drag my family into this and ruin their life. However, there are options. If your husband is not afraid of needles than he is capable of doing Nxstage alone. Yes he would need your family (household people) at first but after a couple of months, he will be good at it and will no longer need help from you guys. I am a witness as I do it all myself. Once in a blue moon, I will ask someone for help and only if I really need it. My family is happy and so am I. However, you have to understand what your hubby is going through. He is trying to find peace in his situation. Nxstage is a good machine. It will change his life and attitude. Please try and give him a chance. He will come around once he feels comfortable.
Regarding the work issue is it possible for someone else in your family to be trained and then train you when the machine comes to the house in case of an emergency (only if your hubby is willing to take on this issue alone…trust me it can be done because I'm doing it)? That way you can still go to work and not miss any pay. Try it out for six months letting your hubby know that you expect for him to learn it well so he can do it on his own with the help of everyone in the house only if he needs it. If it doesn't work, than back in center he goes. I believe he is looking for a way to be comfortable and I'm sure he knows that he is making his family unhappy. He just not in a comfortable place yet. I know because your hubby was me. Now that I do it at home, I'm very happy and my family is happy to. I feel much better than in center treatments and I'm off all my meds except for Vitamin D. Now I have to build my life up again because most of the time I was in center I had no time for nothing. Now I have energy and a lot more time to do the things I could not do and I can eat mostly everything to. My blood results are excellent and I'm doing very well. PLEASE GIVE YOUR HUBBY A CHANCE!!! Sorry, but I know how he is feeling.
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CDW, I do know how he is feeling. He wnats to do the baby K not the NX. He says its because on the babky k its only 3 days per week versus 6. I want him to do whatever will make him feel the best and maybe that will help with his grouchiness too. I have NO help from his family because he has me. His mom made that comment last night to me. My own family lives 3 states away so I cannot rely on them except for when I need to vent. I realize that this is about him and his health but the rest of us are in this battle too. I can't get a home health place to come in for respite care unless he is terminal, I have checked. I am glad that you are doing so well with it. Unfotunately with us I see him being codependent on me for everything as it has been in the whole 16 years of our marriage.
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ya know emma, its really hard to figure it all out because ........ ;) WEll, if his grumpy ness is due to ill health and he "wants" to get better so he can be better to his family and himself, well, then a person (wifie) im sure would be willing to give her all for the best. BUT... if he just wants one more thing 'his' way, and his way only, well, as others have said, resentment is sure to follow. Is he willing to help in some way? I mean, is he into that part of it? Just an example of helping out.... Hubby doesnt do tons to help in his treatment as his vision is not that great , but he lays out the tape, starts the machine early so that it can set a bit before snap and tap (REALLY helps to do that) does all the clean up after, and then he now does so much as far as the cleaning of the house, laundry, dishes garden,,, all the things that he CAN do. If he were just bossing me into doing this 'for' him i think i'd die of stress and heartach. NxStage is wonderful, and has brought him to such great health and that is enough to make me love it ;D and get over my own phobias. It really does become just part of 'what ya do' ya know routien, and a pleasant time to share with one another.......I do so hope that your hubby is acting poorly because he needs help, and that the better treatment will bring a wonderful change of attitude in him if you do decide to do this. Im soooooo pro NxStage, and i wish you the best what ever you decide to do .
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Emma, I really don't know anything about Baby K. However, I do know that you have to put your foot down and let your hubby know that he must do something that everyone in house can agree to.
Nxstage can be done 2-5 hours a day for 5-6 days a week depending on your hubby's size. The machince is very safe. It will alarm if your hubby is making a mistake. It's very easy to learn and it small and does not take up a lot of room. You can use bag or pureflow. I suggest pureflow because it quicker and easier to deal with. Although it does take 7 hours to make a batch but it takes 10 minutes to hook up the line for making a batch than the machine does everything it self. Also, you can use bags which takes a little longer to set up but you can use them right away. However you will get a lot of boxes with supplies for the machine. You don't have to come out your pockets because everything is paid for. Also your hubby will get supplies for his arm like needles, bandaids, 2x2s, etc... Your hubby can do it anytime during the day or anytime late at night whatever works for him. For the first couple months it will seem like a lot but after you get over that is will become so easier for him that it becomes part of his daily routines.
Tell him that you want him to do it himself but you will help when he needs it. However, you are not going to do it for him. Tell him that Nxstage is his best choice because it doesn't require too much work. See what he said and constantly remember him he will do this himself. Tell him that you know a few people who does it themselves and we are doing well.
:2thumbsup;
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Thanks for the advice and I have told him all of this. I can hardly get him to do anything around the house some days because he has other health issues as well. My kids 15,13 and 11 help out with all the housework and if not for them, I have no clue what my house would look like. My kids should be out enjoying their childhood instead of coming home straight from school and being chained here. Most nights I do not get home until 6 or 7 pm. I am usually in bed by 9 due to me getting up at 4 am to be at work by 6:30 am. My job is demanding and they depend on me to open up the office and get everything going. I am the receptionist where I work but also do the accounts payables. I love my job and I also love my family. My job helps me deal with the stress of everything at home. I work in a drug/alcohol reahab and have counselors that give me advice often.
I am on the fence about all of this due to the fact that I have no family support to help me out. I know my husband has told me that he will do the set up and break down and then do all of this himself but I just don't believe that he will. I can't get him to even do laundry while I am at work. Sometimes... ok alot of the times, I wish I was the one going through this because I have always been the one who tried to make things easier on everyone. Thanks to all of you for listening to me whine.
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oh emma, this is not a whine.. It is your feelings and your life and you do need some assistance from somewhere (someone in particular...hubby?) and to be able to get this 'out' somewhere. Us women can take a lot, but there are limits. I worry about this because it seems you have enough on your plate. I wish something great to happen soon for you and that things begin to look up.
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Thank you boswife. It means the world to me to actaully have someone know excatly where I am coming from. I hope things look up sometime soon too.
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To all,
My apologies in advance, but I am amaze as to what everyone is saying. What about this patient (hubby)? We all been there REMEMBER!! Did you guys forget what this forum is about?
This is the caregiver section and she should be able to express her reluctance without feeling guilty.
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Thank you Carol also. I do feel guilty when I say what I am feeling and this site is a great support network. I understand both sides of the argument here. Mine being that I am healthy and that my husband is not. I guess I just need to figure out what will work best for us as a whole.
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Emma,
If it turns out that you proceed with the home hemo, would your employer allow you to take home some of the work during the training period? I realize that you can't do the reception work then.
:rofl;
But perhaps you could do some of the accounts receivable. I know that during our training there ended up being lots of sitting around time. This might help them through your absence without having to train someone else to fill your position.
I know you are conflicted about this, but regarding your children, having lots of responsibility at home is actually very good for them. You should be very proud of them and realize that what they are doing now is excellent preparation for the future. I work with many, many children and the ones with the most home responsibility always seem to turn out really well. :2thumbsup;
Keep coming back for support, Emma. Don't feel guilty about your emotions, because they are REAL. No one is going to be in exactly the same place as you are, so while we can try to understand what you are going through, we cannot put ourselves into your shoes perfectly! So listen to any advice that makes sense for your situation and let the rest roll off your back! (including mine! :rofl;)
Hugs to you.... :grouphug;
Aleta
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Emma, have you talked to the social worker or the coordinator for training about your schedule. My husband does home hemo but he does most of the stuff himself. he also does nocturnal on a baby k. We have no children and I am a teacher. My hours are not nearly as long as yours and I would find it very tiring if I had to be responsible for dialysis 3 times a week as well. I'm wondering how soon the novelty of not going to the unit will last if he has to be responsible for the whole treatment himself. It will be a lot of responsibity for him and from what you say he doesn't seem to take a lot of responsibility. Take care. :cuddle;
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I have spoken with them and the training schedule depends on the machine he uses. It's a 244 mile round trip for the training for either machine. That me losing a whole day of work just by that. Let alone a whole week or more for training. I am wondering maybe when he sees what all there is to do and how much responsibility it REALLY is on him and me then maybe he will go back In Center. I just want whats best for all concerned.
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Emma what I meant was have you told them about your schedule now. Getting up early to go to work and not getting home until really late. It would be fine if he was going to be totally responsible for all treatments but from what you have said that is probably not going to be the case. If he was going to be totally responsible he could do the treatments while you are at work.
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Del, I did tell them what my schedule was and they told him he would have to be responsible for his dialysis. He did agree to that but I know him very well enough that he will have this issue or that issue and then I will be the one doing it. Maybe I am just scared that once he has this at home and nobody is really forcing him into doing it, that he will only do this as he feels like it. When he first took his shots of insulin it was whenever he felt like it and I think he may do this the same way. Hopefully not. I know that him going in center is a have to situation and he knows he really cant get out of that other than showing up. I don't know maybe I am overreacting to all of this anymore. My friends and my family keep telling me that we at least need to try it for his sake. I am just wondering how we are gonna afford all the gas for the training that is 244 miles round trip for 6 weeks!
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That will be a lot of money for gas!! Be sure you or his team at dialysis makes him understand that if he doesn't comply and do the treatments himself and when he is supposed to do them he has to go back to the dialysis unit. Are yout friends and family willing to help out???
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I was quite distressed to hear that you are being forced into this situation. I don't know if this helps but I am a single male and have been on PD for one and a half years. I have never needed help setting up or coming off the machine. Is your partner capable of lifting the 5kg bags and running the drain line to the bathroom? That is the only physical exertion that is required. If the alarm goes off, I deal with it, Sometimes I need to ring the 24 hr help line but mostly I can figure it out myself. On the very odd occasion, my machine plays up (such as a power failure), then I turn it off and immediately start the daily bags (every 6 hours). To be perfectly honest, he is a little bit selfish. I have a l philosophy that this is my illness and I have to deal with it and not cause distress to others. Sometimes that means there are days where I have to tell white lies to friends and family that things are just fine where they really are not. There are very times when I need someone and I have a couple of intimate friends willing to share my depression. In conclusion to my rambling, I believe a carer has the hardest job of all. You have to share the illness as well as the guilt. Tell your partner there are lots of singles on PD who manage quite well.
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Sometimes that means there are days where I have to tell white lies to friends and family that things are just fine where they really are not.
I can always tell when my Blokey is lying about how he feels, and I'm more than happy to make sure friends and family know that he's not as well as he's making out. I like to share the burden of my worrisomeness.
;D
How are things looking, Emma?
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Emma, one word you used to discribe your husband was"self-centered and has always been that way", ah, Ive had dealings with people like this and they certainly do need help but not your kind. If he has always been this way, you are not going to make any differents in his life no matter if you do or dont do him at home. Tell him, the clinic, his neph. that you are not going to do this at home. If this was his behavior before he was diagnosed, it will always be his behavior.
Dont beat yourself up over this! Yes he is sick, but he has no right to blame and make you feel quilty for this. It was choices that he made in his life that caused this awful thing to happen. He has kidney disease, and that is unfortunate! But he has alot of other issues within himself that have deep roots. He needs counceling!
You love him, but I personally would not do him at home just because he wants it. You may be right in letting him do himself because Nxstage is very hard to learn (looking back) as a healthy person, so it would probably be hard for him the patient. But I personally would not do him. Love him, Yes, he is your husband! Do not walk out, because this is very hard on him and he needs you more than you need him. That is a fact! But do not do him at home! Take care of your children, love them and include them in the helping of your husband. But if he in anyway gets angry and yells at you or your children, turn and walk out and leave him to his thoughts. He will think twice about doing that again. But tell him that every time he disrespects you or the kids, that you and the kids will leave for awhile.
I personally love doing home dialysis on my husband. Others on this site will tell you that Iam an advocate for it. But you are dealing with Teenagers who need constant supervision as it is. A full time job and not only a selfish husband (as you said) but a self-centered one at that.
Bottom line, Emma, don't agree to this. If he wants this, then let him do it all with very little help from you. If he does do this and you see a change in his attitude over time, and you want to help him more than do. My prayer is that he stays in-center!
Please keep us in the loop, and all my :pray; to you and your kids right now! Your husband needs lots of prayers too!
lmunchkin :flower;
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bottom line is if you don't show up for the training he won't be able to do home dialysis...hhmmm...setup a cab to come and pick him up for incenter treatments. "Look we are not doing this at home. Here's your ride, take it or leave it."
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Exactly Rsudock!! This man has some very serious issues that need to be addressed. It is true that he can't help that he is sick, NO DOUBT!! He will not get better with this disease unless he gets a transplant. He can dialysis and feel somewhat better, but no chance at life like it once was. I really think with his other issue Emma, he really should be in-center where they will monitor and hold him to the line. No sneaking or shortcuts as he would probably do if done at home.
And if I may add, Not all In-Center's are bad. For the most part they try to do their jobs to the best of their abilities. I think its just that they have rules that they go by and expect others to follow. They have to answer to someone too, so they are just doing as they are told. Emma, please let us know of your concerns, there are caregivers and one's who have this disease themselves, that can really help suggest a solution that may possibly work for your situation! We will do our best here at IHD.
lmunchkin :flower;
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If he is as stubborn as u say, he can do the same thing in center, not show up, refuse a full treatment, and they cant force him, they will treat him as nonconplaint which is no good if you try to get a kidney transplant. I seen it at every treatment while I was in center.
I dont understand if you are telling his unit you are not interested in homehemo why they are not listening, they will be putting him, you and themselves at risk.
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Hope he realizes that it is just not treatments. He has to be responsible for everything. Ordering supplies, packing it all someplace in your house, setting up the machine and disinfecting and taking it apart in the morning. It is a lot of work and takes a big commitment!!
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our Center only asked me to come in the 1st day of training and then one other time, Otto had been told he had to do it ALL on his own and he did!!!! :)